It's been about 10 days.. Everyone is finishing up their antibiotic, and they all seem to be feeling better.. They go back to the doctor on Thursday the 20th.
I want to ask the doctor to retest them for strep.. Whoever it is they see I'm sure is going to look at me like I'm crazy.. Since never in my 15 years of being a mom have they ever retested one of my kids for strep after they had just treated for it.. But I'm worried.. what if the antibiotic didn't kill it all, and there is some strep in there still hanging on, just waiting to wreck havoc on them and have it mess up Sweet Pea as well.
Mr Man got a secondary strep infection and I had him back at the doctors last Monday because somehow the strep throat moved though his boy and started affecting his joints(in this case his right knee) The Doctor called it post secondary strep. At the time he said we would just finish the treatment of the strep and if it is still there at the end of the antibiotic Mr Man was on, we would need to do more treatment. At the moment the pain seems to be gone from it, so I don't' think we will need to treat more.. It's just that strep is a very tricky thing and I just need to be sure IT'S GONE.....
Sweet Pea even keeping her away from home and all the sickness for 48 hours still got very symptomatic.. Nothing Major.. Just alot of little OCD stuff, having to eat the same thing for breakfast in the same way every day.. Moody.. Obsessive thinking and thoughts, crying.... but no major crying fits, no major melt down.. but alot of snapping at those around her and tears.
Showing posts with label day by day happenings.. Show all posts
Showing posts with label day by day happenings.. Show all posts
Monday, January 17, 2011
Saturday, January 8, 2011
A house full of Strep
Had my doctors appt Friday, Yesterday Jan 7,2011
Sure enough I tested Pos. for Strep also.. They started me on a z-pack and we are getting DH started on antibiotics also..
so everyone in our family are now on antibiotics.. hopefully we will kill it off quickly the 1st time round..
Sweet Pea is still at my grandmas not to be exposed to all of this strep. Tonight around 6pm everyone will have been on antibiotic for 24 hours so it might be safe for her to come home.. I just don't know..
if she wants to come home I'll bring her home.. but if she is willing to stay one more day away from this sick ward called our home, might not be such a bad idea for her..
Sure enough I tested Pos. for Strep also.. They started me on a z-pack and we are getting DH started on antibiotics also..
so everyone in our family are now on antibiotics.. hopefully we will kill it off quickly the 1st time round..
Sweet Pea is still at my grandmas not to be exposed to all of this strep. Tonight around 6pm everyone will have been on antibiotic for 24 hours so it might be safe for her to come home.. I just don't know..
if she wants to come home I'll bring her home.. but if she is willing to stay one more day away from this sick ward called our home, might not be such a bad idea for her..
Thursday, January 6, 2011
Sweet Pea's a Strep detector.
Sunday Little Man & Sweet Pea got sick with a tummy bug.. puking and the other end..
ONLY even while sick Sweet Pea was her sweet normal happy love able little self..
I kept them both home from school Monday just to be on the safe side that they
were well enough to go to school.
Tuesday I sent them both well all 4 of the kids to school.. Tuesday night..
Mr Man was complaining about not feeling well.. Said his belly hurt really bad.. I
figured stomach bug that the younger two had.. but nothing came of it.. as far
as stuff coming out of him..
BUT...........
Sweet Pea was having PANDAS symptoms.. really moody, yelling at everyone crying at
a drop of a hat.. and mostly very hateful anytime her and Mr Man were in a room
together.. In my mind I was thinking.. Dang it the girl went to school and was
exposed to strep.. Shoot..
Wed.. Little Man woke up complain his belly hurt.. but nothing was coming out of him
so I sent him to school(oh also no fever) Mr Man was still complaining an awful
lot about his tummy but no fever and nothing coming out so I sent him to
school.. BUT Princess was sick with the stomach beg stuff and hers was coming out
the bottom end of things.. So she stayed home from school.. while the other 3
went..
Sweet Pea after about an hour of being home was very PANDAS crying, mood swing,
OCD
Today Little Man woke up not looking well at all.. didn't really have a fever per
say but was 99.9, complaining that his belly hurt really really bad, I let him
stay home.. though out the day he kept saying his throat was starting to get
sore, and he felt like he was going to throw up only he never did that and that
his head was killing him.. around 3pm he said his neck was really stiff and
sore.. something clicked in my head that those all could be signs of strep..
even though this whole week I was thinking virus because that is what Rhett and
Sweet Pea had earlier and Princess sort of had it too.
Little Man woke up today saying he didn't feel well but once again I sent him to
school.. he came home from school tugging at his ear and his ear bright red,
complaining that his belly hurt real bad and that his "brain" hurt so i figured
he had a headache..
Picked Princess up from school today... she didn't even know Mr Man was home sick
yet alone what his symptoms were... but as soon as she got in the car she
raddled off a list of things that was still bugging her when I asked how she
felt.. sore throat, stomach pains, neck sore and head killing her..
Sweet Pea came out of school today, skipping, all smiles, no signs of PANDAS
symptoms.. She went right from school to rollerskating, from rollerskating to
gymnastics and when I got her home from gymnastics it was time for me to take
Princess,Mr Man and Little man to the doctors so I picked them off and lefter her with
DH... She wasn't around the other 3 all days long and NO PANDAS symptoms to speak of...
Mr Man, Princess and Little Man all tested Pos for strep tonight.. :-(
Little Man on top of it has an ear infection and Princess on top of it still has the
UTI.
Here I knew Sweet Pea had been exposed to strep due to the symptoms it just didn't
hit me she was being exposed to it at home and not at school..
BUT!!!!!!!!!!!!!! it was thanks to her that I took the other 3 in.. just having
a slight sore throat, and tummy pains never would have had me running them to
the doctors.. I mean there is a bad stomach virus going around here, and they
were not running fevers... It was her having PANDAS symptoms that had me
thinking of different signs of strep and her symptoms was what made me take them
in.. I really thought the doctor might LOL at me bring kids who biggest
complaint really only complaint was that there tummy hurt into the doctors when
they weren't even running fevers...
but they didn't and they tested them for strep and they all test post.
I'm making myself an appt tomorrow cuz I have been having the tummy pains and a
slight sore throat and my head has been killing me also.. and chances are good
with 3 cases of it in the family that I could use an antibiotic also.
ONLY even while sick Sweet Pea was her sweet normal happy love able little self..
I kept them both home from school Monday just to be on the safe side that they
were well enough to go to school.
Tuesday I sent them both well all 4 of the kids to school.. Tuesday night..
Mr Man was complaining about not feeling well.. Said his belly hurt really bad.. I
figured stomach bug that the younger two had.. but nothing came of it.. as far
as stuff coming out of him..
BUT...........
Sweet Pea was having PANDAS symptoms.. really moody, yelling at everyone crying at
a drop of a hat.. and mostly very hateful anytime her and Mr Man were in a room
together.. In my mind I was thinking.. Dang it the girl went to school and was
exposed to strep.. Shoot..
Wed.. Little Man woke up complain his belly hurt.. but nothing was coming out of him
so I sent him to school(oh also no fever) Mr Man was still complaining an awful
lot about his tummy but no fever and nothing coming out so I sent him to
school.. BUT Princess was sick with the stomach beg stuff and hers was coming out
the bottom end of things.. So she stayed home from school.. while the other 3
went..
Sweet Pea after about an hour of being home was very PANDAS crying, mood swing,
OCD
Today Little Man woke up not looking well at all.. didn't really have a fever per
say but was 99.9, complaining that his belly hurt really really bad, I let him
stay home.. though out the day he kept saying his throat was starting to get
sore, and he felt like he was going to throw up only he never did that and that
his head was killing him.. around 3pm he said his neck was really stiff and
sore.. something clicked in my head that those all could be signs of strep..
even though this whole week I was thinking virus because that is what Rhett and
Sweet Pea had earlier and Princess sort of had it too.
Little Man woke up today saying he didn't feel well but once again I sent him to
school.. he came home from school tugging at his ear and his ear bright red,
complaining that his belly hurt real bad and that his "brain" hurt so i figured
he had a headache..
Picked Princess up from school today... she didn't even know Mr Man was home sick
yet alone what his symptoms were... but as soon as she got in the car she
raddled off a list of things that was still bugging her when I asked how she
felt.. sore throat, stomach pains, neck sore and head killing her..
Sweet Pea came out of school today, skipping, all smiles, no signs of PANDAS
symptoms.. She went right from school to rollerskating, from rollerskating to
gymnastics and when I got her home from gymnastics it was time for me to take
Princess,Mr Man and Little man to the doctors so I picked them off and lefter her with
DH... She wasn't around the other 3 all days long and NO PANDAS symptoms to speak of...
Mr Man, Princess and Little Man all tested Pos for strep tonight.. :-(
Little Man on top of it has an ear infection and Princess on top of it still has the
UTI.
Here I knew Sweet Pea had been exposed to strep due to the symptoms it just didn't
hit me she was being exposed to it at home and not at school..
BUT!!!!!!!!!!!!!! it was thanks to her that I took the other 3 in.. just having
a slight sore throat, and tummy pains never would have had me running them to
the doctors.. I mean there is a bad stomach virus going around here, and they
were not running fevers... It was her having PANDAS symptoms that had me
thinking of different signs of strep and her symptoms was what made me take them
in.. I really thought the doctor might LOL at me bring kids who biggest
complaint really only complaint was that there tummy hurt into the doctors when
they weren't even running fevers...
but they didn't and they tested them for strep and they all test post.
I'm making myself an appt tomorrow cuz I have been having the tummy pains and a
slight sore throat and my head has been killing me also.. and chances are good
with 3 cases of it in the family that I could use an antibiotic also.
Thursday, November 18, 2010
Symptoms have not let up.
Sweet Pea is still having a world of symptoms. Eating issues, sleeping issues, mood issues, fear issues.. It's making her day to day life hard on everyone. But if it is hard on us around her, how much harder does it have to be for my poor little baby girl.
She isn't eating, well hardly anything, Chicken noodle soup and spaghetti-O's is about it for the last week.. but I don't mind making Spaghetti-o's at 8am if it means she is eating something for breakfast. Yesterday for lunch she took maybe 3 bits of her food and that was it. We had went to a buffet for lunch and she got all excited seeing the different types of food, ONLY after she got it on her plate and she took a bit of things she no longer wanted it for a number of different reasons.. It was too hard, or the texture in her mouth didn't feel right.. and we pretty much lot her at eating anything more when the breading came off the shrimp and she saw the red vain lines.. that pretty much sent her over the edge as far as even trying to eat anything more yesterday afternoon. She did however have a bowl of chili for dinner with no problem at all.
Sleeping is getting bad again.. well I should say bedtime is bad.. She doesn't want to leave my side at bedtime.. She is crying and crying and crying every single night. I can't put her in bed and then go to the bathroom to brush my teeth or anything.. she just flips out when I do.. Last night I got all the kids in bed except for Sweet Pea and we were sleeping in the living room again.(though she is happy to go to bed in my room, but DH and I are taking turns he takes the couch one night while sweet pea and I get the bed then next we take the couches and he gets the bed) Like I was saying everyone was in bed and DH was asleep, I told Sweet Pea to go lay down on the couch and I will be there soon, I just needed to take my contacts out.. and that sent her into a world of crying about why do I hate her.. I never do anything for her, I know she can't be in a room alone and I should have taken my contacts out before so she wouldn't have to be alone.. She ended up in the bathroom with me while I took them out, The boys bedroom is right next to the bathroom and I saw Little Man was not covered up(this was after I took my contacts out and we were on our way back to the living room) So while Sweet Pea walked into the living room I detoured into the boys room covered Little Man up and then I heard a blood curdling scream from the living room and next thing you know Sweet Pea was at my side mad, scared and screaming at me for leaving her.. I said I was just covering up your brother I was on my way.. She went on and on again how I must hate her and I didn't tell her I was going to do that..
Ya know i try to keep my cool with her, because I know when she is like this it's not really her in control but what is happening to her leaving her pretty much not able to control what she is doing.. but I didn't keep my cool very well at that point... and looked at her and said "honey I don't have to tell you or get your permission when I need to go to the bathroom or if I"m stepping into another room for a minute" She yelled in a voice that I haven't' heard since this spring in the mist of the worst of the PANDAS "YES YOU DO"....
When I heard that voice the same voice I heard back on April 29, 2010 when she was ripping the shirt off her back in the middle of the doctors parking lot.. That there was no reasoning with her at all at that point..
So I just went to the couch with her, hugged her and we prayed together.. and then she cried herself to sleep in my arms...
Her mood is like a swing, back and forth and back and forth.. one minute she is perfectly fine, the next she is crying or yelling at someone for something.. you can be sitting here talking and playing with her and the next she is storming off crying and sad and nothing has happened to make her that way.
Yesterday we were back at the dentist with her because Monday night a filling that was just done last week had fallen out. So we were back at the dentist..
She was soooooooooooooo good and soooooooooooo brave.. she sat in the chair look of terror on her face and her body shaking with fear but she let them refill it with no trouble..
Then we went to lunch I already mentioned about how she ate.. but there was more what I think were symptoms going on at lunch.. She really wanted to go to this McDonald's in that area with this super huge playground.. but my mom and I didn't really feel like eating McDonald's.. if she would have had a melt down over it I'm sure we would have gone, but she was happy to eat where we wanted and then we would take her afterwards to play.. We went to a Buffet and we left her pick where she wanted to sit.. She picked a section with no one in it, so we went in.. she picked at her food and maybe at three bits, and then an ice cream cone(well part of one).. but around the time she was eating ice cream.. a group of 4 or 5 older grey haired people came in.. sat in the same section we were in and was talking at very low normal for a restaurant voices.. Sweet Pea sort of kept covering her ears.. and then she said almost in a cry but not crying.. "can we leave please they are talking way to loud and it is hurting my head"
They were not talking loud it was not loud at all, but we just said ok and we left.. We drove the way to the McDonald's.. As I was looking for a place to park, she stared crying in the back of the van.. "just go home, just go home, there are too many people in there" There were people but it wasn't crowded.. She was too afraid the amount of kids in the play land was going to hurt her ears and head. For an hour and a half before this she had done nothing but look forward to getting to play there, and now here she was begging me to just take her home because of how the noise hurt her head from the older folks and she was scared about how many kids were there. She cried till she fell asleep on the hour trip home..
When we got home she cried that she didn't want to get out of the van.. but then things got a better.. she did ok for most the night.. with a bit of yelling at everyone not to make noise(even though we weren't) She had a few not melt down but storming off and yelling at us about the noise.. and then came the bedtime story I mention
Sometime though the night she left me in the living room and she climbed into bed with daddy.. I woke up alone, well not alone because Little Man sometime though the night left his room and joined me on the couch.. I woke up because I couldn't feel my arm which he was sleeping on.. I slid off the couch when it was time for DH to go to work left Little Man stay there and I joined Sweet Pea in my bed for the next few hours..
This morning Sweet Pea woke up.. ate spaghetti-o's for breakfast, picked her cloths out and then started telling me "mommy I'm really dizzy and my head hurts really bad" I got her Motrin.. and her antibiotic she took it then laid in bed crying till 5 mins before we had to leave when she had a melt down about her not going to school because of how bad her head hurt.. I told her that was fine she didn't have to go to school but that I had to take Princess to her dentist appt and she would have to come with us.. As I was walking out the door to get the boys to school Sweet Pea still crying and carrying on grabbed her coat and book bag and pounded her way crying into the van Yelling "FINE I"LL GO" We got to the school to drop her off and she had another yelling fit about her hair not being combed(that was because she wouldn't let me and she wouldn't brush it because of her head hurting) thankfully I had a brush in the van she grabbed it and started ripping though her hair with it.. The whole time Mr Man(my 5th grader who is at the 5th and 6th grade building)is asking her to please get out of the van so he isn't late to his school which is making her cry and yell at him.. and Little Man(the kindergartner) is standing outside the van saying "come on we are going to be late" which is making her yell at him also..
She screams "FINE" jumps out of the van still crying and goes into the school still crying ... Which is a first for her and me.. We have been dealing with PANDAS for pushing 2 years..(only knew what it was since May 2010) And this is the very 1st time she walked into school where she didn't have it pulled together before getting out of the van..
I haven't emailed her teacher yet.. but I'm very interested in seeing how she did though the day.. No one has called me so I guess that is a plus.
That is my latest update on how things are going here..
She isn't eating, well hardly anything, Chicken noodle soup and spaghetti-O's is about it for the last week.. but I don't mind making Spaghetti-o's at 8am if it means she is eating something for breakfast. Yesterday for lunch she took maybe 3 bits of her food and that was it. We had went to a buffet for lunch and she got all excited seeing the different types of food, ONLY after she got it on her plate and she took a bit of things she no longer wanted it for a number of different reasons.. It was too hard, or the texture in her mouth didn't feel right.. and we pretty much lot her at eating anything more when the breading came off the shrimp and she saw the red vain lines.. that pretty much sent her over the edge as far as even trying to eat anything more yesterday afternoon. She did however have a bowl of chili for dinner with no problem at all.
Sleeping is getting bad again.. well I should say bedtime is bad.. She doesn't want to leave my side at bedtime.. She is crying and crying and crying every single night. I can't put her in bed and then go to the bathroom to brush my teeth or anything.. she just flips out when I do.. Last night I got all the kids in bed except for Sweet Pea and we were sleeping in the living room again.(though she is happy to go to bed in my room, but DH and I are taking turns he takes the couch one night while sweet pea and I get the bed then next we take the couches and he gets the bed) Like I was saying everyone was in bed and DH was asleep, I told Sweet Pea to go lay down on the couch and I will be there soon, I just needed to take my contacts out.. and that sent her into a world of crying about why do I hate her.. I never do anything for her, I know she can't be in a room alone and I should have taken my contacts out before so she wouldn't have to be alone.. She ended up in the bathroom with me while I took them out, The boys bedroom is right next to the bathroom and I saw Little Man was not covered up(this was after I took my contacts out and we were on our way back to the living room) So while Sweet Pea walked into the living room I detoured into the boys room covered Little Man up and then I heard a blood curdling scream from the living room and next thing you know Sweet Pea was at my side mad, scared and screaming at me for leaving her.. I said I was just covering up your brother I was on my way.. She went on and on again how I must hate her and I didn't tell her I was going to do that..
Ya know i try to keep my cool with her, because I know when she is like this it's not really her in control but what is happening to her leaving her pretty much not able to control what she is doing.. but I didn't keep my cool very well at that point... and looked at her and said "honey I don't have to tell you or get your permission when I need to go to the bathroom or if I"m stepping into another room for a minute" She yelled in a voice that I haven't' heard since this spring in the mist of the worst of the PANDAS "YES YOU DO"....
When I heard that voice the same voice I heard back on April 29, 2010 when she was ripping the shirt off her back in the middle of the doctors parking lot.. That there was no reasoning with her at all at that point..
So I just went to the couch with her, hugged her and we prayed together.. and then she cried herself to sleep in my arms...
Her mood is like a swing, back and forth and back and forth.. one minute she is perfectly fine, the next she is crying or yelling at someone for something.. you can be sitting here talking and playing with her and the next she is storming off crying and sad and nothing has happened to make her that way.
Yesterday we were back at the dentist with her because Monday night a filling that was just done last week had fallen out. So we were back at the dentist..
She was soooooooooooooo good and soooooooooooo brave.. she sat in the chair look of terror on her face and her body shaking with fear but she let them refill it with no trouble..
Then we went to lunch I already mentioned about how she ate.. but there was more what I think were symptoms going on at lunch.. She really wanted to go to this McDonald's in that area with this super huge playground.. but my mom and I didn't really feel like eating McDonald's.. if she would have had a melt down over it I'm sure we would have gone, but she was happy to eat where we wanted and then we would take her afterwards to play.. We went to a Buffet and we left her pick where she wanted to sit.. She picked a section with no one in it, so we went in.. she picked at her food and maybe at three bits, and then an ice cream cone(well part of one).. but around the time she was eating ice cream.. a group of 4 or 5 older grey haired people came in.. sat in the same section we were in and was talking at very low normal for a restaurant voices.. Sweet Pea sort of kept covering her ears.. and then she said almost in a cry but not crying.. "can we leave please they are talking way to loud and it is hurting my head"
They were not talking loud it was not loud at all, but we just said ok and we left.. We drove the way to the McDonald's.. As I was looking for a place to park, she stared crying in the back of the van.. "just go home, just go home, there are too many people in there" There were people but it wasn't crowded.. She was too afraid the amount of kids in the play land was going to hurt her ears and head. For an hour and a half before this she had done nothing but look forward to getting to play there, and now here she was begging me to just take her home because of how the noise hurt her head from the older folks and she was scared about how many kids were there. She cried till she fell asleep on the hour trip home..
When we got home she cried that she didn't want to get out of the van.. but then things got a better.. she did ok for most the night.. with a bit of yelling at everyone not to make noise(even though we weren't) She had a few not melt down but storming off and yelling at us about the noise.. and then came the bedtime story I mention
Sometime though the night she left me in the living room and she climbed into bed with daddy.. I woke up alone, well not alone because Little Man sometime though the night left his room and joined me on the couch.. I woke up because I couldn't feel my arm which he was sleeping on.. I slid off the couch when it was time for DH to go to work left Little Man stay there and I joined Sweet Pea in my bed for the next few hours..
This morning Sweet Pea woke up.. ate spaghetti-o's for breakfast, picked her cloths out and then started telling me "mommy I'm really dizzy and my head hurts really bad" I got her Motrin.. and her antibiotic she took it then laid in bed crying till 5 mins before we had to leave when she had a melt down about her not going to school because of how bad her head hurt.. I told her that was fine she didn't have to go to school but that I had to take Princess to her dentist appt and she would have to come with us.. As I was walking out the door to get the boys to school Sweet Pea still crying and carrying on grabbed her coat and book bag and pounded her way crying into the van Yelling "FINE I"LL GO" We got to the school to drop her off and she had another yelling fit about her hair not being combed(that was because she wouldn't let me and she wouldn't brush it because of her head hurting) thankfully I had a brush in the van she grabbed it and started ripping though her hair with it.. The whole time Mr Man(my 5th grader who is at the 5th and 6th grade building)is asking her to please get out of the van so he isn't late to his school which is making her cry and yell at him.. and Little Man(the kindergartner) is standing outside the van saying "come on we are going to be late" which is making her yell at him also..
She screams "FINE" jumps out of the van still crying and goes into the school still crying ... Which is a first for her and me.. We have been dealing with PANDAS for pushing 2 years..(only knew what it was since May 2010) And this is the very 1st time she walked into school where she didn't have it pulled together before getting out of the van..
I haven't emailed her teacher yet.. but I'm very interested in seeing how she did though the day.. No one has called me so I guess that is a plus.
That is my latest update on how things are going here..
Saturday, November 13, 2010
The Dental stuff.
I have been a little busy and haven't had a chance to update the blog.
Still really busy so I'm going to cheat in my update.
I belong to a PANDAS email support group.. So though out this dentist stuff with Sweet Pea I have been updating the group. So I'm just going to copy and paste what I have been writing here, just changing the names to the kids blog names.
Here was the 1st update after the surgery on Tuesday.
~~~~~~~~~~~~~~~~~~~~~
I'll let ya know later if I'm seeing PANDAS flare up or not.. right now I can't
tell if it's normal crying and freaking out what would be expected from a 8 year
old who did not want to have this done and now has her whole mouth in pain, plus two injection sites at her arm which is hurting her and her stomach is upset because she is refusing to eat or drink anything yet I forced her antibiotic in her which normally gets upsets her stomach when taken on an empty belly. Right at the moment.. she seems fine but from the time she woke up at 1:30pm she has done nothing but cry off and on, more on then off, with alot of screaming at the top of her lungs about why did I do this to her and how bad her mouth hurts and how her arms hurts and how her head feels dizzy(from being put under) and just alot of laying in bed crying..
Was this normal waking up being sore and in pain stuff maybe.. Seeing how she isn't doing it now, she is still in bed but now has a Popsicle she is sucking on
and while she seems mad and snippy she isn't crying.. She only had a tiny melt down at the office before hand she started crying in the waiting room saying she wasn't going to have it done, she didn't want to be put to sleep she didn't want any IV's she didn't want a shot, That little crying turned into her running into the bathroom and locking herself in, Thankfully I thought about that before hand and I ran in after her so she locked us both in and it took me 15 mins of her screaming and crying about how much I must hate her to do this to her.. before I was able to get her to agree to come out of the bathroom then the person before her was running over so her 10:30am start time went till 11:30am which left her sitting in the waiting room thinking about it, which was NOT a good thing.. She cried that whole hour.. hiding curled up in a corner with her coat over her head... Once back there we had two game plans one was put her under by IV but if she wasn't taking part in that he was going to give her a quick shot to knock her out.. I knew before they even called her back it was going to be the shot.. so I held her on my lap she was flatly refusing to take off her coat so while I held her arms and upper body the dentist held her legs and the other guy pulled her coat down over her shoulder and gave her the shot. with in mins she was out..
Everything went well dental wise. she had 11 teeth worked on including 3 big cavities, one crown and a tooth pulled, she also lost a loose tooth while they were doing the work.
Now I wait and see what affect this has on her PANDAS wise.. I would be tempted to say all this crying is symptoms, but then I think it is also very normal to be afraid before being put to sleep and having dental work.. and over reacting might have become her norm since all this started I just don't really know.. Tomorrow either she will be over all the fair and pain and be back to herself.. or she could be worse and then I'll know what is going on.(I think LOL)
Just wanted to give you all an update.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~
This was written around 5pm on Tuesday Nov 10,2010
everyone was responding that they glad things went well and that she didn't seem to end up with symptoms.. My next update to them was this. It was written at around 7pm on Nov 10,2010
~~~~~~~~~~~~~~~~~~~~~~~~~
Thanks guys since I wrote last.. She has improved greatly.. She is now pleasant, sitting on the couch showing her little brother all the new stickers the dentist gave her, She ate some soft mac and cheese and she seems happy.. So at the moment all is going really well... I honestly didn't get my hopes up to see my sweet little girl today.. but at this moment she is herself. Thank you Lord..
one moment at a time is all i can ask.. praying she goes to bed as happy and wakes this way also.
~~~~~~~~~~~~~~~~~~~~~~~~~
My next update wasn't until 11:55PM on Nov 11,2010
here it is
~~~~~~~~~~~~~~~~~~~~~~~~~
Well she went to bed last night happy, just in pain and for some new reason she
is refusing Motrin.. I mean if I want to battle her and force it down her I
think I could I mean I'm still bigger then she is LOL.. But I figured if the
pain got that bad she knew I had Tylenol or Motrin that could help.. but she
would just cover her mouth and start crying No no no no every time I offered..
So she cried a bit here and there about pain last night.. but she slept
She seemed to have woke up happy this morning.. but about 9am I think it was
more PANDAS crying then pain crying at that point..
She didn't go to school because she still wasn't feeling well and still
couldn't really eat anything and was still in pain.. But she spent most of the day today crying.. at 1st I was thinking she was just hurting and that might have been some of it.. But when it got dark tonight her fear of the dark was back. I had to make sure every window was covered where she couldn't see the dark..
I had to go to the school for parent teacher conf. this evening at 6pm my
husband doesn't get home till 6:15 6:20pm from work.. So my 15 year old was
going to watch the younger 3 kids for a few mins. until my husband got home..
Sweet Pea was not having any part of that she was crying and crying... but then
was able to tell me she was just to scared to stay home with Princes(my oldest)
She said "I need an adult" At that point I knew it was symptoms she just doesn't get scared like that normally and she also loves when Princess is the babysitter..
I explained to her that daddy would be home very shortly after I left.. but the
look of fear that was in her eyes I knew it was pointless and I couldn't leave
her with Princess.. 1st off it wasn't fair to her and 2nd not fair to Aubrie to have
to have her deal with Sweet Pea so scared out of her mind.. So I was almost late
to the meetings because I called grandma and took sweet Pea over to grandmas house where she would feel safe. When i picked her up and drove her home.. she was so scared in the van looking out at the dark.. she wasn't crying but she looked so afraid sitting in the front seat next to me with her knees pulled up to her chest.. So I asked her if she was ok, she said no not really but I'm trying hard mommy. At home she followed me from room to room and tonight she wouldn't go to sleep in a bedroom be it mine or hers.. She wanted to sleep in the living room but not on the couch she wanted to lay on a blanket on the floor next to the couch.. and then I had to lay right on the ground with her with my arms wrapped around her at one point my 5 year old started yelling for me from his bed so I got up to see what he needed and Sweet Pea just cried and cried and cried the whole time I was gone, not just a normal cry but the freaked out sort of uncontrollable crying.. I was only gone no more then 3 mins, 5 year old only wanted me to cover him up and kiss him goodnight. Then I laid down with her again this time she wrapped her arms around me as so I wouldn't leave again.. and she continued to cry for about 40 more mins just because I left her for 3 mins. the bad thing was I had to pee really bad but knew if I moved she would start this freaked out crying all over again.. I held on till I couldn't any more then explained to her that mommy had to go to the bathroom.. she got all upset and started crying even harder she didn't follow me to the bathroom but went into full melt down crying hiding under a blanket while I was gone which wasn't very long at all.. instead of going to lay back with her I went right for the
Motrin.. had to fight with her but got it down her.. then I held her in my arms
laying on the hard floor in the living room.. for about 20 mins of her crying more when she stopped.. she rolled out of my arms said, good night mom and fell asleep.
I'm going to just sleep on the couch out in the living room tonight because I
have no idea what she might be like if she wakes up in the middle of the night..
but at least she is asleep now..
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
On Friday Nov 12, 2010
She woke up happy, went to school came home happy, went and played at grandma's then came home and her friend called asking her to spend the night and she wanted to..So she did, No one called me through the night and she is still at her friends house. They just called me asking if she could go to a baby shower with them.. She sounded all excited about going and sounded fine on the phone.. So she must be doing ok at the moment.
That is where we are at for now..
Still really busy so I'm going to cheat in my update.
I belong to a PANDAS email support group.. So though out this dentist stuff with Sweet Pea I have been updating the group. So I'm just going to copy and paste what I have been writing here, just changing the names to the kids blog names.
Here was the 1st update after the surgery on Tuesday.
~~~~~~~~~~~~~~~~~~~~~
I'll let ya know later if I'm seeing PANDAS flare up or not.. right now I can't
tell if it's normal crying and freaking out what would be expected from a 8 year
old who did not want to have this done and now has her whole mouth in pain, plus two injection sites at her arm which is hurting her and her stomach is upset because she is refusing to eat or drink anything yet I forced her antibiotic in her which normally gets upsets her stomach when taken on an empty belly. Right at the moment.. she seems fine but from the time she woke up at 1:30pm she has done nothing but cry off and on, more on then off, with alot of screaming at the top of her lungs about why did I do this to her and how bad her mouth hurts and how her arms hurts and how her head feels dizzy(from being put under) and just alot of laying in bed crying..
Was this normal waking up being sore and in pain stuff maybe.. Seeing how she isn't doing it now, she is still in bed but now has a Popsicle she is sucking on
and while she seems mad and snippy she isn't crying.. She only had a tiny melt down at the office before hand she started crying in the waiting room saying she wasn't going to have it done, she didn't want to be put to sleep she didn't want any IV's she didn't want a shot, That little crying turned into her running into the bathroom and locking herself in, Thankfully I thought about that before hand and I ran in after her so she locked us both in and it took me 15 mins of her screaming and crying about how much I must hate her to do this to her.. before I was able to get her to agree to come out of the bathroom then the person before her was running over so her 10:30am start time went till 11:30am which left her sitting in the waiting room thinking about it, which was NOT a good thing.. She cried that whole hour.. hiding curled up in a corner with her coat over her head... Once back there we had two game plans one was put her under by IV but if she wasn't taking part in that he was going to give her a quick shot to knock her out.. I knew before they even called her back it was going to be the shot.. so I held her on my lap she was flatly refusing to take off her coat so while I held her arms and upper body the dentist held her legs and the other guy pulled her coat down over her shoulder and gave her the shot. with in mins she was out..
Everything went well dental wise. she had 11 teeth worked on including 3 big cavities, one crown and a tooth pulled, she also lost a loose tooth while they were doing the work.
Now I wait and see what affect this has on her PANDAS wise.. I would be tempted to say all this crying is symptoms, but then I think it is also very normal to be afraid before being put to sleep and having dental work.. and over reacting might have become her norm since all this started I just don't really know.. Tomorrow either she will be over all the fair and pain and be back to herself.. or she could be worse and then I'll know what is going on.(I think LOL)
Just wanted to give you all an update.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~
This was written around 5pm on Tuesday Nov 10,2010
everyone was responding that they glad things went well and that she didn't seem to end up with symptoms.. My next update to them was this. It was written at around 7pm on Nov 10,2010
~~~~~~~~~~~~~~~~~~~~~~~~~
Thanks guys since I wrote last.. She has improved greatly.. She is now pleasant, sitting on the couch showing her little brother all the new stickers the dentist gave her, She ate some soft mac and cheese and she seems happy.. So at the moment all is going really well... I honestly didn't get my hopes up to see my sweet little girl today.. but at this moment she is herself. Thank you Lord..
one moment at a time is all i can ask.. praying she goes to bed as happy and wakes this way also.
~~~~~~~~~~~~~~~~~~~~~~~~~
My next update wasn't until 11:55PM on Nov 11,2010
here it is
~~~~~~~~~~~~~~~~~~~~~~~~~
Well she went to bed last night happy, just in pain and for some new reason she
is refusing Motrin.. I mean if I want to battle her and force it down her I
think I could I mean I'm still bigger then she is LOL.. But I figured if the
pain got that bad she knew I had Tylenol or Motrin that could help.. but she
would just cover her mouth and start crying No no no no every time I offered..
So she cried a bit here and there about pain last night.. but she slept
She seemed to have woke up happy this morning.. but about 9am I think it was
more PANDAS crying then pain crying at that point..
She didn't go to school because she still wasn't feeling well and still
couldn't really eat anything and was still in pain.. But she spent most of the day today crying.. at 1st I was thinking she was just hurting and that might have been some of it.. But when it got dark tonight her fear of the dark was back. I had to make sure every window was covered where she couldn't see the dark..
I had to go to the school for parent teacher conf. this evening at 6pm my
husband doesn't get home till 6:15 6:20pm from work.. So my 15 year old was
going to watch the younger 3 kids for a few mins. until my husband got home..
Sweet Pea was not having any part of that she was crying and crying... but then
was able to tell me she was just to scared to stay home with Princes(my oldest)
She said "I need an adult" At that point I knew it was symptoms she just doesn't get scared like that normally and she also loves when Princess is the babysitter..
I explained to her that daddy would be home very shortly after I left.. but the
look of fear that was in her eyes I knew it was pointless and I couldn't leave
her with Princess.. 1st off it wasn't fair to her and 2nd not fair to Aubrie to have
to have her deal with Sweet Pea so scared out of her mind.. So I was almost late
to the meetings because I called grandma and took sweet Pea over to grandmas house where she would feel safe. When i picked her up and drove her home.. she was so scared in the van looking out at the dark.. she wasn't crying but she looked so afraid sitting in the front seat next to me with her knees pulled up to her chest.. So I asked her if she was ok, she said no not really but I'm trying hard mommy. At home she followed me from room to room and tonight she wouldn't go to sleep in a bedroom be it mine or hers.. She wanted to sleep in the living room but not on the couch she wanted to lay on a blanket on the floor next to the couch.. and then I had to lay right on the ground with her with my arms wrapped around her at one point my 5 year old started yelling for me from his bed so I got up to see what he needed and Sweet Pea just cried and cried and cried the whole time I was gone, not just a normal cry but the freaked out sort of uncontrollable crying.. I was only gone no more then 3 mins, 5 year old only wanted me to cover him up and kiss him goodnight. Then I laid down with her again this time she wrapped her arms around me as so I wouldn't leave again.. and she continued to cry for about 40 more mins just because I left her for 3 mins. the bad thing was I had to pee really bad but knew if I moved she would start this freaked out crying all over again.. I held on till I couldn't any more then explained to her that mommy had to go to the bathroom.. she got all upset and started crying even harder she didn't follow me to the bathroom but went into full melt down crying hiding under a blanket while I was gone which wasn't very long at all.. instead of going to lay back with her I went right for the
Motrin.. had to fight with her but got it down her.. then I held her in my arms
laying on the hard floor in the living room.. for about 20 mins of her crying more when she stopped.. she rolled out of my arms said, good night mom and fell asleep.
I'm going to just sleep on the couch out in the living room tonight because I
have no idea what she might be like if she wakes up in the middle of the night..
but at least she is asleep now..
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
On Friday Nov 12, 2010
She woke up happy, went to school came home happy, went and played at grandma's then came home and her friend called asking her to spend the night and she wanted to..So she did, No one called me through the night and she is still at her friends house. They just called me asking if she could go to a baby shower with them.. She sounded all excited about going and sounded fine on the phone.. So she must be doing ok at the moment.
That is where we are at for now..
Monday, November 8, 2010
Filling in the blanks.
I did this jump from Oct 24th to Oct 29th between my last post about what was going on.. So I wanted to take a few minutes to fill in some blanks and then get all caught up till Nov 8, 2010
This was the 1st post covering Oct 17-24,2010
Oct 24 was a Sunday night and when I notices that red gum with the puss in it.
Oct 25th I emailed her doctor letting him know she had symptoms all weekend and that I found that infection in her gums. He had the office call me and bought her in to be seen on Oct 26th.,
Oct 26, at the office he confirmed it was an abscessed and he had us go to the hospital for more blood work. He also raised her antibiotic from 250mg twice a day to 500mg twice a day.
Oct 27 I called her new dentist.. who didn't want any part in this with her immune disorder
Oct 28 her old dentist agreed to see her but wanted her in to take a look the old dentist being a pediatric dentist who is an hour away from our house and does not except the kids secondary insurance. They are going to put her under and do the work every bit of work that needs done all at once.
this bring me to the post I wrote on Oct 29th, which was a bad day for Sweet pea. Here is that post.
Now getting caught up more..
she has been having symptoms every day since.. Not bad enough to keep her out of school, but often I wonder what is the point of sending her when it is a symptom day.. It is so hard for her to focus and I don't know how much of what is being taught is sinking in on those days.
My straight A student brought home an F on a paper last week... This is the girl who up until this point never had anything lower then a A on anything.
I have saw a drop in her graded papers on every single day I send her to school while she is having symptoms.
Her report card came home Friday(Nov 5, 2010)
It was the worst report card she has ever had.. Her normal all A+ was down to mostly A and then a B and a B-
I know this is still a good report card.. but It's NOT HER...
I can't even say to her you need to try harder because it's not that she isn't trying.. on a good non symptom day this wouldn't even be a problem when her brain is able to work at it's peak she could do all her work without effort.
She is in a gifted reading program because of what an above average reader she is and has been all along.. ONLY it was reading she got the B in(not the gifted reading but just her normal reading) The gifted program she hasn't been graded on.. But we have some issues to report with it..
She had those two good weeks symptom free at that time in her gifted reading they read 9 to 10 chapters in a book a week, do a question and answer paper on it and write about it.. Those two weeks of No symptoms she whipped those 9 chapters out in one night, could answer every question when she was done, and had no trouble at all writing about what she read in detail.
Since then with the PANDAS symptoms back.. She struggles to read 9 pages at a time and then after reading just those few pages she can't remember what she read or answer anything about it..
It's like she is just reading words and none of it is clicking with her at all..
The other night she was so upset by this that after trying to read the same page over and over just so that the words she was reading had any meaning.. she took the book and threw it across the room and started crying her eyes out.
She feels so lost and I feel lost because I don't know what to do to help her.
I need to some how let her teachers know about this.. but then what do I say.. Yes I see it happening and I can show them in her graded papers and such when it is happening.. But what can we do about it?? I mean like right now the last 17 days have all been symptom days.. So her school work is not up to par at all. but it's not like she can just not do it.. I don't think they will buy into me saying don't grade her until she is back to non symptom days when we don't even know when that will be..
Everyone, doctors and parents of PANDAS children are warning me that after her dental work things could get worse because any time they do stuff in the mouth it moves around the strep that hides in the mouth and it can seep into the blood stream. If she is struggling now not just with symptoms messing with her but with it affecting her school work.. what do I do if she gets worse???
I don't have answers just alot of questions..
Please keep Sweet Pea in your prayers
Her Dental surgery is set for This Wed the 10th at 10:20pm They are planning to have her under for about 2 hours with alot of dental work being done at that time...
I'm placing all of this in the Lords hands.. Thanks for your prayers.
This was the 1st post covering Oct 17-24,2010
Oct 24 was a Sunday night and when I notices that red gum with the puss in it.
Oct 25th I emailed her doctor letting him know she had symptoms all weekend and that I found that infection in her gums. He had the office call me and bought her in to be seen on Oct 26th.,
Oct 26, at the office he confirmed it was an abscessed and he had us go to the hospital for more blood work. He also raised her antibiotic from 250mg twice a day to 500mg twice a day.
Oct 27 I called her new dentist.. who didn't want any part in this with her immune disorder
Oct 28 her old dentist agreed to see her but wanted her in to take a look the old dentist being a pediatric dentist who is an hour away from our house and does not except the kids secondary insurance. They are going to put her under and do the work every bit of work that needs done all at once.
this bring me to the post I wrote on Oct 29th, which was a bad day for Sweet pea. Here is that post.
Now getting caught up more..
she has been having symptoms every day since.. Not bad enough to keep her out of school, but often I wonder what is the point of sending her when it is a symptom day.. It is so hard for her to focus and I don't know how much of what is being taught is sinking in on those days.
My straight A student brought home an F on a paper last week... This is the girl who up until this point never had anything lower then a A on anything.
I have saw a drop in her graded papers on every single day I send her to school while she is having symptoms.
Her report card came home Friday(Nov 5, 2010)
It was the worst report card she has ever had.. Her normal all A+ was down to mostly A and then a B and a B-
I know this is still a good report card.. but It's NOT HER...
I can't even say to her you need to try harder because it's not that she isn't trying.. on a good non symptom day this wouldn't even be a problem when her brain is able to work at it's peak she could do all her work without effort.
She is in a gifted reading program because of what an above average reader she is and has been all along.. ONLY it was reading she got the B in(not the gifted reading but just her normal reading) The gifted program she hasn't been graded on.. But we have some issues to report with it..
She had those two good weeks symptom free at that time in her gifted reading they read 9 to 10 chapters in a book a week, do a question and answer paper on it and write about it.. Those two weeks of No symptoms she whipped those 9 chapters out in one night, could answer every question when she was done, and had no trouble at all writing about what she read in detail.
Since then with the PANDAS symptoms back.. She struggles to read 9 pages at a time and then after reading just those few pages she can't remember what she read or answer anything about it..
It's like she is just reading words and none of it is clicking with her at all..
The other night she was so upset by this that after trying to read the same page over and over just so that the words she was reading had any meaning.. she took the book and threw it across the room and started crying her eyes out.
She feels so lost and I feel lost because I don't know what to do to help her.
I need to some how let her teachers know about this.. but then what do I say.. Yes I see it happening and I can show them in her graded papers and such when it is happening.. But what can we do about it?? I mean like right now the last 17 days have all been symptom days.. So her school work is not up to par at all. but it's not like she can just not do it.. I don't think they will buy into me saying don't grade her until she is back to non symptom days when we don't even know when that will be..
Everyone, doctors and parents of PANDAS children are warning me that after her dental work things could get worse because any time they do stuff in the mouth it moves around the strep that hides in the mouth and it can seep into the blood stream. If she is struggling now not just with symptoms messing with her but with it affecting her school work.. what do I do if she gets worse???
I don't have answers just alot of questions..
Please keep Sweet Pea in your prayers
Her Dental surgery is set for This Wed the 10th at 10:20pm They are planning to have her under for about 2 hours with alot of dental work being done at that time...
I'm placing all of this in the Lords hands.. Thanks for your prayers.
Friday, October 29, 2010
What a morning.
(There is alot I need to fill in the blanks between this post and the one below, but since this is fresh in my head since it happened today I wanted to get it typed out and posted. I'll try to fill in the blanks here shortly)
I don't think I would have believed it if I didn't see it, but Sweet Pea started having symptoms after leaving the dentist yesterday, They didn't do work but they poked around in her mouth for a good while even making her gums bleed. After leaving the dentist 1st she cried for about 20 mins after we left, then she was a little snippy with people the rest of the day.
We went to my grandmas to pick up the boys and my grandma wanted her to wear a winter coat which just about sent her over the edge, Grandma wanted her to stay at her house while I went home got there Halloween costumes and made cupcakes, but Sweet pea was having no part in it because "I'm not going to stay here if Grandma is going to yell at me" Even though Grandma never yelled at her.. So she came with me.
That night at trick or treat she started off pretty hyper, then went from that to snippy and loud, then at the end sort of mad.. stuff like "I don't care I want to go home" When I was explaining to her we were going home we were working our way home that is when she would snap "I don't care I want to go home now"
Once at home she was fine and went to sleep well, but woke up like a bear.
1st she wouldn't get up, she laid in bed 20 mins after I woke her up refusing to get up.. Next we were out of her favorite breakfast food, well really it's not her favorite it's just been sort of like an OCD thing, every morning she HAS to eat 1 and only 1 cookie and cream poptart.. but she ate the last one yesterday and I forgot to go to the store to get more.. This had her crying that she wasn't going to eat anything to which I started going though a long list of things I have and telling her she had to eat something because she had to take her antibiotic which would upset her stomach if she didn't' eat. When I told her i could make her a grilled cheese she said fine.(lately the only things she has been eating if the 1 poptart for breakfast, grilled cheese, mac n cheese, and chicken nuggets, though she doesn't seem to have any trouble with candy) So she did eat and did take her antibiotic. But then she wanted to get dressed in the bathroom(which seems to have become a thing with her, never changing her cloths anywhere but the bathroom) Only her big brother was using it and she couldn't get in there, which sent her into crying again. When he was done she walked in then came out screaming her head off at him that he stunk it up and she wouldn't go in to get dressed for another 10 mins.. understandable since he did stink it up.. but she was mad and angry and crying about it, just way over the top over reacting for a normal person, but seems to be par for the course with PANDAS symptoms.
Once dressed it was time to walk out the door, Mr Man was mins away from being late So I dropped him off at his school 1st since Sweet Pea and Little man's school doesn't start till 15 mins after Mr man.
This set Sweet Pea off even more she was crying and yelling kicking off her shoes screaming she isn't going to school now.. She worked herself up so much that it really was imposable for her to get out and get into school. So we dropped Little Man off and I brought Sweet Pea home with me(3rd time this month she was dressed for school then couldn't get there because of emotional stuff) where she continued to cry for 3 hours. Most of those 3 hours were just sob, but an occasional throwing the pillow across the room(or whatever she had close to her or in her hand would be tossed) And saying stuff like "Call Dr Trippe he will make this better" or "Why do I have to feel this way" and " Why does everything bad always happen to me"
It went from that to her working herself up over school and this made her cry more "I'm going to flunk 3rd grade" "I'm not going to pass, I just know it" "everyone knows I'm not going to pass" "I just want to be homed schooled that way I won't flunk when I feel like this" from there it went to "Why is everyone always being so mean to me" "no one likes me" "Everyone is going to make fun of me for being this way"
All the while she can't stop crying.. she can't really sit still every like 10 mins she is moving from one place to cry to the next. One minute wanting to be in my arms having me holding her to the next yelling at me because "YOU HATE ME"
After 2 hours of this, and her asking me to call her doctor about 3 different times. I made the call..
He issued more blood work(2nd round this week, 3rd round in the last 12 days)
He also told me that the 2nd set of numbers all came back pretty much in the normal range also.. and once again said we might need to treat the symptoms with Zoloft, which I really really really don't want to do. :-(
I know if these numbers come back in normal range he is going to push for the Zoloft hard. but I also have learned that in PANDAS girls there numbers are very often normal.. but I don't know if her doctor knows this.
Her doctor has been doing the best he can for her, but I'm really really thinking it is time to call the PANDAS doctor in NJ again and hand him Sweet Pea's case and let him be the one to treat her for PANDAS, and let her pediatrician go back to just being her normal when I'm sick or need a check up doctor.
When I was told by another PANDAS parent about girls numbers often showing normal they pointed me to this survey
In this survey they show a graph with symptoms.. out of these 21 symptoms Sweet pea has 12 of them.
GI issues
Sleep Issues
Depression
Restrictive eating
Phobias
Social Anxiety
Age Inappropriate Tantrums
Age Inappropriate Bedtime rituals
Age Inappropriate separation
Mood issues
Obsessions
Sensory Issues
And I guess she seems to follow suit when it comes to alot of the girls not having elevated ASO Titer
Mind you while she has had all of these symptoms she doesn't have them every day maybe the mood has been and issue most days since school started.. but the others ones come and go and can hit at any given time normally without warning.
I don't think I would have believed it if I didn't see it, but Sweet Pea started having symptoms after leaving the dentist yesterday, They didn't do work but they poked around in her mouth for a good while even making her gums bleed. After leaving the dentist 1st she cried for about 20 mins after we left, then she was a little snippy with people the rest of the day.
We went to my grandmas to pick up the boys and my grandma wanted her to wear a winter coat which just about sent her over the edge, Grandma wanted her to stay at her house while I went home got there Halloween costumes and made cupcakes, but Sweet pea was having no part in it because "I'm not going to stay here if Grandma is going to yell at me" Even though Grandma never yelled at her.. So she came with me.
That night at trick or treat she started off pretty hyper, then went from that to snippy and loud, then at the end sort of mad.. stuff like "I don't care I want to go home" When I was explaining to her we were going home we were working our way home that is when she would snap "I don't care I want to go home now"
Once at home she was fine and went to sleep well, but woke up like a bear.
1st she wouldn't get up, she laid in bed 20 mins after I woke her up refusing to get up.. Next we were out of her favorite breakfast food, well really it's not her favorite it's just been sort of like an OCD thing, every morning she HAS to eat 1 and only 1 cookie and cream poptart.. but she ate the last one yesterday and I forgot to go to the store to get more.. This had her crying that she wasn't going to eat anything to which I started going though a long list of things I have and telling her she had to eat something because she had to take her antibiotic which would upset her stomach if she didn't' eat. When I told her i could make her a grilled cheese she said fine.(lately the only things she has been eating if the 1 poptart for breakfast, grilled cheese, mac n cheese, and chicken nuggets, though she doesn't seem to have any trouble with candy) So she did eat and did take her antibiotic. But then she wanted to get dressed in the bathroom(which seems to have become a thing with her, never changing her cloths anywhere but the bathroom) Only her big brother was using it and she couldn't get in there, which sent her into crying again. When he was done she walked in then came out screaming her head off at him that he stunk it up and she wouldn't go in to get dressed for another 10 mins.. understandable since he did stink it up.. but she was mad and angry and crying about it, just way over the top over reacting for a normal person, but seems to be par for the course with PANDAS symptoms.
Once dressed it was time to walk out the door, Mr Man was mins away from being late So I dropped him off at his school 1st since Sweet Pea and Little man's school doesn't start till 15 mins after Mr man.
This set Sweet Pea off even more she was crying and yelling kicking off her shoes screaming she isn't going to school now.. She worked herself up so much that it really was imposable for her to get out and get into school. So we dropped Little Man off and I brought Sweet Pea home with me(3rd time this month she was dressed for school then couldn't get there because of emotional stuff) where she continued to cry for 3 hours. Most of those 3 hours were just sob, but an occasional throwing the pillow across the room(or whatever she had close to her or in her hand would be tossed) And saying stuff like "Call Dr Trippe he will make this better" or "Why do I have to feel this way" and " Why does everything bad always happen to me"
It went from that to her working herself up over school and this made her cry more "I'm going to flunk 3rd grade" "I'm not going to pass, I just know it" "everyone knows I'm not going to pass" "I just want to be homed schooled that way I won't flunk when I feel like this" from there it went to "Why is everyone always being so mean to me" "no one likes me" "Everyone is going to make fun of me for being this way"
All the while she can't stop crying.. she can't really sit still every like 10 mins she is moving from one place to cry to the next. One minute wanting to be in my arms having me holding her to the next yelling at me because "YOU HATE ME"
After 2 hours of this, and her asking me to call her doctor about 3 different times. I made the call..
He issued more blood work(2nd round this week, 3rd round in the last 12 days)
He also told me that the 2nd set of numbers all came back pretty much in the normal range also.. and once again said we might need to treat the symptoms with Zoloft, which I really really really don't want to do. :-(
I know if these numbers come back in normal range he is going to push for the Zoloft hard. but I also have learned that in PANDAS girls there numbers are very often normal.. but I don't know if her doctor knows this.
Her doctor has been doing the best he can for her, but I'm really really thinking it is time to call the PANDAS doctor in NJ again and hand him Sweet Pea's case and let him be the one to treat her for PANDAS, and let her pediatrician go back to just being her normal when I'm sick or need a check up doctor.
When I was told by another PANDAS parent about girls numbers often showing normal they pointed me to this survey
In this survey they show a graph with symptoms.. out of these 21 symptoms Sweet pea has 12 of them.
GI issues
Sleep Issues
Depression
Restrictive eating
Phobias
Social Anxiety
Age Inappropriate Tantrums
Age Inappropriate Bedtime rituals
Age Inappropriate separation
Mood issues
Obsessions
Sensory Issues
And I guess she seems to follow suit when it comes to alot of the girls not having elevated ASO Titer
Mind you while she has had all of these symptoms she doesn't have them every day maybe the mood has been and issue most days since school started.. but the others ones come and go and can hit at any given time normally without warning.
Tuesday, October 26, 2010
Still alot going on.. here is another update.
I guess I shouldn't have said no major PANDAS stuff since Oct 2nd when I wrote that post on the 17th.. ~sigh~
On The evening of Oct 17th Sweet Pea ended up sick upset stomach and diarrhea right before we were leaving for evening church. so she ended up home.
On Monday the 18th she was still sick, slight fever, and still all the stomach issues and her head was hurting.. Little Man ended up sick that day also.
The funny thing about this is that though she was sick there was still no signs of PANDAS symptoms at all
Tuesday they both woke up feeling good so off to school they went. On Tuesday evening Sweet Pea was complaining about a rash on her legs that was itching her.. I had no idea what sort of rash it was.. I didn't think strep rash because she still was not having symptoms. a few hours later Princess(my 14 year old) ended up with the same sort of rash on her arms
Wed Oct 20,2010 I kept Sweet pea home from school because I didn't know what the rash was and thought maybe it was break through chicken pox or something that could be spread on.. But still no symptoms of PANDAS which i was happy for..
Late that afternoon I took both her and Princess to the doctor to see what the rash was, turns out it was a viral rash brought one by the virus she must have had on Sunday and Monday(though Princess never was sick??)
As we were leaving the doctors office she started to act a little weird.. I'm not sure if it was normal kids acting weird stuff or some sort of OCD compulsions type stuff..
As we left the exam room and walked down the hall she didn't walk in front of any of the other exam room doors she jumped past them each and everyone of them.. sort of like walk walk walk, jump walk walk walk jump.. I didn't think a thing of it, she was happy and in a good mood So maybe she was just playing around.. Then when we reached the receptionist desk she ducked down so they wouldn't see her and sort of walked bend over past them.. still didn't think a thing of it.. once past the desk she stood up by the wall where the receptionist couldn't see her like nothing going on at all and asked if she could head out to the waiting room to see the fish.. I said yes..
So she opened up the door which in between the checking out and the waiting room and she walked upright right to where the check in window is and then she ducked down and walked under it.. This made me sort of start to wonder and watch her a little closer.. Once pasted it she walked upright over to the fish. I was still at check out but could see her though the glass windows at the check in side.. when she saw I was about down she walked back to me.. ducking again when she came to the check in window.. Weird.. but then it got better..
Once out in the parking lot she started jumping from white line to white line never walking on the black top just jumping from line to line.. Once again if I had never heard of PANDAS I would just think normal kid messing around sort of thing.. but I had to ask her what she was doing since I was starting to wonder if it was just a normal kids thing or not.. so I asked "what are you doing?"
She said "I have to do it this way" The words HAVE TO just jumped out at me.. so I asked "why?" she said "because I'm not aloud to walk on black" ????????
This had me wondering if it was an OCD thing where the rules that are going though your head make you do different things or her just messing around. but the whole black thing sure explained the way she was acting On Monday and Tuesday which I didn't think anything of until she did/said this..
Our driveway is black topped. All day Monday and Tuesday and even going to the van to get to the doctors on Wed.. She asked if I could carry her, she said "because I don't feel good" on Monday and "because I'm still tired from being sick" on Tuesday.. Wed she just asked if I could give her a piggy back ride to the van.. So when I thought about this.. She honestly had not walked to or from the van on our "black" topped driveway in days. And now here she was not walking on the black top of the doctors office parking lot she was jumping from white line to white line.. This was bugging me.. so on the way home I asked her "So if you can't walk on black how are you going to get into the house when we get home" She said "you can park close to the grass and I can jump out and just walk in the grass up to the back porch"(our driveway is in our back yard)
She had it all figured out, so me wanting to see how far this would go.. Parked the van the furthest away I could from the grass. Everyone got out of the van and walked up to the house except Sweet Pea.. she had the side van door open just standing in the van looking out for a good two minutes just looking out at the driveway.. I didn't bug with her I wanted to see what she would do.. Then she took a big jump towards the middle of the driveway sort of 1/2 way between the van and the yard, once there she sprinted into the grass, then she walked normal in the grass up to the porch.. and we didn't mention it again. I did have to go outside to shut the van door though..
Still don't know if that was an OCD thing or her messing around.. But that started a stream of other PANDAS symptom days.
On Thursday when she woke up she was extremely moody.. and crying.. but she went to school.. Thursday after school she almost had a meltdown that I hadn't got her signed up for her gymnastics like I said I would do after soccer ended(well soccer just ended on that Saturday I was going to wait till Nov) But to keep her from having the melt down I got her in for that nights class.. She did well in it..
But came home still moody.. She didn't sleep well that night..
and the next morning was bad.
Friday Oct 22,2010
She woke up in full PANDAS mood.. just jumping on everyone, little things making her crazy and setting her off.. That day wasn't going good for a normal person, couldn't find a brush which my oldest one had taken all 3 of our brushes and lost them or forgot them over the last few days and now our last brush was missing and my 10 year old Mr Man misplaced his comb. Sweet Pea was willing to just toss her hair into a ponytail but she was so moody about it and just chewing and chewing about it.. I didn't much care if I got Little Man's hair in place we were running behind.. BUT Mr Man the 10 year old had school pictures that day and I HAD to have his hair done so we were just going to be late until we found that comb.. we found it and got out the door 5 mins later then what we normally do..
That sent Sweet Pea over the top into a full out fit crying and crying and refusing to go to school because she was going to be late.. I couldn't get her under control she was gone in a PANDAS attack.. So she stayed home that day..
The rest of the weekend was much of the same.. crying and crying and crying.. with a few hours of normal Happy Sweet Pea here and there..
This brings us to Sunday night Oct 24th it was crazy hair night at Awanas.
She did her hair up in about 25 ponytails.. she was very pleased with it, she even did her friends hair just like it so she could go with us.. Once at church as she was about to walk into club at check in.. she had a mood swing from happy excited to just mad about something and started ripping out every rubber band out of her hair saying something in a mad voice about how she doesn't want them in her hair just get them out and she wasn't being to gentle when she took them out.. I didn't fuss with her I just gathered all the rubber bands from her and got her into club.
When club was over she was having issues with the van ride home and it being dark out, she didn't want to leave the van once we got home..
At bedtime it was time for her evening antibiotic and she was fighting me about taking it.. "I don't want to, you can't make me, Why do you hate me and make me take this all the time" SOOOOOOOOOOOOO Not like her.. she is normally the one who reminds me about it and happily willing goes and gets it.
I wasn't going to battle with her about this.. I mean this is what is keeping her well, and or going to make her better.. It wasn't an option.
So I filled it into the dropper and dropped it into her mouth..
This started her screaming at full force she didn't want to spit it out, she doesn't like being sticky, think that is the only reason she didn't.. So she was trying to scream while holding the meds in her mouth and keep it from dripping out and also not swallowing it..
The way she was screaming had her lip pulled over her gum and when she did that I saw it.. What I think is the cause of our problems..
Her gum was all red with a bump like thing of puss in it.. and abscessed.
I'll end this here because I'm tired and it's almost midnight and I'll continue this story tomorrow.
On The evening of Oct 17th Sweet Pea ended up sick upset stomach and diarrhea right before we were leaving for evening church. so she ended up home.
On Monday the 18th she was still sick, slight fever, and still all the stomach issues and her head was hurting.. Little Man ended up sick that day also.
The funny thing about this is that though she was sick there was still no signs of PANDAS symptoms at all
Tuesday they both woke up feeling good so off to school they went. On Tuesday evening Sweet Pea was complaining about a rash on her legs that was itching her.. I had no idea what sort of rash it was.. I didn't think strep rash because she still was not having symptoms. a few hours later Princess(my 14 year old) ended up with the same sort of rash on her arms
Wed Oct 20,2010 I kept Sweet pea home from school because I didn't know what the rash was and thought maybe it was break through chicken pox or something that could be spread on.. But still no symptoms of PANDAS which i was happy for..
Late that afternoon I took both her and Princess to the doctor to see what the rash was, turns out it was a viral rash brought one by the virus she must have had on Sunday and Monday(though Princess never was sick??)
As we were leaving the doctors office she started to act a little weird.. I'm not sure if it was normal kids acting weird stuff or some sort of OCD compulsions type stuff..
As we left the exam room and walked down the hall she didn't walk in front of any of the other exam room doors she jumped past them each and everyone of them.. sort of like walk walk walk, jump walk walk walk jump.. I didn't think a thing of it, she was happy and in a good mood So maybe she was just playing around.. Then when we reached the receptionist desk she ducked down so they wouldn't see her and sort of walked bend over past them.. still didn't think a thing of it.. once past the desk she stood up by the wall where the receptionist couldn't see her like nothing going on at all and asked if she could head out to the waiting room to see the fish.. I said yes..
So she opened up the door which in between the checking out and the waiting room and she walked upright right to where the check in window is and then she ducked down and walked under it.. This made me sort of start to wonder and watch her a little closer.. Once pasted it she walked upright over to the fish. I was still at check out but could see her though the glass windows at the check in side.. when she saw I was about down she walked back to me.. ducking again when she came to the check in window.. Weird.. but then it got better..
Once out in the parking lot she started jumping from white line to white line never walking on the black top just jumping from line to line.. Once again if I had never heard of PANDAS I would just think normal kid messing around sort of thing.. but I had to ask her what she was doing since I was starting to wonder if it was just a normal kids thing or not.. so I asked "what are you doing?"
She said "I have to do it this way" The words HAVE TO just jumped out at me.. so I asked "why?" she said "because I'm not aloud to walk on black" ????????
This had me wondering if it was an OCD thing where the rules that are going though your head make you do different things or her just messing around. but the whole black thing sure explained the way she was acting On Monday and Tuesday which I didn't think anything of until she did/said this..
Our driveway is black topped. All day Monday and Tuesday and even going to the van to get to the doctors on Wed.. She asked if I could carry her, she said "because I don't feel good" on Monday and "because I'm still tired from being sick" on Tuesday.. Wed she just asked if I could give her a piggy back ride to the van.. So when I thought about this.. She honestly had not walked to or from the van on our "black" topped driveway in days. And now here she was not walking on the black top of the doctors office parking lot she was jumping from white line to white line.. This was bugging me.. so on the way home I asked her "So if you can't walk on black how are you going to get into the house when we get home" She said "you can park close to the grass and I can jump out and just walk in the grass up to the back porch"(our driveway is in our back yard)
She had it all figured out, so me wanting to see how far this would go.. Parked the van the furthest away I could from the grass. Everyone got out of the van and walked up to the house except Sweet Pea.. she had the side van door open just standing in the van looking out for a good two minutes just looking out at the driveway.. I didn't bug with her I wanted to see what she would do.. Then she took a big jump towards the middle of the driveway sort of 1/2 way between the van and the yard, once there she sprinted into the grass, then she walked normal in the grass up to the porch.. and we didn't mention it again. I did have to go outside to shut the van door though..
Still don't know if that was an OCD thing or her messing around.. But that started a stream of other PANDAS symptom days.
On Thursday when she woke up she was extremely moody.. and crying.. but she went to school.. Thursday after school she almost had a meltdown that I hadn't got her signed up for her gymnastics like I said I would do after soccer ended(well soccer just ended on that Saturday I was going to wait till Nov) But to keep her from having the melt down I got her in for that nights class.. She did well in it..
But came home still moody.. She didn't sleep well that night..
and the next morning was bad.
Friday Oct 22,2010
She woke up in full PANDAS mood.. just jumping on everyone, little things making her crazy and setting her off.. That day wasn't going good for a normal person, couldn't find a brush which my oldest one had taken all 3 of our brushes and lost them or forgot them over the last few days and now our last brush was missing and my 10 year old Mr Man misplaced his comb. Sweet Pea was willing to just toss her hair into a ponytail but she was so moody about it and just chewing and chewing about it.. I didn't much care if I got Little Man's hair in place we were running behind.. BUT Mr Man the 10 year old had school pictures that day and I HAD to have his hair done so we were just going to be late until we found that comb.. we found it and got out the door 5 mins later then what we normally do..
That sent Sweet Pea over the top into a full out fit crying and crying and refusing to go to school because she was going to be late.. I couldn't get her under control she was gone in a PANDAS attack.. So she stayed home that day..
The rest of the weekend was much of the same.. crying and crying and crying.. with a few hours of normal Happy Sweet Pea here and there..
This brings us to Sunday night Oct 24th it was crazy hair night at Awanas.
She did her hair up in about 25 ponytails.. she was very pleased with it, she even did her friends hair just like it so she could go with us.. Once at church as she was about to walk into club at check in.. she had a mood swing from happy excited to just mad about something and started ripping out every rubber band out of her hair saying something in a mad voice about how she doesn't want them in her hair just get them out and she wasn't being to gentle when she took them out.. I didn't fuss with her I just gathered all the rubber bands from her and got her into club.
When club was over she was having issues with the van ride home and it being dark out, she didn't want to leave the van once we got home..
At bedtime it was time for her evening antibiotic and she was fighting me about taking it.. "I don't want to, you can't make me, Why do you hate me and make me take this all the time" SOOOOOOOOOOOOO Not like her.. she is normally the one who reminds me about it and happily willing goes and gets it.
I wasn't going to battle with her about this.. I mean this is what is keeping her well, and or going to make her better.. It wasn't an option.
So I filled it into the dropper and dropped it into her mouth..
This started her screaming at full force she didn't want to spit it out, she doesn't like being sticky, think that is the only reason she didn't.. So she was trying to scream while holding the meds in her mouth and keep it from dripping out and also not swallowing it..
The way she was screaming had her lip pulled over her gum and when she did that I saw it.. What I think is the cause of our problems..
Her gum was all red with a bump like thing of puss in it.. and abscessed.
I'll end this here because I'm tired and it's almost midnight and I'll continue this story tomorrow.
Saturday, September 4, 2010
Another not so well week.
This was Sweet Pea's 2nd week of school and it wasn't the greatest. Symptoms every day.
Monday in the evening she started itching and itching and just fidgeting and saying it felt like 100's of little bugs were crawling all over her ONLY there wasn't anything there,no rash, no redness, nothing that would make her feel the need to itch. Motrin made it all go away
Tuesday she was perfectly fine and happy having a great old time at her Sisters away volleyball game, on our way home I heard he talking I looked in the backseat She was looking up at the roof and talking to herself and with in seconds she was crying her eyes out uncontrollably. Then when we got out of the car she was hanging on me and not wanting to leave my side. I got Motrin in her ASAP and with in 15 mins she was willing to let go of me and with in 30 mins she was back to happy, playing and her old normal self.
Thursday I was on the phone with my grandma I was pretty much in tears explaining all that has been going on, Grandma stopped me and said Lets Praying now.. She prayed with me right there on the phone.. This was in the afternoon while Sweet Pea was still at school. When she came home on Thursday, she was happy, normal, not sad.. We went to princess's volleyball game she did great all though that and was symptom free all night long..
GOT TO LOVE THE POWER OF PRAY!!!!!!!!
Friday she seemed great after school also.. I don't know how the whole night went if she had symptoms or not because she went Friday evening to spend the night at my moms right there means she must have been feeling alright or she wouldn't have wanted to go.. Hopefully she did fine the rest of the evening, I'll find out later today.
Monday in the evening she started itching and itching and just fidgeting and saying it felt like 100's of little bugs were crawling all over her ONLY there wasn't anything there,no rash, no redness, nothing that would make her feel the need to itch. Motrin made it all go away
Tuesday she was perfectly fine and happy having a great old time at her Sisters away volleyball game, on our way home I heard he talking I looked in the backseat She was looking up at the roof and talking to herself and with in seconds she was crying her eyes out uncontrollably. Then when we got out of the car she was hanging on me and not wanting to leave my side. I got Motrin in her ASAP and with in 15 mins she was willing to let go of me and with in 30 mins she was back to happy, playing and her old normal self.
Thursday I was on the phone with my grandma I was pretty much in tears explaining all that has been going on, Grandma stopped me and said Lets Praying now.. She prayed with me right there on the phone.. This was in the afternoon while Sweet Pea was still at school. When she came home on Thursday, she was happy, normal, not sad.. We went to princess's volleyball game she did great all though that and was symptom free all night long..
GOT TO LOVE THE POWER OF PRAY!!!!!!!!
Friday she seemed great after school also.. I don't know how the whole night went if she had symptoms or not because she went Friday evening to spend the night at my moms right there means she must have been feeling alright or she wouldn't have wanted to go.. Hopefully she did fine the rest of the evening, I'll find out later today.
Sunday, August 29, 2010
It has not been a good week.
Every day this week Sweet Pea has had some form of PANDAS symptoms. :-(
most of them mild.. mood, crying, biting your head off, and most the time Motrin helps her deal with that.
but tonight we had something new happen..
Sweet Pea has been a mess all night..
She has been crying all day about her head hurting her.. started out with her
thinking something was crawling in her hair and she wanted me to check her for
lice.. Nothing.. then it went to it felt like a bee stinging her over and over
right in the same spot on her head..
that is when it hit me this is sort of like the sensory stuff where her cloths
were hurting her.. something in her brain right now is telling her she is
feeling this pain on or in her head.. ~sigh~
I gave her the Motrin but one dose didn't cut it.. an hour and half later she
was just crying out of control that her head was hurting something was biting
her on the head..(trust me I looked to make sure there was nothing on her head)
but she was pretty much gone because if there was something there or not doesn't
matter, it feels like that to her and that at that time was her reality.. Great
big ~sigh~ So I gave her another dose of Motrin and by 10pm she had stopped
crying and was able to go to sleep..
OMG if this is already happening and she has only had one week of school.. what
do I do????? I figured a few moody days here and there.. I didn't expect to see
some of the bigger pandas symptoms coming this early.. I figured I wouldn 't see
that till strep was going around the school big time or something..
and I don't even know if this is a Sensory symptom or a hallucination symptom..
guess it doesn't matter either way.. but when the doctor asked about
hallucination before when this started I was able to say No she has never had
them...
She also wouldn't eat anything today.. She at one grill chess sandwich and that
was it all day long..which she has never been a big eater but that is a little
scary to me.. She just kept saying I'm not hungry I'm not hungry..
I'm praying she is ok in the morning.. I'll give her a double dose of Motrin
before school.. but like i said before that doesn't stop her brain from being
under attack it just mask the symptoms of it. :-(
I wish I knew if someone at her school had strep or is a carrier.. Cuz a carrier
wouldn't even know they were passing strep around..
honestly I want to put her in a bubble, but I know I can't .. and I want her to
have a normal life but the more we go on with this, the more I wonder if that is
possible.
Tomorrow I also start a 3 week subbing job(did i ever mention here that I'm a sub at our local school district?) In any case.. it's a 3 week assignment all day and I'm worried I might need to bring Sweet Pea home for a week or so.. if she keeps getting bad like this.. ~sigh~
Just pray for her and that God will be done in this.. Thanks.
most of them mild.. mood, crying, biting your head off, and most the time Motrin helps her deal with that.
but tonight we had something new happen..
Sweet Pea has been a mess all night..
She has been crying all day about her head hurting her.. started out with her
thinking something was crawling in her hair and she wanted me to check her for
lice.. Nothing.. then it went to it felt like a bee stinging her over and over
right in the same spot on her head..
that is when it hit me this is sort of like the sensory stuff where her cloths
were hurting her.. something in her brain right now is telling her she is
feeling this pain on or in her head.. ~sigh~
I gave her the Motrin but one dose didn't cut it.. an hour and half later she
was just crying out of control that her head was hurting something was biting
her on the head..(trust me I looked to make sure there was nothing on her head)
but she was pretty much gone because if there was something there or not doesn't
matter, it feels like that to her and that at that time was her reality.. Great
big ~sigh~ So I gave her another dose of Motrin and by 10pm she had stopped
crying and was able to go to sleep..
OMG if this is already happening and she has only had one week of school.. what
do I do????? I figured a few moody days here and there.. I didn't expect to see
some of the bigger pandas symptoms coming this early.. I figured I wouldn 't see
that till strep was going around the school big time or something..
and I don't even know if this is a Sensory symptom or a hallucination symptom..
guess it doesn't matter either way.. but when the doctor asked about
hallucination before when this started I was able to say No she has never had
them...
She also wouldn't eat anything today.. She at one grill chess sandwich and that
was it all day long..which she has never been a big eater but that is a little
scary to me.. She just kept saying I'm not hungry I'm not hungry..
I'm praying she is ok in the morning.. I'll give her a double dose of Motrin
before school.. but like i said before that doesn't stop her brain from being
under attack it just mask the symptoms of it. :-(
I wish I knew if someone at her school had strep or is a carrier.. Cuz a carrier
wouldn't even know they were passing strep around..
honestly I want to put her in a bubble, but I know I can't .. and I want her to
have a normal life but the more we go on with this, the more I wonder if that is
possible.
Tomorrow I also start a 3 week subbing job(did i ever mention here that I'm a sub at our local school district?) In any case.. it's a 3 week assignment all day and I'm worried I might need to bring Sweet Pea home for a week or so.. if she keeps getting bad like this.. ~sigh~
Just pray for her and that God will be done in this.. Thanks.
Monday, August 23, 2010
Alot of stuff going on.
Alot has been going on since the last post. In good news most of the days since then have been PANDAS free days. I did say most which means we had a few symptoms days in there also..
On Aug 16, 2010 I got tired of not getting phone calls returned and emails answered, so I went to the school and right to the principle where he had to talk with me and tell me what all I needed to get this 504 thing in place. I had been giving him the benefit of the doubt, thinking maybe he wasn't checking his emails or that he hadn't been at the school listening to my messages.. but NOPE.. When I introduced myself and asked if I could have a minute of his time to talk About Sweet Pea, he said "yes I got your emails and messages" I wanted to scream then why didn't you respond?????? but i just smiled and was nice..
Any ways it looks like it won't be until the 2nd or 3rd week of school when a meeting will take place about the 504.. In the mean time I'm going to have to get alot of paper work in place.. from the doctors and any information I can get my hands on that explains PANDAS to give to the school to get the 504.
But the 504 is important for her to have So that she can do her school work at home when strep is going around the school, or so that she can be given extended time for her work if she is having symptom days that keep her from being able to do her work in any way shape or form..
I'm going to ask that her class room be cleaned and sanitized daily.. but from what my doctor says that is a waist of my time because it won't happen.. but I'm going to try also.. I'm asking in it that she can have bottles of water at her desk or in gym class so she doesn't have to drink out of the drinking fountain, I'm asking that she can keep hand sanitizer with her, and that she can whip down her desk with the Lysol whips after others kids have sat at her desk or when she sits at a different desk(they change class rooms for different subjects, so for Math she might have to sit at another kids desk, then go back to her room where someone was just sitting in her desk for history)
I'll keep you posted on how this goes.
On Aug 17,2010
It was kids day at our county fair, kids get in free.. So we took the family to that.. Sweet Pea had a blast.. at the end before we left she cut her hand open, she was on the spinning tea cup sort of ride and was spinning it and spinning it and then she stopped but left he hand on it and it ripped the skin off her hand.. She did ok with that, as far as didn't freak out or cry her eyes out loudly.. just had tears while we went for first aide.
ONLY.. I WASN'T THINKING
I wasn't thinking about the germs she could pick up.. ripping skin off her hand or not.. the day before I had been so going crazy about keeping germs away from her at school, then I took her to one of the most germ infested places she could go.. thousands of people.. thousands of kids touching those rides she had her hands all over.. I just wasn't thinking at all...
And Sweet Pea paid the price for it on Wed.
Aug 18, 2010
The morning started out great.. Mr Man(my 10 year old ds), Sweet Pea(who is 8) and Little Man(my 5 yr old ds) all went with my grandpa, there Great Grandpa While DH and I went to Princesses(my 14 yr old dd) High School volleyball scrimmage..
Once again I wasn't thinking.. Grandpa had taken the 3 younger kids putt putting(which wouldn't have been bad if I would have thought to take a Lysol whip to clean the club and ball of germs ) and then to Burger Kings play land(an other one of those places where germs fester ugh) I guess I need to get use to thinking like that because putt putt and play lands have always been a norm for us as a fun treat for the kids...this was all in the morning and by lunch time..
Sweet Pea was fine in the morning, in the afternoon she was having the milder symptom of biting peoples heads off...
That evening was to be her 1st soccer practice.. ONLY... She was having the issues of the sensory symptoms of PANDAS happening(this was only the 2nd time since starting treatment that this has happened) The soccer socks, shine guards and shoes, were hurting her really bad.. She was crying and crying so I told her NOT to wear them.. she could just go to practice in her tennis shoes.. but by then she was just pretty much gone, crying and crying and saying she wanted o quite soccer, she wasn't going to play.
Mr Man told her she had to because mom already paid and that was a waist of money, Him saying that didn't help at all, it made her feel bad and started her crying more I told him to just leave her alone, and we came home before her practice even started.. I got her Motrin right away and with in 40 mins she was happy again nothing was hurting her.
I went back to her soccer practice and had a talk with her coach explaining to her that Sweet Pea has Pandas and what it does and how at the moment when she put her stuff on it felt like knives were gabbing into her, and I explained there might be times she won't make it due to this, but that with in minutes she could be fine again and ready to play.. I told her I could pull her from the team if she thought that was best but I would like to keep her on, She said that was fine she understood.. and that they were having another practice on Thursday.
Aug 19,2010
After the major symptom day she had on Wed I started Sweet Pea of with Motrin along with her antibiotic that morning and kept Motrin in her every 8 hours.. She did fine, she went to soccer and had a blast. While at soccer he 8 hours came up for the Motrin and I just skipped it.. an hour later she was clinging to me, scared to leave my side(we were at my moms house where she had bagged to go spend the night) she was wanting to come home(after just bagging for me to take her there) I could tell it was a symptom so I got her another shot of Motrin in her and just stayed with her in my lap at my moms while it kicked in.. with in 30 mins she was happy, and playing and I left her there to spend the night.
Aug 20,2010
she was symptom free
THANK YOU LORD
Aug 21,2010
she had her 1st soccer game of the season they lost but she had a blast..
Though I got sick that night.. head killing me, body hurting all over and couldn't keep food down.. blah...
Aug 22, I was still sick so didn't go to church.. but the kids did and went to the church picnic and had a great time it was at a member of our church house and they live right on the river.. the kids had a blast playing in it..
That brings us to today Aug 23, 2010
Sweet Pea is still sleeping.. it's there last day to sleep in so I'm not waking her, school starts tomorrow.. So far we have had 3 symptom free day in a row I'm praying we can keep going, yet fearing with the start of school it might not be that great of chances..
Keep her in your prayers with the start of school tomorrow..
Wednesday, July 21, 2010
Has it been 5 days already????
WOW it doesn't seem like it has been that long since I posted..
in any case they haven't been that great of days.. They could have been worse.. but they could have been alot better also..
Saturday July 17th..
Sweet Pea wasn't with me so I really couldn't tell ya how she did.. She had spent the night at her friends house Friday night and then spent the whole day with her friends swimming and such and didn't get home till 7pm.. I called and checked on her a few times the mother of the girl she was with told me she was doing fine no issues or anything(when i asked how he mood was) But when Sweet Pea got home... I could see she was having mood issues.. well mood swing sort of thing that or an anxiety issues because when it got dark she was crying and afraid to stay alone.. crying might not be the word I'm looking for.. she was freaking out crying uncontrollably when I told her it was bed time and to sleep in her room.. I got her out of bed gave her Motrin and let her stay up for 30 mins.. At the end of the 30 mins she was her normal happy peaceful self I told her it was time to go to bed in her own room and off she went with out a single tear or complaint and she was sound asleep with in 15 minutes.
Sunday July 18, 2010
WOW what a morning.. it reminded me of every morning for over a year back before she was being treated for the PANDAS.... She was crying, biting peoples heads off... fighting about her cloths not feeling right(which is a sensory issue) since I now know when she says her cloths are hurting her, that they really are hurting her I have to let her wear what isn't hurting her.. but with the sensory issues, her mood and alot of crying.. we almost didn't make it to church that morning.. I did get her Motrin but the one single dose didn't help so I gave her a another dose which puts it up to prescription dosage..that kicked in enough to get her to stop crying and to be happy in her baggy sundress.. and helped a bit with her biting peoples heads off.. and we were able to get to church.. my grandma was her teacher for Jr Church and she told me that she was still really moody and short with people in Jr. church though..
She continued to do this all day long.. Motrin kept her functioning but she was never perfect on Sunday..
Monday July 19, 2010
She had a good day.. Not a perfect day.. but 99.9% better then Sunday.
She wasn't biting peoples heads off and she wasn't crying at a drop of a hat and she didn't have any fear of anything.. but she was having the sensory issues to a point.. cloths were bugging her so she wore baggier cloths..nothing like 10 times to big on her the cloths fit her that she wore but it was the soft cotton elastic waist stuff and bigger t shirts.. then her normal cloths that she just got comfy and happy with again..
Tuesday July 20,2010
The sensory issues with the cloths were mild that day.. she wore normal cloths.. except wouldn't wear her underpants said they were hurting her she was happy with her bathing suit bottom though(which last week she was complaining was too big and falling off) She had an appt with D her counsellor which went really well... but Sweet Pea was sad alot of the day and didn't know what or why she was sad about.. After we got home in the afternoon.. I got some Motrin in her and she was back to her happy little self.. She had a sleep over at another friends house and did great all night long..
Today July 21, 2010
today wasn't bad bad.. but we still were having underwear issues..
The bad stuff today which I now have to watch with Sweet pea is this..
Last night in the middle of the night Little Man(our 5 year old) got sick... and has been having nastiness coming out his back side all day...
Then if that wasn't enough around 8:30pm this evening Princess(our 14 year old) said she didn't feel well said her head was killing her and her throat was hurting her(which always grabs our attention with Sweet Peas issues with strep) I took Princess temp and it was 102.6.. doctors offices are closed... So Princess wont be seeing a doctor till morning time.. and if it is strep I'm sure Sweet Pea has already been exposed but Sweet Pea is now spending the night at my moms house and will be staying there until we find out what is going on with Little Man and Princess..
In other news Mr Man(our 10 year old) and Sweet Pea are to be leaving for over night Church summer camp on Monday... Please Please pray they are all well by then.. and that Sweet Pea has a PANDAS free week while at camp(I won't be there to watch her and there is no way to explain her issues where the college student who will be her councillor will under stand about the mood, crying, fears or clothing stuff) So I'm taking a leap of faith and putting my little girls in Gods hands to do His perfect will for her while she is off at camp(which I guess I do every day but normally I'm there to see how His plan plays out) So Please keep her and all the campers going to camp in your prayers.
in any case they haven't been that great of days.. They could have been worse.. but they could have been alot better also..
Saturday July 17th..
Sweet Pea wasn't with me so I really couldn't tell ya how she did.. She had spent the night at her friends house Friday night and then spent the whole day with her friends swimming and such and didn't get home till 7pm.. I called and checked on her a few times the mother of the girl she was with told me she was doing fine no issues or anything(when i asked how he mood was) But when Sweet Pea got home... I could see she was having mood issues.. well mood swing sort of thing that or an anxiety issues because when it got dark she was crying and afraid to stay alone.. crying might not be the word I'm looking for.. she was freaking out crying uncontrollably when I told her it was bed time and to sleep in her room.. I got her out of bed gave her Motrin and let her stay up for 30 mins.. At the end of the 30 mins she was her normal happy peaceful self I told her it was time to go to bed in her own room and off she went with out a single tear or complaint and she was sound asleep with in 15 minutes.
Sunday July 18, 2010
WOW what a morning.. it reminded me of every morning for over a year back before she was being treated for the PANDAS.... She was crying, biting peoples heads off... fighting about her cloths not feeling right(which is a sensory issue) since I now know when she says her cloths are hurting her, that they really are hurting her I have to let her wear what isn't hurting her.. but with the sensory issues, her mood and alot of crying.. we almost didn't make it to church that morning.. I did get her Motrin but the one single dose didn't help so I gave her a another dose which puts it up to prescription dosage..that kicked in enough to get her to stop crying and to be happy in her baggy sundress.. and helped a bit with her biting peoples heads off.. and we were able to get to church.. my grandma was her teacher for Jr Church and she told me that she was still really moody and short with people in Jr. church though..
She continued to do this all day long.. Motrin kept her functioning but she was never perfect on Sunday..
Monday July 19, 2010
She had a good day.. Not a perfect day.. but 99.9% better then Sunday.
She wasn't biting peoples heads off and she wasn't crying at a drop of a hat and she didn't have any fear of anything.. but she was having the sensory issues to a point.. cloths were bugging her so she wore baggier cloths..nothing like 10 times to big on her the cloths fit her that she wore but it was the soft cotton elastic waist stuff and bigger t shirts.. then her normal cloths that she just got comfy and happy with again..
Tuesday July 20,2010
The sensory issues with the cloths were mild that day.. she wore normal cloths.. except wouldn't wear her underpants said they were hurting her she was happy with her bathing suit bottom though(which last week she was complaining was too big and falling off) She had an appt with D her counsellor which went really well... but Sweet Pea was sad alot of the day and didn't know what or why she was sad about.. After we got home in the afternoon.. I got some Motrin in her and she was back to her happy little self.. She had a sleep over at another friends house and did great all night long..
Today July 21, 2010
today wasn't bad bad.. but we still were having underwear issues..
The bad stuff today which I now have to watch with Sweet pea is this..
Last night in the middle of the night Little Man(our 5 year old) got sick... and has been having nastiness coming out his back side all day...
Then if that wasn't enough around 8:30pm this evening Princess(our 14 year old) said she didn't feel well said her head was killing her and her throat was hurting her(which always grabs our attention with Sweet Peas issues with strep) I took Princess temp and it was 102.6.. doctors offices are closed... So Princess wont be seeing a doctor till morning time.. and if it is strep I'm sure Sweet Pea has already been exposed but Sweet Pea is now spending the night at my moms house and will be staying there until we find out what is going on with Little Man and Princess..
In other news Mr Man(our 10 year old) and Sweet Pea are to be leaving for over night Church summer camp on Monday... Please Please pray they are all well by then.. and that Sweet Pea has a PANDAS free week while at camp(I won't be there to watch her and there is no way to explain her issues where the college student who will be her councillor will under stand about the mood, crying, fears or clothing stuff) So I'm taking a leap of faith and putting my little girls in Gods hands to do His perfect will for her while she is off at camp(which I guess I do every day but normally I'm there to see how His plan plays out) So Please keep her and all the campers going to camp in your prayers.
Saturday, July 17, 2010
July 14, 15, & 16
Sweet Pea didn't complain or have issues the rest of the day on the 13th and her cough even seem to get better so I didn't call the doctor. She did great at VBS and wonderful until bedtime when she got clingy again and ended up sleeping in my bed again.. around 3am on the 14th she woke up crying her eyes out saying her ear was hurting.. I got her Motrin and she cried a little more but then went back to sleep..
She woke up that morning feeling fine... Went to VBS had a good time came home was doing well.. Then I took the kids to my grandmas to play while I went to the oldest one double header softball game..
When I got back a close to 9pm Sweet Pea had been crying her eyes out for a good hour that her hear was hurting her.. at Grandma's she had had sweet oil put in her ear for the pain, took Motrin and Tylenol.. but it didn't seem to touch the pain.. she screamed the whole way home and even at home was just screaming here head off that it hurts it hurts.. I want a doctor make it stop and on and on.. I figured all the home stuff I could did for her we did already even the heating pad.. So between 10 and 10:30pm we took her to the hospital.. I didn't see how we could wait till the morning.. 1)due to the sort of pain she was having and 2) I feared that maybe some of the PANDAS stuff was in play seeing her screaming like that brought back memories of the last time she had strep in March/April.. she wasn't that bad but it reminded me of it..
At the hospital when I told them all we did at home and that she is on a daily antibiotic they were sure it was swimmers ear because the antibiotic should kill bacteria that would cause an ear infection.. THEY WERE WRONG...
After looking at her.. it is a middle/inner ear infection.. they gave her another antibiotic for it.. the ER doctor told me I could just give her both he thought but told me to check with her doctor in the morning.. They also gave her ear drops for pain..
She slept well that night.. but we kept her home from VBS on Thursday due to the hour she went to bed on Wed night..
Thursday she didn't wake up till 11:30am but seemed much better ear and pain wise.. I had called the doctor and was told to stop her A/B she is on for the PANDAS and just do the stuff we got for the ear infection..(it's only a 5 day thing) and then start her back up on the PANDAS stuff when the ear stuff is done.
So that is what we did.. on Thursday.. Thursday was a good day for her.. no issues or pain or anything. Then came Friday..
Friday July 16..
This was a PANDAS day.. now Pandas is caused by strep.. being exposed and having your body make antibodies that then turns on the child and attacks there brains..
So Now this has me wondering if.. all that coughing was strep.. or is this ear infection caused by some sort of strep or if she has come in contact with some sort of strep at VBS or the hospital this week..
Because Friday morning she woke up a tad on the moody side nothing major.. she was all excited for VBS... she loves it and always has.. but when we got there.. she had that I'm scared out of my mind look on her face and she started crying her eyes out and hanging on my leg saying she didn't want to go just take me home, I just want to go home.. That is PANDAS.. the anxiety for no real reason part.. the fear that she can't explain... UGH UGH UGH.. she wasn't beyond reason though.. and I was able to talk her into staying with a plan if she felt she couldn't handle it.. she feels safer if we have a plan laid out of what to do.. So that gave her what she needed to say ok I'll stay and see if I can handle it..
Because Friday morning she woke up a tad on the moody side nothing major.. she was all excited for VBS... she loves it and always has.. but when we got there.. she had that I'm scared out of my mind look on her face and she started crying her eyes out and hanging on my leg saying she didn't want to go just take me home, I just want to go home.. That is PANDAS.. the anxiety for no real reason part.. the fear that she can't explain... UGH UGH UGH.. she wasn't beyond reason though.. and I was able to talk her into staying with a plan if she felt she couldn't handle it.. she feels safer if we have a plan laid out of what to do.. So that gave her what she needed to say ok I'll stay and see if I can handle it..
She stayed the whole time and was totally excited that she won the weeks visitor competition for her 1-3rd graders.. She won a new bike...
But when we got home after VBS.. she was a mess.. not the fear or crying... but the issues of snapping at people, yelling at them, biting peoples heads off... I was out of Motrin so I sent DH to the store to get some.. she was pretty nasty to everyone who walked past her for a good while.. When DH got home I just simply told her it was time for her medicine.. gave her the Motrin and the new A/B which is a once a day thing.. and I kid you not.. with in 30 mins.. she was my perfectly sweet, loving caring little girl again.. all the fear and anger stuff just gone.. just like that..
We went to the VBS Carnival/ Closing program she had a blast was her fun loving out going little self and even spent the night at a friends house last night..
Here are some shots from the carnival and her getting the new bike.NOW I wonder what put her little brain under attack again???? ear infection??? coming in contact with strep from some other place or person???? or is it the change of antibiotics???? I'm clueless
I do see the doctor with her Monday for a follow up on the ear infection and I'll be mentioning this and asking these questions.. but I'm betting he doesn't have answers for me either..
Tuesday, July 13, 2010
The Last 6 Days
July 6th.. we had a very good day.. no real Pandas symptoms.. Sweet Pea had her appt with the counselor, and after that we got lunch and then got her home to go to her ball game Which they won, her team is undefeated so far..
After that I drove her to my parents house to spend the night with my nieces.. nd she did great that night.
July 7th I didn't see her at all, but my mom said it was a PANDAS free day..
July 8th.. I went over to my parents to see my kids and visit with my sister and family.. After dinner that night I was ready to leave all the kids wanted to spend the night again... When Sweet Pea went to give me a kiss and hug goodbye she felt like she was burning up.. sure enough she was running a fever.. I brought her home.. She slept the whole way home.. I gave her Motrin for the fever and she slept the whole night.
July 9th.. I thought about calling the doctor and getting her in... she still was running a fever.. ONLY She was having NO PANDAS symptoms so I figured it had to be some sort of virus seeing she is already on an antibiotic which would have killed anything that wasn't virus or should have anyways.. So I figured if she wasn't having PANDAS issues I would just let it run its course.
July 10th.. her fever broke.. and she was good the whole day until bedtime.. when she started having fears of the dark.. be it normal childhood not wanting to sleep in a room alone or part of the PANDAS stuff I'm not 100% sure because I just gave her Motrin and let her sleep with me.. OH and at that time her fever was back..
July 11th.. no fever but moodiness and fear of the dark was there in full force.. she also was having issues with a dress I wanted her to wear to church.. saying it was bugging her.. So I didn't force the issue just let her pick what she wanted.. once again not sure if that "bugging" her with the dress was her just not wanting to wear the dress or if it was part of the sensory issues stuff from the PANDAS.. The way she was crying and acting about it reminded me of the PANDAS so I thought on Monday I would take her to the doctor..
July 12th. She was perfectly fine.. no PANDAS issues, no fever.. perfectly happy.. slept in her own room.. had a friend spend the night, went to VBS...
So I didn't call the doctor... She still has a nasty cough(which while she was sick her symptoms was fever, couch and stuffy nose) So I guess I wait and see how she is today after VBS(today being the 13th) if she still has a super bad cough I still might call the doctor, just to make sure it is just a cold and nothing strep related...
This is a bit confusing.. if she would have had NO issues PANDAS related at all.. I would not be calling the doctor.. but since there was a day or two with some issues.. and she is still coughing.. It has me wondering about strep..
So that is where we are at the moment..
After that I drove her to my parents house to spend the night with my nieces.. nd she did great that night.
July 7th I didn't see her at all, but my mom said it was a PANDAS free day..
July 8th.. I went over to my parents to see my kids and visit with my sister and family.. After dinner that night I was ready to leave all the kids wanted to spend the night again... When Sweet Pea went to give me a kiss and hug goodbye she felt like she was burning up.. sure enough she was running a fever.. I brought her home.. She slept the whole way home.. I gave her Motrin for the fever and she slept the whole night.
July 9th.. I thought about calling the doctor and getting her in... she still was running a fever.. ONLY She was having NO PANDAS symptoms so I figured it had to be some sort of virus seeing she is already on an antibiotic which would have killed anything that wasn't virus or should have anyways.. So I figured if she wasn't having PANDAS issues I would just let it run its course.
July 10th.. her fever broke.. and she was good the whole day until bedtime.. when she started having fears of the dark.. be it normal childhood not wanting to sleep in a room alone or part of the PANDAS stuff I'm not 100% sure because I just gave her Motrin and let her sleep with me.. OH and at that time her fever was back..
July 11th.. no fever but moodiness and fear of the dark was there in full force.. she also was having issues with a dress I wanted her to wear to church.. saying it was bugging her.. So I didn't force the issue just let her pick what she wanted.. once again not sure if that "bugging" her with the dress was her just not wanting to wear the dress or if it was part of the sensory issues stuff from the PANDAS.. The way she was crying and acting about it reminded me of the PANDAS so I thought on Monday I would take her to the doctor..
July 12th. She was perfectly fine.. no PANDAS issues, no fever.. perfectly happy.. slept in her own room.. had a friend spend the night, went to VBS...
So I didn't call the doctor... She still has a nasty cough(which while she was sick her symptoms was fever, couch and stuffy nose) So I guess I wait and see how she is today after VBS(today being the 13th) if she still has a super bad cough I still might call the doctor, just to make sure it is just a cold and nothing strep related...
This is a bit confusing.. if she would have had NO issues PANDAS related at all.. I would not be calling the doctor.. but since there was a day or two with some issues.. and she is still coughing.. It has me wondering about strep..
So that is where we are at the moment..
Monday, July 5, 2010
July 4th and 5th.
Both yesterday and today has been PANDAS days :-(
nothing like it was on Saturday.. But both Sunday and today we have had to use the Motrin... She wasn't having sensory issues.. but has been crying on the drop of a hat, clinging to me.. and feeling sad.. Both days after the Motrin she has been fine.. She cried in my arms for about a half hour today over something little.. We were eating dinner at my moms with a big group of our family.. She went to sit down at the table but my mom needed her to move so my mom could do something This sent Sweet Pea into tear land.. She came running into the bedroom where I was changing Little Man out of his bathing suit.. She sat on the bed and just started crying... That Grandma doesn't love her she wouldn't let her sit at the table but would let everyone but her sit at the table.. There was no reasoning with her... She just jumped into my arms on the bed and cried and cried.. asking to please take her home.. My mom felt bad was trying to explain to her she just needed her to move for a second.. I then had to remind my mom that she was doing this due to the PANDAS so trying to explain anything to her wasn't helping it was just making it worse..
So I just held her till she was feeling better and was back to reasoning for herself.. After that and with the Motrin she did fine the rest of the time there and even wanted to spend the night so that is where she is now..
UGh it kills me to see her like that.. I hate every part of it.. I hate that it is happening to her.. I hate that people who don't fully understand what is going on just thinks she is being a baby or acting up or being a brat or whatever.. I hate that she Hates it.. I hate that after she goes though that and she comes out of it that she is worried about what other people are thinking about her... I hate that I'm sitting here crying about it again..
but I'm very thankful that God is with me and gives me the strength to keep it together and do what I need to do for my little girl when she needs me.. and that I only tend to lose it when I'm alone and thinking about it..
nothing like it was on Saturday.. But both Sunday and today we have had to use the Motrin... She wasn't having sensory issues.. but has been crying on the drop of a hat, clinging to me.. and feeling sad.. Both days after the Motrin she has been fine.. She cried in my arms for about a half hour today over something little.. We were eating dinner at my moms with a big group of our family.. She went to sit down at the table but my mom needed her to move so my mom could do something This sent Sweet Pea into tear land.. She came running into the bedroom where I was changing Little Man out of his bathing suit.. She sat on the bed and just started crying... That Grandma doesn't love her she wouldn't let her sit at the table but would let everyone but her sit at the table.. There was no reasoning with her... She just jumped into my arms on the bed and cried and cried.. asking to please take her home.. My mom felt bad was trying to explain to her she just needed her to move for a second.. I then had to remind my mom that she was doing this due to the PANDAS so trying to explain anything to her wasn't helping it was just making it worse..
So I just held her till she was feeling better and was back to reasoning for herself.. After that and with the Motrin she did fine the rest of the time there and even wanted to spend the night so that is where she is now..
UGh it kills me to see her like that.. I hate every part of it.. I hate that it is happening to her.. I hate that people who don't fully understand what is going on just thinks she is being a baby or acting up or being a brat or whatever.. I hate that she Hates it.. I hate that after she goes though that and she comes out of it that she is worried about what other people are thinking about her... I hate that I'm sitting here crying about it again..
but I'm very thankful that God is with me and gives me the strength to keep it together and do what I need to do for my little girl when she needs me.. and that I only tend to lose it when I'm alone and thinking about it..
Tuesday, June 15, 2010
June 10-14,2010
June 10th was a good day until bedtime.. Sweet Pea started in with the high anxiety stuff, afraid of the dark and night.. a quick dose of Motrin kicked that in the butt.. That and also having a plan.. you see the whole day DH and the two younger kids had been planning a camp out in the back yard in the tent.. But shortly right after dark, Sweet Pea started acting not her self.. pouting sad and then came the fear of seeing it dark out side.. she wanted to stay in the house with me.. and was crying and sad about it.. I knew how excited she had been about this.. and while fear of sleeping in a tent isn't an uncommon thing for kids.. I just had this feeling that hers was a PANDAS thing.. So I grabbed the Motrin quickly.. with in an hour she was happy and wanting to go sleep in the tent.. she said her only fear was what if she had to go to the bathroom in the middle of the night..(which very well might have been her fear, but was made to over react to it by the PANDAS) we got the plan in place.. of DH telling her well if you have to wake me up and I'll walk ya in the house so your not walking in the dark by yourself. That made her feel safe and all was well and they had a great camp out..
Something more about Thursday night.. I was coloring my teenagers hair.. and when I felt her head she felt extremely warm to me.. I said to her you have a fever, she said back.. Yea I know had it for two days but I'm too busy to be sick.. UGH UGH UGH... she never told me she wasn't feeling well, she never complained about being sick, she went on with her normal routine and never mentioned it.. So I put two and two together.. and thought Princess's fever and not feeling well(though not telling me) brought on Sweet Pea's PANDAS symptoms.
Friday June 11
Princess was in the house Sweet Pea in the tent.. Princess and I woke up 1st She was all stuffed up couldn't breath out of her nose and full of sinus junk.. She had just got over(or so we thought) a Sinus infection.. this was like that again.. I looked at her and said.. I know they say this is sinus.. but I would put money on the fact that it is Strep some how..
I said this because of the change Sweet Pea was having..
I had amoxicillin of Princess's(that she didn't finish last time due to them changing her RX to a different a/b) So I started her on that..
I would have loved to run her to the doctor and have some sort of strep test but it wasn't happening.. It was already 10am and she was leaving at 10:30am for a softball tournament..
Sweet Pea when she woke up was having more PANDAS stuff.. crying for no reason, sad for no reason.. moody.. gave her more Motrin and the symptoms didn't seem so bad. She had an eye doctor appointment(no glasses yet she is at 20/25) Then she was leaving to go spend the week at my parents house.. I was worried about her going with the little symptoms she was having.. and me thinking Princess had more then a sinus infection due to the way Sweet Pea was acting.. Anyways..
I told my mom all about what I thought was going on.. and how Sweet Pea was acting she said she would call me if she needed me.
The rest of Friday and all day Saturday my mom gave Sweet Pea Motrin ever 8 hours and Sweet Pea was perfectly fine..
Saturday June 12,
Sunday June 13
and Monday June 14
Sweet Pea has been Symptom free..
Saturday and Sunday Princess was at a softball tournament.. Still fighting the sinus stuff.. taking the amoxicillin and benadryl and starting to feel better.. Monday Princess left for a week at Church summer overnight camp
Sweet Pea while spending the night at my parents with all the other cousins.. I still got to see her and spend time with her to see for myself how she is acting..
Sunday saw her at church and at my brothers for a picnic and she was fine.. happy no symptoms.
Monday my mom brought her home for her softball game and she was my happy little girl.. perfectly fine..
So that is how she has been.
I'm going to post this now.. but then write another post of something I was thinking and found today.
Something more about Thursday night.. I was coloring my teenagers hair.. and when I felt her head she felt extremely warm to me.. I said to her you have a fever, she said back.. Yea I know had it for two days but I'm too busy to be sick.. UGH UGH UGH... she never told me she wasn't feeling well, she never complained about being sick, she went on with her normal routine and never mentioned it.. So I put two and two together.. and thought Princess's fever and not feeling well(though not telling me) brought on Sweet Pea's PANDAS symptoms.
Friday June 11
Princess was in the house Sweet Pea in the tent.. Princess and I woke up 1st She was all stuffed up couldn't breath out of her nose and full of sinus junk.. She had just got over(or so we thought) a Sinus infection.. this was like that again.. I looked at her and said.. I know they say this is sinus.. but I would put money on the fact that it is Strep some how..
I said this because of the change Sweet Pea was having..
I had amoxicillin of Princess's(that she didn't finish last time due to them changing her RX to a different a/b) So I started her on that..
I would have loved to run her to the doctor and have some sort of strep test but it wasn't happening.. It was already 10am and she was leaving at 10:30am for a softball tournament..
Sweet Pea when she woke up was having more PANDAS stuff.. crying for no reason, sad for no reason.. moody.. gave her more Motrin and the symptoms didn't seem so bad. She had an eye doctor appointment(no glasses yet she is at 20/25) Then she was leaving to go spend the week at my parents house.. I was worried about her going with the little symptoms she was having.. and me thinking Princess had more then a sinus infection due to the way Sweet Pea was acting.. Anyways..
I told my mom all about what I thought was going on.. and how Sweet Pea was acting she said she would call me if she needed me.
The rest of Friday and all day Saturday my mom gave Sweet Pea Motrin ever 8 hours and Sweet Pea was perfectly fine..
Saturday June 12,
Sunday June 13
and Monday June 14
Sweet Pea has been Symptom free..
Saturday and Sunday Princess was at a softball tournament.. Still fighting the sinus stuff.. taking the amoxicillin and benadryl and starting to feel better.. Monday Princess left for a week at Church summer overnight camp
Sweet Pea while spending the night at my parents with all the other cousins.. I still got to see her and spend time with her to see for myself how she is acting..
Sunday saw her at church and at my brothers for a picnic and she was fine.. happy no symptoms.
Monday my mom brought her home for her softball game and she was my happy little girl.. perfectly fine..
So that is how she has been.
I'm going to post this now.. but then write another post of something I was thinking and found today.
Thursday, June 10, 2010
June 7, 8, and 9th 2010
Things have been really good on the PANDAS end of things.. I can't get over the change I have seen in Sweet Pea since school ended and she isn't in the class room/school building being exposed to strep daily..
June 7, 8 and 9 all symptom free days.
Monday the 7th she had her 1st softball rec league game and her team won 29-14 with Sweet Pea being part of almost every play where they threw the other team out.. she also had hits every time up at bat and had 3RBIs.. But what was the coolest part of the evening was when they got there uniform shirts and she said to me.."mom this is way to big." When signing her up for the rec softball she was in the middle of the full blown sensory issues that came from the PANDAS.. where even the way too big stuff on her was hurting her and making her cry.. so to hear her complaining about it being "TOO BIG" that was a very good thing..
Tuesday the 8th.. we went to see her counselor and made our game plan up as how they plan to work with her.. She did get her on the list to see a physiatrist only because her doctor asked for it.. But she is low prioritie so I don't know when she will get in there.. but the counselor seems to be helping a great deal with the high anxiety end of the PANDAS.. helping her have game plan in place to help her deal with the anxiety when it hits..
June 7, 8 and 9 all symptom free days.
Monday the 7th she had her 1st softball rec league game and her team won 29-14 with Sweet Pea being part of almost every play where they threw the other team out.. she also had hits every time up at bat and had 3RBIs.. But what was the coolest part of the evening was when they got there uniform shirts and she said to me.."mom this is way to big." When signing her up for the rec softball she was in the middle of the full blown sensory issues that came from the PANDAS.. where even the way too big stuff on her was hurting her and making her cry.. so to hear her complaining about it being "TOO BIG" that was a very good thing..
Tuesday the 8th.. we went to see her counselor and made our game plan up as how they plan to work with her.. She did get her on the list to see a physiatrist only because her doctor asked for it.. But she is low prioritie so I don't know when she will get in there.. but the counselor seems to be helping a great deal with the high anxiety end of the PANDAS.. helping her have game plan in place to help her deal with the anxiety when it hits.. The only issue we had on Tuesday was she started feeling sick a little bad tummy pains and diarrhea, also said her head was spinning.
Wed.. no PANDAS stuff but still had the upset tummy and dizzy stuff going on.. I called the doctor he wasn't in talked with the nurse I was wondering if it was could be from her meds.. they said tummy stuff could be but not the spinning stuff so they think she caught a bug So if she is showing signs on Thursday of being sick we will go into the doctor.. But whatever it is it isn't bringing on any PANDAS stuff.. Which is a good thing..
Wed night DH and Mr Man was camping in the yard.. Sweet Pea wanted to also but she was starting to worry about sleeping outside.. Her fear came from not the night time or being outside.. but about waking up in the middle of the night and needing to go to the bathroom... as part of her plan she came up with on Tuesday .. She came to me and shared with me the fear so that we could put a plan in place so she wouldn't have to feel afraid if she did wake up and have to use the bathroom... This was an easy one.. She didn't' have to walk from the tent to the house alone at night.. she just wakes up daddy and he would walk her in.. and once we told her that all the fear was gone...
I'm going to have to remember this one for when she heads off to summer camp because the bathrooms are NOT in the cabin..
The only other thing PANDAS related is that I'm looking into getting her a 504,(whatever that is,I'm still learning) for the schools.. So they will have to by law help me keep her safe while at school.
I'll share more on that once I learn more about it.. but that is all I have for now.. :-)
Sunday, June 6, 2010
June 3, 4, 5, & 6, 2010
It's been a few days since I posted.. but Thankfully there has been nothing to report. :-) June, 3,4 and 5th were all symptom free days.. So far today June 6th has been also..
She is one tired little girl at the moment but nothing PANDAS related..
On June 3 was there 1st day off school.. that evening Sweet Pea had league softball practice afterwards she asked if 2 of the girls on her team could spend the night.. I said sure.. So T and K and Sweet Pea were at my house from 7pm till 12:45pm the next day.. They stayed up till close to 1am and woke up around 9am.
June 4 at 12:45pm I took T, K and Sweet Pea over to K's house where the girls played all day long and then all spent the night over there
On June 5, at 1pm T was having her birthday party and T, K and Sweet Pea all went to T's house for the party and then all spent the night there..
I picked Sweet Pea up for church this morning and she fell asleep on the way to church.. however after church this morning she went to my grandma's house so that she could have her play date this afternoon with grandma's neighbor..
YES... it does seem my little girl is back to her normal self at least at this point in time...
She is one tired little girl at the moment but nothing PANDAS related..
On June 3 was there 1st day off school.. that evening Sweet Pea had league softball practice afterwards she asked if 2 of the girls on her team could spend the night.. I said sure.. So T and K and Sweet Pea were at my house from 7pm till 12:45pm the next day.. They stayed up till close to 1am and woke up around 9am.
June 4 at 12:45pm I took T, K and Sweet Pea over to K's house where the girls played all day long and then all spent the night over there
On June 5, at 1pm T was having her birthday party and T, K and Sweet Pea all went to T's house for the party and then all spent the night there..
I picked Sweet Pea up for church this morning and she fell asleep on the way to church.. however after church this morning she went to my grandma's house so that she could have her play date this afternoon with grandma's neighbor..
YES... it does seem my little girl is back to her normal self at least at this point in time...
Wednesday, June 2, 2010
June 2, 2010
Today was the kids last day of school for the year... I'm very glad it is done and over with.. This will sort of keep the strep germ at bay.. Or so I hope it does.. she will still be playing on two softball teams, and playing with her friends.. and doing VBS and an over night summer camp.. so she will still have ample opportunity to be exposed :-(
But as much as I want to put her in a bubble I want her to have as much of a normal childhood as she can..
I'm thinking summer should be better then the school year in any case.
Today Sweet Peas had some of the mild maybe PANDAS symptoms..
not before school but later in the evening around 7:30pm she seemed to get that panicked state of mind she gets where she sort of obsesses on something and works herself up about it.. This time I was at my grandmas and I mentioned that I think Sweet Pea will get the teacher for next year that I requested.. Sweet Pea heard me and started to freak out that she wants to be in the same class as her friend Taylor and nothing I said( I asked the principle to put them together but she couldn't grasp that idea) made her calm down about it for a good long while, she was even crying about how she "HAS" to be with Taylor. Then this evening she had that fear of the dark sort of like she was doing last July.. not as bad where she wouldn't leave my side but bad enough that she had me going around closing all the drapes and blinds so she wouldn't see the dark..
I didn't give her the Motrin to see if it was PANDAS or not.. I figured it was close enough to bedtime that I would just give her the antibiotic and see if I could get her to sleep with no major issues.. It is 10:30pm now and she is in the bedroom with her little brother watching cartoons.. (no school in the morning and all)
But she isn't crying, being moody or needing me next to her and she isn't having any clothing sensory issues)
Speaking of the clothing sensory issues.. I don't know what to do. when all this started I thought she was having sensory issues(which in a way she was) I fought with the doctor to give me a script to OT.. and after about 3 weeks he agreed.. but with in a few days we found out it was PANDAS. for the most part all the sensory stuff is gone.. It only came back just a little for the 1st time in a month this past Friday.. Anyways back when I got the script she was placed on the waiting list for an OT evolution they got her set up for that on July 1,2010
I don't know if I need to do that now seeing as I now know she doesn't have a sensory issue per say.. Only when her brain is under attack and ONLY IF those antibodies are hitting THAT part of her brain.. So do I need to keep this appointment or cancel it.. Do I tell them I no longer need it or do I keep it in case the issues come back???
I don't know what to do.. I'm going to ask her doctor but since he wasn't in favor of OT in the 1st place I'm pretty sure he will say she doesn't need it.. Maybe I should ask her counselor also and see what she thinks.
But as much as I want to put her in a bubble I want her to have as much of a normal childhood as she can..
I'm thinking summer should be better then the school year in any case.
Today Sweet Peas had some of the mild maybe PANDAS symptoms..
not before school but later in the evening around 7:30pm she seemed to get that panicked state of mind she gets where she sort of obsesses on something and works herself up about it.. This time I was at my grandmas and I mentioned that I think Sweet Pea will get the teacher for next year that I requested.. Sweet Pea heard me and started to freak out that she wants to be in the same class as her friend Taylor and nothing I said( I asked the principle to put them together but she couldn't grasp that idea) made her calm down about it for a good long while, she was even crying about how she "HAS" to be with Taylor. Then this evening she had that fear of the dark sort of like she was doing last July.. not as bad where she wouldn't leave my side but bad enough that she had me going around closing all the drapes and blinds so she wouldn't see the dark..
I didn't give her the Motrin to see if it was PANDAS or not.. I figured it was close enough to bedtime that I would just give her the antibiotic and see if I could get her to sleep with no major issues.. It is 10:30pm now and she is in the bedroom with her little brother watching cartoons.. (no school in the morning and all)
But she isn't crying, being moody or needing me next to her and she isn't having any clothing sensory issues)
Speaking of the clothing sensory issues.. I don't know what to do. when all this started I thought she was having sensory issues(which in a way she was) I fought with the doctor to give me a script to OT.. and after about 3 weeks he agreed.. but with in a few days we found out it was PANDAS. for the most part all the sensory stuff is gone.. It only came back just a little for the 1st time in a month this past Friday.. Anyways back when I got the script she was placed on the waiting list for an OT evolution they got her set up for that on July 1,2010
I don't know if I need to do that now seeing as I now know she doesn't have a sensory issue per say.. Only when her brain is under attack and ONLY IF those antibodies are hitting THAT part of her brain.. So do I need to keep this appointment or cancel it.. Do I tell them I no longer need it or do I keep it in case the issues come back???
I don't know what to do.. I'm going to ask her doctor but since he wasn't in favor of OT in the 1st place I'm pretty sure he will say she doesn't need it.. Maybe I should ask her counselor also and see what she thinks.
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