Saturday, December 18, 2010

Something i want Sweet Pea to Know

Really it is something I want all my kids to know and remember..

Psalms 139:14a
I will praise thee; for I am fearfully and wonderfully made:

The eternal God, infinite in his wisdom and perfect in his love, personally made you and me. He gave you your body, your mental abilities, and your basic personality because that's the way he wanted you to be—and he loves you and wants to glorify himself through you.

Psalms 72:18
Blessed be the LORD God, the God of Israel, who only doeth wondrous things.

Tuesday, December 14, 2010

Been a few weeks.

It has been a few weeks since I posted last, and I'm happy to report things are getting better.. The PANDAS symptoms are not an every day thing now and when they come it comes only in a mild form of OCD and anxiety and out burst. Nothing too major and nothing that is keeping her from her every day life, friends or school. Bedtimes are no longer bad and neither is getting her up and dressed in the morning.. Normally if we are going to have any issues at all it is right after school in the 1st hour after being home.. which could just be a normal brother and sister thing because it it's all 3 of my younger kids bickering then.. but normally started by Sweet Pea telling everyone to stop talking that the noise is bugging her.. but it's all good, much much better then it was a few weeks ago..

She is still on the 500mg of duricef.. At least until the end of this month when I think the doctor is wanting to lower her dose.

Last week on Dec 7,2010 we had the 1st visit with the child psychiatrist, She listened to everything I had to tell her and also got to talk with Sweet Pea alone.
It was a good day for Sweet Pea a non symptom day.. which was good because it meant that she was willing to go and talk with the doctor. In the end the Psychiatrist agreed that this is PANDAS but also gave her the diagnosis of OCD, She would like to treat with an SSIR Zoloft to which I said no thank you not at this time..
We go back to see her pedi at the end of this month he is not going to be too happy that I turned the Zoloft down again,since he has been pushing for it since Oct..
But I don't think it would help, I feel like it could do more harm then good, and at this point she really doesn't need it..

Every bad flare up of symptoms she has ever had has come on right before we found out she had an infection.. and all her little symptoms I can pin point them to her being around someone who is sick.. I just can't see how Zoloft is going to help that.. If her OCD symptoms were coming outside of her having an infection or being around those who do.. like there was no reason for a PANDAS flare of OCD and yet she was still having alot of OCD I would think strongly about Zoloft I have heard good things about it.. but when antibiotics take he symptoms of PANDAS/OCD away and makes her better.. I don't understand the push for Zoloft except for that is the go to treatment for OCD..

The one thing good that has come out of this though is that the psychiatrist given Sweet Pea's medical history thinks it would be extremely helpful to have immunology testing done on her and see if there is anything going on with her immune system other then PANDAS which leaves her prone to all these viruses and infections. I was to have that testing today at the Akron Children's Hospital but that is a good long drive away from us and we had a big snow storm so it has been pushed back to next week.
I found out that with PANDAS it's the immune system working over time.. that will not show up in the immunology testing.. but they can see if her immune system is low or what not which might explain why she got strep infections, ear infections, Mono, swine flu, viruses and abscesses all the time.. and if we can build up her immune system to stop the infections, that could stop the trigger which produces the antibodies, which attack her brain. So while she is NOT looking forward to this testing.. I'm sort of excited to see if anything is going wrong in there that can be treated.. and yet still hoping nothing is wrong and that all is healthy in there.. it's hard to say which way to pray.. if something is wrong it can be treated, if it's well we are at the same spot we were.. So I"m just praying Gods will be done.

So that is where we are at medical wise at the moment.. But she is doing well for the time being..

Friday, November 19, 2010

Wide eyed but not so bushy tailed.

Dr Kovacevic is one of the leading doctors for PANDAS.. and at his website for his office he has a list of PANDAS & PITAND Syndromes signs and symptoms Click here if you wish to see the whole list. but I have added his #4 here below.

(4) Presence and/or history of certain characteristic physical signs and symptoms. Adventitious movements have been identified in 31% of patients.
Wide pupils (patient appears "terror stricken"; present 83% of patients).
Various and evolving tics (present in 72% of patients).
Deterioration in fine motor skills and handwriting (dysgraphia)(89% of patients).
Short-memory loss (62% of patients).
Enuresis and/or urinary frequency (88% of patients).
Increased sensory responses (increased sensitivity to light, and/or sound, and/or touch, and/or smell) reported in 39% of all patients.
Non-specific gastro-intestinal complaints commonly reported.

I knew when Sweet Pea was going though the worst of this last year that she just looked different.. I couldn't explain to anyone what made her look different. I always said it was her eyes but I wasn't sure why.. I thought it was just sort of like the light that use to be in her eyes were gone..
Then she got her school pictures back from this year and I knew what it was it was the pupil dilation the wide pupil that Dr K mentioned at his website.

Here take a look.

Sweet Pea 1st grade before the onset of PANDAS. I believe the onset of PANDAS was late January early Feb 2009 this was Oct 2008 (but she could have been having milder PANDAS stuff before then that I just didn't know about guess we will never really know)

Sweet Pea 2nd grade in the mist of PANDAS before we knew what it was Oct 2009 I remember this day well she had a melt down before school because at the time she was wearing my teenagers cloths because she was saying everything was too tight and hurting her.. She also was fighting me on baths and washing her hair.. so she and I had a big fight that day about her wearing the shirt i bought her for pictures and also her letting me add some curls to her hair.. I won the battle but now wish I knew what was going on and that I wouldn't have battled with her over it and just would have let her been.

Sweet Pea 3rd grade Oct 2010 we found out about PANDAS and started treatment in May 2010

Now a closer look at her eyes

1st grade

2nd grade

3rd grade.

Look at the difference in the size of her pupils after she started the treatment for PANDAS.. I can go back to all the pictures I took of her last year(and I take Alot of pictures.. I'm a little camera happy LOL) and all of the pictures I have of her look the same with the wide pupils. I shared these pictures with other parents of PANDAS children.. and this is what one of the mothers wrote back to me.

What an amazing album you've created here. When you zoom in on the eyes, well, it is really something, the change in the final picture after treatment has begun. Keep this. I wish there were researchers or doctors we could send this to so that they could understand. Such physiologic change for something that so many docs say is "in their head". HA! A child can not think their pupils into dilation. The medical complexity of PANDAS is mindboggling to me.
Thank you for sharing this,
I plan to keep it in my stuff if you don't mind.


This got me thinking.. Why not send it to some of the doctors.. Don't know if they can do anything with it.. but what can it hurt to send.. So I think I'm going to start with sending this to her pediatrician With a note of Thanks for being willing to call this PANDAS even when he knew he would take alot of slack from it from others in the medical field.. and Thank him for treating her and for giving me my bright eyed little girl back.

Thank you So much Dr Trippe words could not express the gratitude I feel. Thanks Giving is just two days away and you can be sure we will be giving thanks for you along with the other blessings God has given to us.

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..

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..

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.

Saturday, October 30, 2010

Learning to Trust God.

This is being taken right from my email devotions Holiness day by day.
every thing beyond the line is quoted. But the fact that God is in control is what I cling to while going with Sweet Pea though this journey known as PANDAS.
Learning to Trust

Today's Scripture: Psalm 62:8
"Trust in him at all times."
It's difficult to believe God is in control when we're in the midst of heartache or grief. I've struggled with this many times myself. Each time I've had to decide if I would trust him, even when my heart ached. I realized anew that we must learn to trust God one circumstance at a time.

It's not a matter of my feelings but of my will. I never feel like trusting God when adversity strikes, but I can choose to do so anyway. That act of the will must be based on belief, and belief must be based on the truth that God is sovereign. He carries out his own good purposes without ever being thwarted, and nothing is outside of his sovereign will. We must cling to this in the face of adversity and tragedy, if we're to glorify God by trusting him.

I'll say this as gently and compassionately as I know how: our first priority in adversity is to honor and glorify God by trusting him. Gaining relief from our feelings of heartache or disappointment or frustration is a natural desire, and God has promised to give us grace sufficient for our trials and peace for our anxieties (2 Corinthians 12:9; Philippians 4:6-7). But just as God's will is to take precedence over our will ("yet not as I will, but as you will" —Matthew 26:39), so God's honor is to take precedence over our feelings. We honor God by choosing to trust him when we don't understand what he is doing or why he has allowed some adverse circumstance to occur. As we seek God's glory, we may be sure he has purposed our good and that he won't be frustrated in fulfilling that purpose. (Excerpt taken from Trusting God)
The text for this devotional comes from the award-winning NavPress devotional book Holiness Day by Day by Jerry Bridges. For more information or to order a copy, visit the NavPress website.

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
Restrictive eating
Social Anxiety
Age Inappropriate Tantrums
Age Inappropriate Bedtime rituals
Age Inappropriate separation
Mood issues
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.

Sunday, October 17, 2010

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..

Tuesday, September 28, 2010


I almost forgot to mention today... But I went out and got Sweet Pea a probiotic today.

When she started the antibiotic 5 months ago(or how ever long ago May was) her doctor just told me to have her eat alot of yogurt..

Well Sweet Pea is so sick of yogurt I think at this point in time she even hates the word yogurt.. For the last 3 weeks maybe 4 now.. she has just simply refused to eat it..and I know I'm the mother and she has to do what I say, yada yada yada..... PLEASE.. you deal with a child with PANDAS and all the issues that goes along with that and you learn to pick your battles even more wisely then any parent with normal healthy children.. so not to be rude.. but SHUT UP(sorry that is just the mood I'm in LOL)

OK.. back to what I was saying..

Her stomach has been hurting her pretty much every day even before she stopped eating yogurt, so I have been looking around for the right kind of probiotic to give her.. I found 3 that looked good for children online, but never found them at any of the health stores.. I wanted to try one more health store before I ordered online.. Well I did not find the brand i was looking for, but I found Children's chewable(since she can't do pills yet) in two flavors, Cherry and orange. it seem to have all the same stuff in it as the ones I was looking at online So I bought them.. one of each flavor cuz you never know with her what she might like and be willing to take one day and not the other..

What I like about this one as oppose to the one I was thinking of ordering online.. This one you take on an empty stomach, the other you had to take with meals, This one is a chewable the other was a caplet and I would have had to open it and mix it in one of her foods.. and I would have had to do it at lunch time meaning I would have had to get the school to agree with something more, they already act like I'm being a pain in the behind.. that or I would have had to be at the school everyday to give it to her. This she can take anytime before she eats but it has to be at least a 3 hour space between it and her antibiotic..

She takes her morning a/b between 8 and 8:30am(she takes it with food as to help her from having an upset stomach) Her night time dose she gets between 8:30 and 9pm with a bedtime snack. So I'm thinking right after school will be a good time for the probiotic.. she will have an empty stomach and there is enough time space between both doses of A/b.

Ok it's now ten mins past midnight.. I must get myself to bed..

The 504 meeting today.

Today was the 504 meeting with the school.. Yesterday I spent the bigger part of the day.. Changing everything I thought i had ready.. With the help of my sister I was able to get my main points across without being so wordy.. If you have read any of my blogs in the past you know I'm very wordy LOL. It looked so much better after we did that.. I don't have time to type it all out to show you tonight.. but maybe one day..
I also changed the sample letter to go home to parents to read
Dear Parents
This letter is 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 attack their brain causing inflammation. The brain swelling due to a PANDAS attack can cause dramatic behavior changes(a normal child may suddenly become OCD,displays high anxiety, has sensory issues or verbal or motor tics and more)
It is essential for this students well being that you do not send your children to school when they are sick. Because contract with strep can cause harm to this student we ask that you report all cases of strep to the school office immediately.
Your cooperation with this matter is appreciated.

sign the school name here.

See my sister is a much better writer then I.. I blog for my own personal journal of sorts but she can write prettier don't ya thing :-)
Love Ya Sis...

anyways.. I thought the meeting went well and left feeling good about it all..

At the end of the school day I got an email from the school letting me know they are going to need my doctor to sign off on when Sweet Pea needs to be out of school, how many days when strep is in her class and so on..
Well you all read my post about the issues I had at the last doctors visit.. So how in the world am I going to get this???????????????????????
I don't have a clue.. but I'm calling the doctors office tomorrow and requesting a meeting with me and the doctor, I don't need Sweet Pea in there listing she hates when I talk about her and her symptoms and basically everything to do with PANDAS.. she doesn't like being different and she hates that this is happening to her.. So just me and the doctor.. then I guess if I feel like yelling, screaming and crying I can do so.. because I think that is what it might take.. but each visit to the doctor he says something different so who the heck knows.
I'll keep ya all posted....
Why does it have to be so hard to protect your child that is harming them.. UGH... you would think people would want to keep a very bright straight A student, loving little girl safe from her brain being under attack, where it can totally change all those things about her leaving her in a state where sometimes you can't even get though to her, where it's like she isn't even there with you..
I think I'll go cry now and then pray and head to bed..
Please continue to pray for Sweet Pea and the doctor and the school...

Monday, September 27, 2010

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.

Monday, September 20, 2010

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.

Friday, September 10, 2010

blah... that is about all I have to say.

Sweet Pea had her monthly PANDAS appointment with her pedi. Wed night Sept 8th.
Every time (at least for the last 4 months) Every time I leave the
office thinking her doctor is an idiot the problem is and he admits it, he just doesn't know all that much about PANDAS.
I am not just saying this.. but I know more about it then he dose.. and he is
too afraid to learn.. He knows enough about it to treat her with the antibiotics
and he said he now feels safe that she needs to stay on the dosage she is on
for at least a year and we will see where we go from there..

BUT for months he has been telling me that she needs to be pulled out of school
anytime strep is in the building.. but he is telling me I need to make that
happen not him. IOW. he is afraid to put his name on a written paper saying
that. WHY because he is afraid of becoming known as "one of those PANDAS
doctors" So I figured I would get my information on how to handle that from one of the PANDAS doctors online.. grrrrrrrrrr... ticks me off.. because he has been
talking about it for months

He was willing to write me up the paper saying he is treating her for the PANDAS
syndrome and that she will need accommodations from the school in dealing with
this.. but he would not go into details as to what those accommodations should
be... I really wanted his help on this, because how the heck am I to know what is too
much or what is not enough that needs to be done to keep her safe and help her
makes me want to scream.

These are all things he has said to me today.
PANDAS is still very controversial, and I don't know what is true and what is not
with it.
I'm still very sceptical with alot of PANDAS stuff..
I think alot of people are saying there kids with major problems have PANDAS
when there are other major underlining problems..
A Year ago I would have said No I did not believe in PANDAS but Sweet Pea's case
is a clear cut text book case of PANDAS, So now I'm a believer, but I still
think that PANDAS kids have other underlining problems and PANDAS just brings
them to a head and makes them worse.(this is not what most of the research has
shown.. Research has shown that yes there are kids with underlining problem who
get PANDAS and those issues worsen.. but there has been so many study also
showing that perfectly normal children just one day caught strep and out of
nowhere started having a world of problems)

Since he is still sceptical of alot of the PANDAS findings.. He doesn't believe
the Motrin can really help... I can prove him wrong on that one if he lets me..
He told me that when I 1st asked him months ago about what I read about the
Motrin study..
So Anyways today when I was talking to him about all the symptoms Sweet Pea's has
been having over the last two weeks, I also added in like I do to everyone I
talk to that the Motrin lessens if not take the symptoms away (basically pointing
out that while symptoms are never good that it's not totally out of control) He
rolled his eyes and said I still think the Motrin thing works like a placebo
I promise you.. I'm not making this up.. I have seen my child totally out of
sorts with symptoms and with in 30mins to a hour of getting the ibuprofen in her
be totally back to normal... Sure maybe once or twice it could have been a
placebo affect... but every time for the last 4 months the symptoms have gone
away with it's use.. and It's just not my child.. there are 100's and 100's of
PANDAS children using this and it is working to lessen the affect of the
symptoms on them. And you know what at this point in time I don't' even give a
crap if it was a placebo as long as it helps my child not be in pain or act like
she needs to be placed in a padded room.
And so after ticking me off with all that talk.. I asked him about how his
meeting with the doctors at the Children's hospital went.
See last month when he was talking about taking her off the a/b he said that
weekend he was going to a lunch meeting with the children's doctors and he
was going to pick there brain about Sweet Pea's case and how they thought we
should treat her and go about it all.

He looked at me sort of with a worried look on his face. and said Well like I
said, PANDAS isn't easily accepted and I was afraid to bring it up at the
lunch. There is no faster way to start a fight amongst doctor then to start
talking PANDAS, I just didn't know how to bring up that I was treating a PANDAS
case without starting a fight and last year I would have been arguing the
other side of the issue and I don't know enough about it to really support it so
I just didn't talk about it..

I guess I should be glad he is honest enough to tell me that, but I'm still sort
of feeling ticked(as you can tell from my vent here) that I really do not have a
doctor to go to who knows what the heck they are doing.. but as the doctor
pointed out most doctors know nothing about this and they all are learning... I
just don't feel like he is willing to learn all he needs to know to be treating
a case of PANDAS. like he is too chicken to admit it to other doctors that it
is real and he has now seen it with his own eyes..


So in the mean time I have an email out to Dr K. who is a known PANDAS doctor, only like 6 hours away from us. I emailed him Sweet Pea's story and told him her treatment as of now and my issues with her doctor(though not in a venting form like this.. I was nice LOL) and I'm hoping to hear a response from him. I have been told by other parents of PANDAS children that he is the best and that he will respond.. So now I wait and see. I just asked him what he thought I should be doing, if there was anything he thinks needs to be done that wasn't, just basically asking his opinion on Sweet Pea's case.
Anyways that is where we are with that.

She is still having symptoms everyday not just one symptom over and over.. but different symptoms at different times just out of the blue and random. But she is not in any major pain from it so that is a good thing, but symptoms are always a bad thing no matter what symptom it is or how mild it is.. :-(

Saturday, September 4, 2010

More on the 504

The school hasn't called me yet to set up the meeting to get Sweet Pea a 504 in place. That bugs me that they are not in any hurry.. but it has given me time to get all the information in place that I need to have for the 504. I have been hitting website after website looking for the best that will explain PANDAS to the school and all who will be at this meeting.. I'll be sharing that information from the website here in later posting.
The other big important thing I needed to come up with was what to ask for that Sweet Pea needs written into her 504.

Here is the list of what I have come up with so far.

1) A note sent home to all parents alerting them to the fact that there is a child in the building with an auto immune disorder, briefly explaining PANDAS and asking them to not send their child to school sick and if their child has step to report it to the school quickly.

2) The School will call to notify me as soon as any child and or teacher, aide, staff member in the school has strep.

3) The school will call me as soon as any child, teacher, or aid in Sweet Pea's class goes home sick with possible signs of strep(coughing ,or sore throat, vomiting and or fever)

4) Sweet Pea will be out of school whenever there is any strep in the building and /or when a child/teacher has gone home sick in her classroom
(how long she will need to be out will depend upon her doctor.... I'm still waiting word from him as what his recommendations are as to how long after strep is in the building does she need to be away from the building)

5) When Sweet Pea is unable to attend school she will be given all her books, her homework, classroom work and assignments and I will be given a list of pages numbers or whatever to what the teachers are teaching so that I can teach Sweet Pea at home.

6) When Sweet Pea is unable to attend school she will be able to do all her test and quizzes at home monitored by me so that she will be able to stay caught up and on track with her classmates.

7) Sweet Pea's teachers will write a note, email me, call me with anything they feel I need to know in order that Sweet Pea is learning the same thing ins the same way as her classmates, and I will call and email them with any questions or things I don't understand. Open lines of communication.

8) A tutor will be given to Sweet Pea if she is falling way behind and or her grades are dropping

9)Extra time to turn in assignments test, quizzes, projects if the PANDAS symptoms are causing Sweet Pea not to be able to do her work

10) hand sanitizer at her desk to be used often and after recess, gym, art, music.

11) Disinfecting wipes to be used by Sweet Pea to wipe her desk top and chair when changing classes between her two teachers.

12) Sweet Pea will be able to keep bottles of water to drink from instead of drinking from the water fountain and may take a bottle with her to gym class for when the other kids get a drink from the fountain.

13) Sweet Pea takes a daily antibiotic to fight off the strep that might enter her body and she uses a lot of ibuprofen to help with the inflammation of her brain to keep down the symptoms. Due to this her stomach gets upset easily. This often has her throwing up or ending up in the bathroom. Sweet Pea will be able to keep a box of crackers or pretzels in her class that she can eat if her stomach is upset and hopefully that can ward off any nastiness and allow her to continue on throughout her day.

14) IF symptoms happen in school:
If it is the sensory symptoms or milder symptoms of depression, anxiety, sadness, Sweet Pea will know they are happening, For sadness, fears and being mad her coping strategies is to distract herself from it , her normal every day school work and learning are often enough to get her through the school day.
If the symptoms is sensory it will often cause her to be in pain. When she knows the symptoms are happening and they are bugging her , She will be able to tell the teacher and be given a dose of Ibuprofen. If after 30 mins to an hour the ibuprofen doesn't help a phone call to me should be made.
If her brain is under attack to the point she doesn't know the symptoms are happening you will see a big change in her personality. Either she will be crying for no reason and won't be able to explain why or will answer "I don't know" when you ask what is wrong. or she just won't respond at all. She could also be throwing a fit that you won't be able to get her to stop. She could also be scared out of her mind over nothing that really is going to hurt her but there will be no explaining to her that her fears are unfounded, or that things are not hurting her. Because in her brain and mind at that time this is her reality. At those times I should be called immediately and I will come get her.
These bigger symptoms normally only happen if she herself is sick so the key here is limiting her exposure with all I have mentioned before.
Also those smaller symptoms can become larger ones if the swelling in her brain is not taken care of with the Ibuprofen.

That is the list of stuff I'm asking for.

What do you all think???

In my next post I'll give a sample letter of what I think the note should say that goes home with the parents.
but for now I need to let the husband on the computer :-)

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..
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

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

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.

Tuesday, August 24, 2010

1st day in the 3rd grade

Sweet Pea had a good 1st day of school.. She got up got dressed, ate breakfast, took her antibiotic, then I gave her some Motrin and off to school she went..
She seemed fine after school and she spent 3 hours with me at Princess's High School volleyball game... When we got home she ate dinner, but with in an hour she seemed very whiny and moody.. So before putting her to bed I gave her another shot of Motrin..
I think this 1st week I'm going to continue the Motrin in the morning and evening.. Then the 2nd week take it away and see how she does..

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.
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
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, August 11, 2010

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..