Spacecoastpandas
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Posts posted by Spacecoastpandas
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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!
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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!
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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.
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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!
Help with 504
in PANS / PANDAS (Lyme included)
Posted
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.