need to make note of this.

Back in May 2010 I wrote this post in it I mentioned this rash Sweet Pea seems to break out with when her cloths were hurting(symptoms flaring) here, even before I knew of PANDAS..
Well since then I have notice that on her bad symptom days that rash seems to always be there...
I have pointed it out to her doctor a few times who tells me it's nothing..
BUT I really REALLY think there is something to this rash, sort of reminds me of a lesser version of a scarlet fever rash.. I just don't know how to get her doctor to listen to me on this..
Last night Sweet Pea came to me and said "mommy that rash is back on my legs" and sure enough it was.. Right back in the same spot it always is when she is having her symptom.. he doctor called it eczema last time I showed it to him(I don't think it looks like any pictures I have ever seen of eczema it looks like a scarlet fever rash to me just alot lighter in color)

This picture here is a picture of a scarlet fever rash I took off google.

These next two picture are of the rash Sweet Pea gets. These pictures were taken in May, but the rash she had lastnight looks the same as these picture.. but I found it doesn't show up as well in pictures as it does looking at it with just your eyes but you can still sort of see it here. I don't' get it.... Why does she only have it when her symptoms are flared up???
It was on her thighs, her back and a little on her belly again last night.. the same places I have seen them EVERY TIME she is having lot symptoms over the last two year.. I wish there was someone I could give this information to who would know what to do with it. Not that the rash is hurting her, sometimes it itches but doesn't really hurt her... but what is the connection with this rash and her symptoms?????
I don't have a clue what this means.. but I wanted to make note of it anyways..

The Right Thing or Not????

On Tuesday Jan 18,2011 Sweet Pea went back to the Children's Hospital to the immunologist for the results of the immune testing.
I had totally had it in my mind that they were not going to find anything, after talking with alot of PANDAS parents most of the kids did not have any immune issues, just the auto immune response of PANDAS. And they sort of thought of PANDAS as an over active immune system not a immune deficiency. So I had prepared myself to hear that all was well with Sweet Pea.

ONLY that is NOT what they told me.. they said while most of her test came back normal that there was a problem with her IgG. The S Pneumo IgG antibodies numbers were all wrong.. I don't fully understand what all that means..
but the 1st thing they wanted to do to treat it was to give her a booster immune shot of Pneumoccal Polysaccharide(PPSV). The part that raised the big red flag for me was the S part of all of this.. S= Strep.
I questioned the doctor if this was the right thing to do, seeing how she has PANDAS and it's strep antibodies that attack her brain.
She told me that She said Dysregulation of the immune system can result in autoimmune responses(which PANDAS is) Her hopes are that they introduce her body to this again and it kicks her immune system in gear and that her body will start remembering and creating the right sort of antibodies to fight the right thing. This booster shot is the 1st step.

I went ahead an let them give it to her, even though i am still questioning myself on if it was the right thing to do.. seeing how they were putting strep into her body.. UGH UGH UGH..
She was already having milder symptoms from when we all had the strep throats in the house.. and now she has a live virus running though her... Her symptom are ramped up at the moment.. We are doing alot of Motrin to keep the inflammation down and that helps a bit.. but the symptoms are in a flare right now.
Also it doesn't help that we have just lowered her antibiotic back to a prophylactic state. of 250 mg twice a day over the 500 mg twice a day.

Anyways we will have another lab done after Feb 15,2010 to see if her body is remembering the antibodies and if she can create the right ones.
If she does I do not know what that means as far as the PANDAS goes.. but as far as her immune system goes it means that they will then just keep an eye on it to make sure it keeps working correctly ... and if it does it should mean she stop catching everything under the sun.
Basically the IgG are one of main antibodies in the immune system. I'm just going to explain it as I understand it..
Once your body has been exposed to something the body builds antibodies to fight the infection, virus, whatever.. the IgA antibodies fight off the infection once you get sick, but the IgG antibodies are made and are to remember what it was they were made to fight against, So that when you are exposed a 2nd time to it as soon as they see that virus,bacteria whatever in your system they are sent out to kill it quickly before you become sick and also trigger the right sort of antibodies to be made to kill off whatever it was you have been exposed to.
In Sweet Pea's case, the IgG's are messed up, and are not creating the antibodies , which in return her body doesn't remember she has had this or that infection before so she keeps getting sick with the same thing over and over again, which explains all the time she gets strep, ear infections and flu's and viruses and pretty much anything under the sun because the S Pneumo IgG antibodies are to fight off like 23 or 28(i don't remember) or so different types of bacteria including those most likely to cause serious disease.

So like i was saying I don't know what it means if her body starts to respond correctly with this booster shot. I think they just watch her and maybe give her a booster every 5 years.. and I'm not 100% sure if this will help with the PANDAS autoimmune disorder or not.. but in my mind it makes sense that if the immune system starts working correctly that there is a good chance that the mix up with the antibodies fighting the wrong things will stop also (but no one has come right out and said that)..

On the other hand.....
If this shot does not fix the IgG problem and when they do the test again if the test still shows that her body isn't doing what it should, Then they will label Sweet Pea as having an immune deficiency which most people would NOT want... but I don't know which way to hope this goes...
Because treatment for immune deficiency is IVIG(click HERE if you would like to know what IVIG is)
IVIG is also one of the best treatment for PANDAS... ONLY for PANDAS it is not covered by insurance because they consider it experimental. IVIG itself is extremely expensive. I have not looked into IVIG with Sweet Pea yet because there are other treatments that have worked and I sort of took the approach of start with the less invasive and if it doesn't work work up to the big guns.. Though there are some doctors out there who are PANDAS experts that don't bother messing with antibiotic or steroid treatments and goes right to IVIG.. I have emailed both kinds of PANDAS doctors. Dr T. in NJ starts small and works his way up. Dr K in IL goes right to IVIG.
In any case.. if they label Sweet Pea as being immune deficiency she will be able to get the IVIG all covered by insurance for the immune deficiency and it will treat the PANDAS as well. Everyone I have spoken with who has gone the route of IVIG has had success with it. some of them needed two rounds of IVIG but the PANDAS is gone.

So I ask you all to Pray God's will in this matter... be it that her immune system kicks in and turns the auto immune response of PANDAS around so it stops happening and she can go back to her normal self with the added benefit of not getting sick so often, Or That she labeled with having an immune deficiency and that the treatment for it will also be what heals her from the PANDAS.

update on all the sickies.

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.

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.

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..

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..

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.

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.

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.

So much going on.

There has been so much going on PANDAS wise over the last two weeks that I don't even know where to begin..
I'm just going to do a very quick not very interesting update there just so I don't forget stuff.. I'll go into more details when I have more time.

Oct 2,2010 Very bad PANDAS day crying for 5 hours.
Oct 3,2010 better but not good PANDAS day.
Oct 4,2010 meeting with her pedi to talk about PANDAS stuff
Oct 6,2010 emailed and talked on the phone with a PANDAS doctor in NJ.
Oct 7,2010 back with another meeting with her pedi. Also blood work done
Oct 11,2010 another doctor appt with the pedi. who is getting her set up with a doc at the Akron Children's hospital.
Oct 15 Akron Children's call to set up the appt for Dec 7,2010

I was to have a phone call with the PANDAS doc in NJ on the 18th but cancelled it for now.. I think I'll call and set up a new time soon.

In the mean time.. 10/2/10 was the last bad bad day we have had in the last two weeks.. most days have been very mild PANDAS stuff moodiness, and crying.. but no major stuff.

Sorry so dry here, but I needed to document this so I didn't forget.. I just haven't found time to write out the whole long sad story..

More symptom days and the 504

Sweet Pea had a rough week last week.. My last post was last Monday telling you about her symptom day she had.. She made it to school Tuesday but when she came home she was a mess with one symptom after another.. DH and I agreed something had to be going around the school and she needed to be out of class. So I called off work on Wed and stayed home with her, she pretty much had symptoms all day and slept alot also.. I think she would have been sick sick like fever and everything if it wouldn't have been for her being on and antibiotic already working to fight off whatever it was because she just didn't feel well. Thursday she went to school and Friday she went to school with the help of Motrin keeping symptoms under control..
Friday night she seemed ok and Saturday she played in her soccer game at 9am but by 10am The symptoms were back.. she was yelling at me and crying her eyes out.. and sad, and all of that..
she ate lunch and I gave her more Motrin and she slept the rest of the afternoon.
Sunday she seemed perfect and I didn't have to give her Motrin.
This morning she was a little moody but I passed on the Motrin, I'm trying not to give her as much.. Her poor little tummy is starting to hurt her all the time.. Taking the antibiotics twice a day and the Motrin is doing nothing to help with that..
I am however getting her probiotics to take to sort of counter act the antibiotics that are killing off the good bacteria as well as the bad.. Hopefully that will help her tummy feel better..

In other news the 504 meeting is set.. Tomorrow morning at 8:15 I will go into the school to meet with everyone to give them all the information I have about PANDAS to help them understand, give them the doctors paper stating that Sweet Pea is suffering with this.. and give them the list of things I'm asking them to do for her which I posted here three post ago..

In that post I mentioned I would would post a copy of the letter which I would like to go home with all the students at the school.. I'll type that out at the bottom of this post..
So that is what is going on PANDAS wise at the moment.. over on my other blog I did write a weekend recap for those of you interested in knowing what is going on in other aspects of my life.. :-) you can read that here.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~``
Sample letter of what i would like to see go home with every student at Sweet Pea's school..

Dear Parents
I wanted to inform you of a child in our school that has an auto immune disorder known as PANDAS(Pediatric Autoimmune Neuropsychiatric Disorder Assoc. with Strep) when a child with PANDAS contracts strep or comes in contact with strep antibodies that are aimed to kill the strep turns on the child and begins to atttack their brain causing inflammation. This swelling causes dramatic behavior changes. A once "normal" child suddenly has OCD, tic, high anxiety, sensory issues and more.
If at all possible we ask that you please do not send your children to school when they are sick. We also ask that if your child has strep even if it is being treated, that you call the school as soon as you find out. We thank you for your help in this matter.

sign the school name here.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I'll find out soon if the school is going to be willing to work with me on this so we can keep Sweet Pea as safe as we can..
Now I know not every parent will listen to this or for that matter even read it.. but the more people informed the better chance I have of keeping my little girl safe.

Really bad morning

Sweet Pea had a really bad morning today. She woke up got dressed which was a battle in and of itself. She couldn't' t find anything that felt right on her :-(

that should have been my clue that this was going to be a PANDAS day .

But after going though all her dresses I told her I don't care what you wear just put on whatever feels right.. a skirt and shirt I bought her last spring in the heat of all this PANDAS stuff is what she picked.. She looked pretty, but I knew that was her go to outfit when things were bugging her sensory wise.

So she is up, she is dressed, she ate her breakfast, I want to brush her hair and leave for school.. I was working today and was needing to drop them off at school and get to the school I was working at.. Only I couldn't find her she was off sitting in a room alone with a blanket over her head crying her eyes out... I couldn't get her to stop and tell me what was wrong... she just kept crying and crying..

I tried to get her up and moving for school.. but it wasn't happening.. She was just having a PANDAS morning.. I don't know if the hiding and crying was anxiety, mood sort of stuff, or if she just was hurting and not feeling right from sensory stuff...

I didn't know what to do.. I knew I wasn't sending her to school like this... but I had to get to the school myself working in the spec need class where there are not many subs who can cover that... So I couldn't call off..

So I called my grandma who lives 5 mins away.. asked if Sweet Pea could come stay with them...

She cried the whole way to grandmas but was happy to be going over there.. She hid under the blanket the whole way there also..

Once at grandmas I guess she took a 3 hour nap.

I went to check on her during my lunch and she was up no longer crying.. She still looked extremely sad, no smiles, no happy chatter box like she normally is.. but she said she wanted to go to school.. So I took her in a 1/2 day.

She is still not her self at all, but she is holding it together..



I didn't give her Motrin today because her tummy is hurting her really bad as it is.. I need to go get those probiotics soon and get them in her and try to help her not get sick from that antibiotics killing off the good stuff that keeps her tummy well. :-(



Just not a good day for Sweet Pea.

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.

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.

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..

It has been along time

It has been awhile since i had a moment to come over and update Sweet Pea's blog(or any of my blogs for that matter)
Over the past few weeks we have had our ups and downs.. nothing too major though.
The last week in July Sweet Pea went away to overnight church summer camp for a week.. I was worried out of my mind about so many different things, all PANDAS related.. I remember when my oldest Princess went away from camp for the 1st time I was so worried about her.. if she will make friends, if she will get home sick.. will she know how to wash her hair and get all the soap out.. all those normal things..
This time around not one bit of those worries came into play.. My worries were if she was sad, pouting and crying.. would the adults there just think she was homesick or would they understand it was her PANDAS and give her the Motrin so she wouldn't be spending her day sad and crying.
If she got moody and snapping at people will they be able to tell that was PANDAS give her Motrin or would they think she is just being a spoiled or bratty kid.
Then what if she had the anxiety come on strong and was totally scared of whatever it is making her fearful will they understand reasoning with her isn't going to help she needs Motrin and you just have to comfort her till the fear is gone not blow it off and say it's silly. So many things went though my mind..
The biggest worry was her coming in contact with strep and having all the major symptoms come back and me not there with her..
So I prayed left it in God hand and sent a note to her councillor and the camp nurse explaining PANDAS and what Sweet Peas symptoms can present like sent her antibiotic and also a bottle of Motrin and sent my baby girl off to camp.
She had a blast... she did everything there was to do even learned to water ski.
The Adults in charge of her told me she had a great week no issues and they didn't give her Motrin at all..
ONLY when she got off the ferry boat the last day of camp.. I could see it in her eyes and face that she was having issues.. She was masking it really good(she has been working in therapy on how to deal with her symptoms if she is a where they are happening) One of her ways of dealing with her fears and anxieties is to play things she likes that make her happy..So I think Sweet Pea threw herself into all the fun activities at camp to help herself deal... I'm very Proud of her for that.. but also sort of wish she would have been able to have someone give her Motrin to take the swelling down in her brain so that she would have been able to enjoy herself more without having to deal with it..
But she did have a blast and can't wait till next year to go back..

The day after she got home she had a two hour crying spell for no reason at all.. the 1st hour I was marking it up at just lack of sleep.. but after that hour I gave her Motrin and with in an hour she was perfectly happy no more crying or clinginess..
She had symptom like that for a week after camp..

Since then she has been mostly fine with a break though symptoms here or there but nothing too noticeable.

In other news
yesterday was her last day with the therapist.. She thinks Sweet Pea is doing wonderful.. she thinks there is no long lasting effect from the trauma that she went though with the illness before we figured out what it was that was hurting her and messing her up so badly.. She thinks Sweet Pea knows what to do to keep herself as safe as she can be and that she has coping stuff in place to handle the smaller symptoms if she knows what it is she is feeling.. So unless something new arises we don't have to make any more trips for that.

I'm still working at getting a 504 for Sweet Pea.. I wanted to have it in place before school started.. I don't think that is going to happen I cant seem to get anyone to call me or email me back so I can get the ball rolling on this.. grrrrrr. So I might have to wait till someone is at the school to talk face to face..

So that is the updates School starts the 24th of this month.. Please be praying that Sweet pea can attend school without getting sick..

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.

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..

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..

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..