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thanks momslove. I am asking to see diagnosis letters.


my school seems to be getting tripped up b/c ds's diagnosis is PANDAS -- "s = strep" and they seem to not understand how his recent CDC positive LYME rash diagnosis would have anything to do with his immune disorder.


so I believe now, I need to have another letter with PANS.


I learned the hard way not to get too involved with explaining the disorder to school personnel -- now, unbelievably, even that is causing us trouble.

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I, perhaps, know so little, but I do know a little. :)


I'm part of the special education staff at our small school district in Wisconsin. My DD has an IEP because she has an identified impairment--Other Health Impaired (OHI). I know that state laws differ and actual practice differs from school to school within a state. In our district we may request medical records to document a diagnosis, but we do not require the parent to provide them. We are a small district so this doesn't come up often. I did provide some records to our school that detail some history (including some I had to correct).


The school won't be providing medical care so can't you just stick with PANDAS for their understanding and eligibility documentation? Once you get past eligibility, it is all about setting goals and describing appropriate accommodations and modifications. Are they failing to address eligibility or are they failing to provide appropriate services?

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My son has a IEP under the OHI code. I hav provided a very basic letter from the diagnosising doctor saying this is what my kid is diagnosed with, and this what they are being treated with. I have provided two letters, one for a PANDAS diagnosis and one for a subequent dagnosis for an autoimmune seizure disorder. I'd be happy to PM you copies of the letters.

At a recent eligibility meeting, the IEP team, which included the district representative, had to answer a small checklist about what consitutes OHI, and whether these qualities apply to our child.

Like momslove above, I'm not following what the CDC lyme thing has to do with anything. is the PANDAS dx not enough for an IEP? If Lyme is impacting your child, can you get a short letter from doctor saying "i have diagnosed this child with Lyme am treating him?"

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it's what I call the curse of 95%. he does well 95% of the time, so when he doesn't, they believe it's a behavioral choice.

he's not scared to go to class -- he just doesn't want to.


so they don't really care if he has PANDAS or lyme -- they see it as a choice b/c he makes the right choice most of the time.


there are no accommodations for anxiety b/c they don't believe it is anxiety -- it's a choice.


it didn't really matter, because he was doing well. now he's not and it's a disaster.

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I understand what you are saying.


The truth is medical conditions interfere, at times, with education in a variety of ways. Consider a child with a seizure disorder. They may do just fine for a period of time and then have a seizure that makes some educational accommodations/modifications necessary. It is not a "choice". Consider some cancer treatments where a child may attend school, but then need time off for treatment or because of the side-effects of treatment. It's not a "choice".


Unfortunately, it seems to be the nature of PANS and recovery from PANS, that our kids suffer something like a relapse as they are exposed to infections, experience "herx" reactions, have adverse reactions to treatment attempts, and simply lose hope. It's not that our kids don't make choices--good and bad, but the evidence seems to suggest that your son was "doing school". Behavior exists for a reason. Why would he suddenly choose not to do what he's supposed to do? It's because he's suffering medically.


Sorry. I'm preachin' to the choir here.


I have a letter from our lyme practitioner written to address attendance concerns. If you would like to see that, let me know. It focuses only on lyme and co-infections even though my daughter has other infection issues, but maybe it would give your medical provider ideas of issues to address for the school.

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Here is some wording that may be helpful:


As _____ symptoms may occur in a waxing and waning manner and may not be evident at all times, I recommend that the above illness and symptoms be considered in all academic planning decisions to enhance the academic progress of this patient. (You may want to be more specific with accommodations).


Can you pm your email to me?

Edited by philamom
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Do you have a good psychologist?


I have found the school has no clue how to deal w/ anything- I am on both sides as I work as a special ed para.


They like an authority (not the parent) to spell out exactly what to do- they also LOVE paperwork. If you could have a psych brainstorm a list of accommodations, and how/when to implement them- that would probably be a huge help.

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We also have an IEP w/primary diag OHI (but orignally due to a host of other known issues prior to the PANS diag.). Then we have a general letter from our PANS practitioner stating ds15 is being treated for PANS (AE), but it doesn't go into symptoms. I also attach to the letter a PDF from Stanford's site http://www.stanfordchildrens.org/en/service/pans-pandas/what-are-pans-pandas? .

I like @philamom's expansion on this so will add that to the letter next round.


We are met with varying degrees of belief/attention that gets paid to the diagnosis, so unfortunately all the documentation in the world will just be overlooked by some, eg. our special NPS school is good at taking PANS into account but our actual school district is not, they think it's all a behavioral issue and therefore he should be at a different school. Don't get me started!

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I agree with dcmom. A psychologist's letter on recommended accommodations for your child's specific difficulties, irrespective of presenting infection or autoimmune disorder, is what the school needs. They have no comprehension about the psychiatric effects of infection.


Our ped psychologist was good enough to diagnose DD with Asperger's, Tourette's, ADHD and motor delay before she suggested probable PANDAS and we subsequently discovered lyme, bartonella and now babesia.


It was with the above mentioned diagnoses that I approached the school for the IEP, not the lyme/coinfection test results.

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