IEP Meeting_PANDAS Supports

[Healingthedude]

My son has been having a bad flare of PANDAS since May of this year.

I need some documentation to bring to his IEP meeting next week along with his Dr recommendations for supports.

His teachers think it is all behavioral and treating with aversives and consequenses which is worsening situation.

 

I saw some people here asked to be alerted when there is strep in the school.

Has anyone asked for a childs aide to be tested to see if a strep carrier?

What is reasonable and what is not?

 

I think he needs to have a safe place to calm down when agitated, relaxation techniques to calm down,

A new plan to address OCD issues and high reinforcement for good behavior.

Possibly more OT to deal with sensory issues (he is toe walking and biting his shirt since the flare up)

 

Any literature links or a suggested list of supports would be greatly appreciated.

Thanks,

Carolyn

[KaraM]

PM me wiwth your email address and I'll send you this article. Maybe you will find it helpful. Even though it's not PANDAS specific (it does mention PANDAS). It really addresse what OCD is, how it may present at school and what types of accomodations can be made.

 

Kara

 

 

 

[airial95]

We have our IEP meeting tomorrow afternoon as well. I think we're approaching it as two seperate issues. The goals and such would be similar to another child with OCD, ADHD and ODD, however, the accomodations required (notification, etc...) will be catered to the health/PANDAS aspect of it.

 

I'll let you know how it goes!!!

[SarahJane]

I'd also try to get things like math & handwriting deterioration/frequent urination/perfectionism/etc... that may occur. Showing a list of symptoms can help cover that. In public school last year, my son tended to have trouble during the afternoons...when they did handwriting & math. Perfectionism was also an issue. I can't say it was totally related to his undx'd PANDAS at the time, but it's suspicious to me even tho' his academics didn't suffer. I suspect there was at least one strep carrier in his class because the exacerbation lasted 3+ months with good days, bad days & horrible days. We didn't have an IEP but were heading to a 504 if we'd stayed in public...anxiety dx prior to recent PANDAS dx. Glad I'm homeschooling this year!

 

GOOD LUCK!

[michele]

http://www.schoolnursenews.org/BackIssues/2003/0903/pandas0903.pdf

If you PM me I have alot of info on IEP. We have had PANDAS since before he started school on an IEP in kindergarten. I can give you some tips. Ours is under OHI. He gets Math and Language arts with the tutor 3-5 days a week for up to 50 min a day. Lots of accomodations like extended time, not counting for handwriting, testing in small group, OT help, social skills help, preferred seating, work breaks, organization, daily journal between school and home. I could pull it out there are more. It has been a work in progress for four years. Every year it gets better. Just get things in writing. Their word doesn't hold up. Don't sign anything unless you agree completely. You can give PWN if you don't agree with the terms of the IEP/MFE. Because of his ADHD he really needs extra assistance for school work. We may be getting an aide next since he is not doing well academically with his IEP right now. Also we are in the process of getting an IEE done and a FBA. Remember they are entitled under IDEA to FAPE in the least restrictive envvironment and a specially designed instruction.

Michele

[Healingthedude]

Thanks everyone. Too bad Michelle is in Ohio, I'd like to hire you to come to my meeting in NJ to go over the PANDAS part.

They always look at me like I am crazy when I bring it up.

 

Definitely would like whatever info you have to offer