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..

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.

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.

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.

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.

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.

Probiotics..

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..
~sigh~
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...

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.


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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 :-)

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 4th and 5th.

Both yesterday and today has been PANDAS days :-(
nothing like it was on Saturday.. But both Sunday and today we have had to use the Motrin... She wasn't having sensory issues.. but has been crying on the drop of a hat, clinging to me.. and feeling sad.. Both days after the Motrin she has been fine.. She cried in my arms for about a half hour today over something little.. We were eating dinner at my moms with a big group of our family.. She went to sit down at the table but my mom needed her to move so my mom could do something This sent Sweet Pea into tear land.. She came running into the bedroom where I was changing Little Man out of his bathing suit.. She sat on the bed and just started crying... That Grandma doesn't love her she wouldn't let her sit at the table but would let everyone but her sit at the table.. There was no reasoning with her... She just jumped into my arms on the bed and cried and cried.. asking to please take her home.. My mom felt bad was trying to explain to her she just needed her to move for a second.. I then had to remind my mom that she was doing this due to the PANDAS so trying to explain anything to her wasn't helping it was just making it worse..
So I just held her till she was feeling better and was back to reasoning for herself.. After that and with the Motrin she did fine the rest of the time there and even wanted to spend the night so that is where she is now..

UGh it kills me to see her like that.. I hate every part of it.. I hate that it is happening to her.. I hate that people who don't fully understand what is going on just thinks she is being a baby or acting up or being a brat or whatever.. I hate that she Hates it.. I hate that after she goes though that and she comes out of it that she is worried about what other people are thinking about her... I hate that I'm sitting here crying about it again..
but I'm very thankful that God is with me and gives me the strength to keep it together and do what I need to do for my little girl when she needs me.. and that I only tend to lose it when I'm alone and thinking about it..

Sinus infections caused by strep??

in my last post I mentioned how my oldest Princess had a sinus infection about two weeks ago.. when they told me sinus infection not strep I was happy.. Then how on Friday she had all the symptoms of the sinus infection back.. ONLY while she had that, Sweet Pea had PANDAS stuff going around.. and as far as I can tell and see.. The only sick person Sweet Pea came in contact with was her older sister.. Now that Sweet Pea hasn't been around Princess in 5 days Sweet Pea is back to normal..

I would have put money on the fact that the Sinus infection was somehow strep related.. due to Sweet Pea's reaction..

Today I learned about something called strepococcus pneumoniae here is what it is.

Streptococcus pneumoniae (S. pneumoniae or "pneumococcus") is a bacterium commonly found in the nasopharynx (back of the nose) of healthy people. More than 90 serotypes of S. pneumoniae have been identified. Serotypes of pneumococcus are identified on the basis of differences in the polysaccharide (sugar) capsule of the organism. The presence of pneumococcus in the nasopharynx is referred to as "carriage". Most people have been carriers of S. pneumoniae at some point in their lives. Pneumococcal carriage is more common in young children, is usually transient and generally causes no illness. S. pneumoniae is an exclusively human pathogen and is spread from person-to-person by respiratory droplets, meaning that transmission generally occurs during coughing or sneezing to others within 6 feet of the carrier. Thus, carriers of S. pneumoniae, while generally healthy, are an important source of infection and disease for others.
Occasionally, S. pneumoniae will spread from the nasopharynx of a colonized person into other parts of the body and cause diseases, including otitis media (ear infections), sinusitis (sinus infections) and pneumonia (lung infections). In addition, S. pneumoniae can sometimes get into places in the body that are normally sterile (free of bacteria) including the blood, causing bacteremia, or the lining of the brain and spinal cord, causing meningitis. When pneumococci get into these sterile places in the body, it is called "invasive" pneumococcal disease. A relatively small number of serotypes of S. pneumoniae account for most invasive disease. Invasive pneumococcal infections can result in serious complications or death.


So when I was thinking Princess's sinus infection had to have something to do with strep that would trigger Sweet pea's body to build up antibodies which in return attacked her brain causing inflammation in the brain which brings on the PANDAS symptoms.... I think I was on to something there...

Now to figure out what to do about it.. ~sigh~
not only do I have to watch having her around people with sore throats which might be strep throat, I also have to worry about people with stuffy, runny noses and ear infections...
HOW IN THE WORLD do i keep my little girl safe?????????????????

June 2, 2010

Today was the kids last day of school for the year... I'm very glad it is done and over with.. This will sort of keep the strep germ at bay.. Or so I hope it does.. she will still be playing on two softball teams, and playing with her friends.. and doing VBS and an over night summer camp.. so she will still have ample opportunity to be exposed :-(
But as much as I want to put her in a bubble I want her to have as much of a normal childhood as she can..
I'm thinking summer should be better then the school year in any case.
Today Sweet Peas had some of the mild maybe PANDAS symptoms..
not before school but later in the evening around 7:30pm she seemed to get that panicked state of mind she gets where she sort of obsesses on something and works herself up about it.. This time I was at my grandmas and I mentioned that I think Sweet Pea will get the teacher for next year that I requested.. Sweet Pea heard me and started to freak out that she wants to be in the same class as her friend Taylor and nothing I said( I asked the principle to put them together but she couldn't grasp that idea) made her calm down about it for a good long while, she was even crying about how she "HAS" to be with Taylor. Then this evening she had that fear of the dark sort of like she was doing last July.. not as bad where she wouldn't leave my side but bad enough that she had me going around closing all the drapes and blinds so she wouldn't see the dark..
I didn't give her the Motrin to see if it was PANDAS or not.. I figured it was close enough to bedtime that I would just give her the antibiotic and see if I could get her to sleep with no major issues.. It is 10:30pm now and she is in the bedroom with her little brother watching cartoons.. (no school in the morning and all)
But she isn't crying, being moody or needing me next to her and she isn't having any clothing sensory issues)

Speaking of the clothing sensory issues.. I don't know what to do. when all this started I thought she was having sensory issues(which in a way she was) I fought with the doctor to give me a script to OT.. and after about 3 weeks he agreed.. but with in a few days we found out it was PANDAS. for the most part all the sensory stuff is gone.. It only came back just a little for the 1st time in a month this past Friday.. Anyways back when I got the script she was placed on the waiting list for an OT evolution they got her set up for that on July 1,2010
I don't know if I need to do that now seeing as I now know she doesn't have a sensory issue per say.. Only when her brain is under attack and ONLY IF those antibodies are hitting THAT part of her brain.. So do I need to keep this appointment or cancel it.. Do I tell them I no longer need it or do I keep it in case the issues come back???
I don't know what to do.. I'm going to ask her doctor but since he wasn't in favor of OT in the 1st place I'm pretty sure he will say she doesn't need it.. Maybe I should ask her counselor also and see what she thinks.

Seems like an endless stream of tears..

My tears not Sweet Pea's.. though she has had a few of her own this morning.
Sweet Pea had a hard morning. She woke up all sort of jumpy like she had to just rush rush rush.. I didn't really understand that need because we woke up at normal time.. she hurried down her breakfast.. took her A/B got dressed quickly(which is a good thing, meaning there was nothing hurting her clothing wise this morning).. she brushed her hair and teeth.. grabbed her bag and was ready to go.. All while the rest of us was still in slow motion in our PJ's and eating breakfast.. She just couldn't sit still she would sit get up walk, sit get up walk, sit get up walk.. all the while getting more I don't know what word to use.. worked up, up set, Panicky that we were going to be late to school.. kept barking orders Hurry up.. Get moving, do you need to do that now, Leave that just get your shoes on..
I tried to tell her we are all Ok we have plenty of time.. but she didn't seem to grasp that concept.
It was 15 minutes before we had to leave when she started yelling rudely at us.. You always make me late, I can't handle this.. we have to go right now...
At that point Mr Man said to her "Chill Sweet Pea" she just sort of shut down.. her face dropped she looked so sad, it wasn't a loud cry but tears started falling from her eyes..
It was then I figured I would try the Ibuprofen thing and see if that helps her.. I just put my arm around her walked her to the kitchen gave her the Motrin. she still had tears dripping down her face though she was looking down because she didn't' want me to see them. I said honey are you sad, she shook her head yes, I said what are you sad about she wouldn't talk, she had her head down hair all over her face she just wrapped her arms around me and started crying more..
we moved to the couch and I just held her in my arms until it was time to go.. we were walking to the van to go to school and she had one lone tear drip out of her eye and down her cheek.
I kept it together with her around.. and while dropping her off at school.. but as soon as she was out of view.. I started crying and I can't seem to stop. My heart is just hurting so bad right now.
My poor baby girl is scared, worried, sad and at times in pain.. and she doesn't know why, which scares her more and makes her more worried, and makes her even sadder. I hate this.. I hate every tiny part of this..

Just a few more things on my mind tonight.

With Sweet Pea showing some of the symptoms again.. and her exposer to Strep again.. This means there are antibodies attacking some part of her brain again and I don't know how big a part, and if it will do damage, and if it does, how much and will it heal itself or will it be permanent.
All of this scares me to death.....
..........
I had to stop right there while I was typing this.. I had to grab my Bible study journal. God just spoke to my heart as I started to say how scared I was.. what ran though my heart is "Do not be afraid" and this overwhelming urge to flip though my Journals what jumped out at me was the journal I wrote a few weeks ago on I Peter 1:13
The NIV reads like this "Therefore, prepare your minds for action; be self-controlled; set your hope fully on the grace to be given you when Jesus Christ is revealed."
But I used my KJV Bible this day and it reads like this.
"Wherefore gird up the loins of your mind, be sober, and hope to the end for the grace that is to be brought unto you at the revelation of Jesus Christ;"

Here is what I wrote that day that God just laid on my heart to read while in the middle of writing this post..
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I Love That Phase "Hope To the end"
I mean just reading that part of the verse reminding me of that Blessed Hope , Gives me Hope.
When everything around you is caving in everything is going wrong, when everything seems over whelming.. We can hope to the end..
Not just till the end of the trials, But till the Lord returns or calls us home..
Because no matter what... NO MATTER WHAT!!!!!
One day this will all be over , we will be with the Lord.. and all of this will be for His Glory and we will say Thank You Lord.
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This also brings to mind. I Peter 1:7 That the trial of your faith, being much more precious than of gold that perisheth, though it be tried with fire, might be found unto praise and honour and glory at the appearing of Jesus Christ:

WOW!!!!!!!!!!!! Isn't God Good...
I totally started this post just about at the point of wanting to cry and freak out myself.. scared out of my mind about what is going on with my baby girl.. and worried about her Brain.. and God tells me to STOP... He leads me to verses that will comfort me.. turning my eyes back on Him.. reminding me that I have a heavenly father who is in control of all things.. nothing happens that He does not permit. I might not understand it.. and I might hate every minute of watching my little girl go though this.. but I can trust that God will work this together for His good for His glory.. and I just need to surrender this unto Him.. and in Him I can rest.