PANDAS in school

[michele]

Could some of you here who have kids who been diagnosed with PANDAS syndrome describe the services your kids are getting through special education in schools?

 

Also if you would tell if they have other conditions that they get services for. My first grade son currently gets an IEP under IDEA in OH for Occupational therapy because of fine motor delays. I want to add to his IEP because he is struggling in Math, writing and spelling and handwriting. However they claimed he tested too well cognitive/ ability on the MFE for addtional help last fall. Now we are revisiting the yearly IEP meeting and he is really needing additional help in Math and Writing. Support needed in 16 areas on the report card. His teacher is making all the accomodations on her own and we are helping and getting a tutor and OT privately. They gave him Title 1 Reading but you don't need an IEP for this. His reading is doing well now with the support!

 

I am not sure how to word this on an IEP to get additional help? OHI?

 

Just wondered how others here are working with the school?

We also have a diagnosis of ADHD and tourettes. I would think that would help with the school? Do others here feel the PANDAS has brought on tics and attention issues that have developed into tourettes and mood issues?

 

They act like we are making this stuff up because he is so good at school. They see no tics or negative behaviors. Well today I talked to the special ed director and he went to a workshop yesterday and a Dr. Nevada Reed who is independent and doesn't take insurance in my area spoke and talked about PANDAS. The special ed guy seemed to get the tics and other issues which nobody else has gotten before. I am praying he will help us. I want to be prepared Mon. when we revist the IEP. The word may be spreading!

[colleenrn]

Michele,

I can't help with info on school services, but I wanted to comment that my children do not act at school like they act at home. Even when my daughter's tics are at their worst, she some how keeps them to a minimum at school, then lets loose at home.

My two boys who are hyper, emotional, throwing fits, not paying attention, etc... at home, behave perfectly at school. People always comment when I tell them my kids have PANDAS, "gosh, I would have never known that by watching them"

Colleen

[Pezmom]

I'm not sure how helpful I can be, but will share what we are doing for our son. Prior to the big exacerbation we experienced in the Fall, he was in private school so we had never done the IEP process. We've been homeschooling him since while we've gone through the IEP process to get services ready for next year in case we send him to school in the district. They are including a medical component to the IEP to address PANDAS. Our doctor is writing a letter to describe PANDAS and all that it can entail....all the possible ways it can impact Cam. As a part of that, we will have an emergency plan in place in case (God forbid), it strikes again. That will include accomodations for handwriting, behavior, and help with things like math. Once we have it done, I will be happy to share the wording. We've also done an evaluation to get him set-up with tech services for if his handwriting tanks again. Our son also didn't qualify for much. I think it was just based on behavior even though his cognitive skills had tanked and his processing speed is super slow now.

 

PANDAS definitely caused the Tourette's symptoms and inattention issues in our child. Now that we are better treating the PANDAS, those symptoms have lessened considerably. Infact, the tics are completely gone now.

 

Hope that's helpful.

 

Jena