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.

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