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 :-)