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Posts posted by Spacecoastpandas

  1. I think many of us have an unusal battle. Because of the nature of this condition - theoretically they are fine when they're healthy, lunatics when they're sick (and I mean that nicely :D ) , leads many in school to believe it's behavioral. Put that on top of the fact that lots of our kids have good grades, gifted, etc...and are usually very well behaved, and you get the "they know better than to behave like that" issue too.


    I've always tried to take the behavioral aspect out of it when describing PANDAS for the school. It's rheumatic fever of the brain - period. Brain gets inflammed - period. When brain is inflammed these are the "symptoms" that present - period. I purposely try to avoid using the word "behavior". The OCD, ADHD, ODD, Tourettes are "symptoms" of the disease - just like fever, sore throat are typical "symptoms" of strep. From there, you just need to focus on how it impacts them academically because that's all they care about (learned that from deailng with my youngest).


    My youngest is 5, was dx at 2, and transitioned into the school district at 3 from Early Steps - so we have his IEP in place for when he starts kindergarten next year. But considering he's already reading WAY beyond a 1st grade level, doing complex math etc...we expect to have this same problem with him over the years. His current teacher and I have already discussed the appropriateness of adding a behavior plan to his IEP - and it will likely happen next year for K; but as a tool to help him self-regulate. A reminder of what he's supposed to be doing vs. consequences for anxiety.


    He has spent 2 1/2 years in a special ed pre-K where he has THRIVED and will start K at a charter school with my daughter next year When she was dx, our previous experiences dealing with his IEP helped us deal with her school - and we had very little problems. This year, they already told me there are 2 other kids with PANDAS at the school other than my daughter - and it was the information WE provided to them about her that helped them through the proccess with other families.


    I do still worry - on a scale of 1-10; my son is a 10 when he's symptomatic while my daughter, at her worst is maybe a 4-5. They have no idea what's in store for them when Hurricane Broderick hits next year!


    airial95 - I like your suggestions on how to present symptoms in a matter of fact way and your idea of being to the point about what he needs to be successful academically. I am glad your little guy has got a great plan in place. I am sorry you are having to deal with 2 children with this. Thanks for the info on your son's plan - I like the self regulation wording. The teacher has done a great job of making modifications already for my ds, we just need to get it all into a 504. I feel more confident about getting this plan done now that I have some great suggestions. Thank you.

  2. spacecoast -- do you have this? http://www.nimh.nih....broadened.shtml


    there are some really good quotes from Dr. Swedo in there that may help drive the point you are trying to get across. i can't really remember -- i think i highlighted or somehow pulled out a paragraph. at the time, i had found an old flowchart that listed Swedo's title at NIH -- great graphic -- but then i found out it was a couple years old and not really accurate anymore -- oops -- but it showed a great point for me -- and not really erroneous, just not fully accurate.



    i do agree -- you've got to get them to understand the point you are trying to make, however -- my advice would be to try to do that as briefly as possible -- hopefully, a doc letter will have them get to 'oh yes, right, he's eligible' and then get on to what he needs. i really feel i made a big mistake last year in having them see me as an expert and feeling they weren't sure of the disorder and what to do -- this year, our school has taken a different attitude in yes, they may not know of this specific disorder -- but they can see behaviors and learning issues that they have familiarity with and know what to do about. so, it's much more successful in looking at ds, his needs and how best to meet them, rather than 'wow, we've never heard of that and aren't sure what to do.'



    Smartyjones - Thank you for the link to the NIMH article - I did not have it. Also, I appreciate your perspective because I feel what happened to you is starting to happen to me. I will try to get things moving with getting his needs met and less about explaining PANDAS. Sometimes we just need someone to tell us to try a different approach - You did that for me. Thanks!

  3. I would like to thank ALL of you who responded. You gave me some excellent advice. I will definitely have the doctor write a letter about my DS10 PANDAS as a medical condition and all that he needs. I had already given the team some information about PANDAS from the Pandas Network and the Psychologist had written a letter about my DS10 OCD and the modifications/accomodations he would need. However, this was not enough for them. The don't seem to be getting the "medical" cause here. They seem to feel my child is acting out when he has an anxiety attack. It is very frustrating to me. I will try to gather some more basic information to share with them. I really appreciate having other Moms to turn to here. Thank you for listening and for all your super advice!

  4. I am not sure about the bleach ratio for a strep bath however, my son has a pimple like rash that appears when he has a flare. We were told it was folliculitis and given topical antibiotics. We have used the topical antibiotics with little results. When given oral antibiotics, the rash will usually clear up in a few days along with reducing or eliminating his PANDAS symptoms. I consider the rash one of our early warning signs that he has a Strep infection and needs the oral antibiotics. Zithromax has cleared it up for us. I hope this helps.

  5. I am new here and dealing with the elementary school regarding getting my child a 504 plan. The school keeps insisting on a Behavior plan instead. My child is fine when not flaring and maintains excellent grades. However, when there is a flare, my child can experience high anxiety and requires shortened assignments, more time, etc. to get through school work. Any ideas here? Thank you!

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