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Update on IEP/504 question Letter from doctor


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I received many helpful and detailed responses to a thread I started a few days ago about IEPs and 504s for PANDAS kids. I have learned a lot in a short period of time, lol! Some of that feedback included the suggestion to have a letter from our doctor confirming the PANDAS diagnoses when I go into the initial meeting with the school district. I took that suggestion to heart and drafted a letter for our PANDAS-aware pediatrician to sign using, in part, some wording provided by ma2ar2rm2 :).

 

My intent in writing this letter was to use it as a confirmation of the existence of a medical condition. I also wanted it to be an general introduction to the school district about PANDAS and a conversation starter as we work to figure out how best to support my daughter in a school environment. For this reason, I made it as broad as possible, covering the potential for either an IEP or a 504.

 

I just heard from the ped's office that she's accepted the letter as-is (no changes!) and will be putting it on letterhead, signing it and sending me some copies! I thought some of you might find it interesting and/or useful to see what I drafted. Here's the letter:

 

To Whom it May Concern:

 

This letter is to certify that [my child] is currently receiving treatment for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep (PANDAS) and may need some accommodation and/or support due to the psychiatric repercussions of the syndrome.

 

When a child with PANDAS contracts or comes into contact with Strep, their body produces antibodies to the bacteria that attack their brain and cause inflammation. The swelling in their brain can have dramatic short and long term consequences for the child. This is not a communicable disease, but rather the over-reaction of the child’s immune system to the strep bacteria. Once this immune response has begun, the child may experience PANDAS exacerbations from contact with any virus or bacteria.

 

PANDAS symptoms include:

 

•heightened anxiety

•obsessive/compulsive behaviors

•age inappropriate behavior including separation anxiety,

•personality changes and emotional lability (e.g.,irritability, sudden unexplainable rages, fight or flight behaviors)

•tactile/sensory defensiveness

•hyperactivity mimicking ADHD and defiance issues mimicking ODD

•daytime urinary frequency

 

These symptoms, when they arise, will need accommodation and/or support in the school setting. It is important to note that PANDAS symptoms generally have a ‘saw tooth’ pattern, which means they will remit for months at a time, and then flare when the immune system is challenged by strep or viruses.

 

Common accommodations and supports for PANDAS include, but are not limited to:

 

•Allowing extra time to transition into the school day (arriving early, special supports from school personnel, etc.)

•Allowing parents to keep their child home on a day when s/he is having symptoms, as well as exemption from the school’s policy on excessive absences

•Taking timed tests in an untimed setting

•Understanding and support for anxiety and other issues (warning before a fire drill or other anxiety producing events, extra bathroom breaks, extra time for homework assignments, etc.)

 

Please feel free to contact me with any questions about this disorder. You can also visit the website www.pandasresourcenetwork.org which has good basic information on PANDAS.

 

Sincerely,

PANDAS-aware Doctor or Specialist

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