does anyone have 504's for there children?

[ma2ar2rm2]

About a month ago we found out that our dd8 has PANDAS. this last month of school Strep has been running rapid thoughout here school K-4..

The school looks at me like I have 2 heads when I pulled my dd out of school one afternoon because there was kids with strep in her class room.. and I asked them to have her class room scrubbed that night so that dd could come back to school the next day.

 

I was telling this to dd's counselor(who is working with her to help with the anixity which came with the PANDAS) The Counselor mentioned that she thought it would be a good idea for me to get dd a 504 though the school so that she would be listed as having a need where I need to know if strep is in the school and in the class. And that her class room will need to be cleaned more then what they normally do and so on.. or that it doesn't count agaist her if I need to pull her out of school to protect her for a day or so to keep her from getting exposed more to strep.

 

She said 504's normally are for disabilities but it also covers medical condictions and she feels PANDAS would be covered in it..

 

I was just wondering if any of your children had 504's because of there PANDAS??

If so how do you go about getting one? and if not how do you handle there schools? What do you tell there teachers?? how do you keep them safe while at school??

[tantrums]

I just had the eligibility meeting a few days ago. What I did was request a child study team eval for special education services. They did the whole evaluation. I was somewhat surprised, and honestly, impressed. He did not qualify for special education, but the school was more than willing to do a 504 based solely on PANDAS. No argument, no debate over the diagnoses. We have the meeting to formalize the plan in August before he starts 2nd grade.

 

Glad you posted bc I hadn't thought about asking to have the room cleaned more often.

 

They are going to train all of the teachers who will work with him in PANDAS/Tourettes. He will also be allowed to test at his own pace and leave the room if necessary. Since he was also recently diagnosed and we are fine tuning the treatment currently, we are going to reassess in August.

[ma2ar2rm2]

I just had the eligibility meeting a few days ago. What I did was request a child study team eval for special education services. They did the whole evaluation. I was somewhat surprised, and honestly, impressed. He did not qualify for special education, but the school was more than willing to do a 504 based solely on PANDAS. No argument, no debate over the diagnoses. We have the meeting to formalize the plan in August before he starts 2nd grade.

 

Glad you posted bc I hadn't thought about asking to have the room cleaned more often.

 

They are going to train all of the teachers who will work with him in PANDAS/Tourettes. He will also be allowed to test at his own pace and leave the room if necessary. Since he was also recently diagnosed and we are fine tuning the treatment currently, we are going to reassess in August.

 

That is so good to know that they were willing to work with you on this.. this gives me hope.. So when you reuest a child studyteam eval.. did you do that at the school or did you go to the school board office?? My dd doesn't have the tic part of PANDAS.. but the high anixity, sensory issues, mood swings I guess you would call it, and a little OCD. I don't think she would need any sort of special education either.. unless she got so extreamly sick with the PANDAS that she couldn't make it to school then she might need somesort of homeschooling sort of work.. But she is an extreamly bright child who loves school and not being able to go would kill her and make her extreamly sad.. So I hope it doesn't come to that..

that is why I would like to get the school onboard with helping me do things to keep her safe and healthy while at school.. The perventative messures to keep PANDAS as bay..

 

I am a sub for the schools.. and I know that each class room only gets cleaned once a week(at least here anyways) Even when kids go home sick from a class room they don't go in and scrub that class room.. if there is vomitting they clean that up but don't scurb the desk and chairs or anything..

 

I don't even know what to ask for to help her.. but some common sense things that popped into my mind was if a child left school for being ill in her class room to clean that class room that night, let me know if there is a known case of strep in her classroom(I don't need children names just need to know) So I can watch her and see if she is Ok.. sort of giving me a heads up, If strep is in every class at the school let me know maybe I should keep her home a few days(though chances are she might have already been exposed a little) till it sort of dies down so she isn't keep getting exposed more and more each day.. and let me keep her home and have it be excused and let her do her work from home so she can keep up with the class.

 

Or sort of like you were saying about your child throwing up at school.. there is the 24 hour waiting thing.. but IF we know there stomic is upset due to there meds and not from an illness let us let them go back to school the next day.

 

I don't know what sort of plan I need... but I need to let the people she is going to be around each day know that one minute she could be perfectly fine and the next bitting peoples heads off and she isn't doing that because she is being bad or mean, or she could be her normal happyself one min and the next hour crying her eyes out, sad, or scared for no reason what so ever and she doesn't even know what is making her sad or scared just that she is... or the long sleeve shirt she wore to school that day might have felt fine when she left but all of a sudden could make her feel like somone is stabbing her with knives...

and have them helping me keep this from happening to her by helping me limit the contact to strep that she come incontact with.

[tantrums]

I do believe we were VERY lucky. The school psychologist who did this eval was covering for another who was out on maternity leave. This psych actually has a child badly affected by strep and is very familiar with pandas. Imagine that luck! The people who were working on his specialized reading team were pretty clueless (one said he is just a bit immature and will learn, but was harshly corrected by the psych before I had a chance to open my stunned mouth!). So I am sooo happy to see they are specifically going to train the staff in pandas!

 

They are also calling in the Tourettes Association to train staff and to observe my son once school starts. Then they can give more specific recs in dealing with him specifically. Just hoping TS doesn't decline since it's pandas. I still believe this will be very helpful!

 

I think I will add in there that if he gets sick in the am from meds (although hopefully by sept. we'll have the food/med thing figured out), he can actually stay at school. Seriously - he was FINE today as soon as I picked him up!

 

They also are going to have to make allowances for him to visit the bathroom 30 times a day on those days he is urinating non stop. First grade had a bathroom in the class, other grades do not. I said I was worried about him being so obvious raising his hand and asking for a pass so much. They will give him his own pass and allow him to just signal the teacher that is where he is going.

 

Also, since he is now so high on the ADHD scale, they are going to mark an area around his desk that he needs to stay within, rather than expect him to stay in a seat And since he has sensory issues, he will have a box at his desk with clay and other items that he can manipulate when needed.

 

Overall, I am very pleased with the school. I just asked the teacher to start the process, met with a team to discuss and then signed a paper allowing them to evaluate. Check with your school though - you could have a different process. And the request isn't valid until in writing.

[airial95]

My son is still in day care, so we don't have a 504 as of yet - but we do have a plan in place with the day care as to how to handle, and all of his teachers and those who come into regular contact with him have been taught about PANDAS. One thing our school has done is notified every parent in my son's class (and my daughter's as well - even though she's non-PANDAS - what she's exposed to, he is too!) that they MUST notify the office if their child has strep. With my permission, they included information that there is a child in the class (no names) who has an immune deficiency that makes strep especially dangerous for him.

 

It's the school's policy that they be notified when a child has something contaigous so they can post a warning for the parents in the classroom - but they felt going an extra step and communicating directly with the parents in his class would be useful. They'll be renotifying parents every 6 months as he moves classrooms - eventhough most of the kids are all the same. This might be something you want to have included in your plan.

 

We also have the teachers filling out a very simple evaluation form every day (grade him on a scale of 0-9 - similar to Buster's system) on various behaviors so we can continue to monitor his progress. In doing that, we've been able to identify when someone in the class have strep even before the other child gets sick. Even his teachers have noticed the patterns. If your son isn't old enough or capable of telling you how he's doing, you might also want to ask his teachers to do this as well.

 

Although I haven't dealt specifically with the 504 (yet) - these might be helpful things to consider.

[ma2ar2rm2]

My son is still in day care, so we don't have a 504 as of yet - but we do have a plan in place with the day care as to how to handle, and all of his teachers and those who come into regular contact with him have been taught about PANDAS. One thing our school has done is notified every parent in my son's class (and my daughter's as well - even though she's non-PANDAS - what she's exposed to, he is too!) that they MUST notify the office if their child has strep. With my permission, they included information that there is a child in the class (no names) who has an immune deficiency that makes strep especially dangerous for him.

 

It's the school's policy that they be notified when a child has something contaigous so they can post a warning for the parents in the classroom - but they felt going an extra step and communicating directly with the parents in his class would be useful. They'll be renotifying parents every 6 months as he moves classrooms - eventhough most of the kids are all the same. This might be something you want to have included in your plan.

 

We also have the teachers filling out a very simple evaluation form every day (grade him on a scale of 0-9 - similar to Buster's system) on various behaviors so we can continue to monitor his progress. In doing that, we've been able to identify when someone in the class have strep even before the other child gets sick. Even his teachers have noticed the patterns. If your son isn't old enough or capable of telling you how he's doing, you might also want to ask his teachers to do this as well.

 

Although I haven't dealt specifically with the 504 (yet) - these might be helpful things to consider.

 

Thank you I like the idea of Letting the other parents know they have to call the office.. and letting them know there is a student in the class who strep can be extreamly dangerous to.. I think most parents would be willing to help out if they knew, well I know I would anyway..

It would be very hard in my case to have each of my children classrooms and teachers doing this.. I have 4 children and all 4 are in different schools come this fall. my youngest is in preschool where he goes in the morning and then there is also an afternoon class who comes into the same room.., then my PANDAS child is my 8 year old daughter she will be in 3rd grade this year at her elementary school. My older son is going to be a 5th grader this year and will be in the intermedate school Which is a 5th and 6th grade school with all the 5th and 6th graders in our town.. and they run it like a Jr High where they change classes for each class different room, different teachers, different set of kids in each class... Then you have my oldest daughter who is starting her freshman year in high school, so she will be moving class to class not just with the 9th graders but with 9-12th graders.. So I do not see me getting that news out to all those different parents. BUT the kids in my Pandas dd's school.. Maybe that is something we can do..