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MJS

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Everything posted by MJS

  1. Thank you for the replies! Will suggest a look at the probiotic - a few days off would be ok....will try anything. Granddaughters mood is still 'antagonistic' after being on the minocycline for 14 days. Will look at schooling options - initially Dr felt if she should be in school if she could get to school - but we will see if that happens this week.. Did anyone sign a medical release for the school speak directly to their child's doctors? ??? Is this a good idea??? (Granddaughter has to sign the release form also since she is 14 yrs old..) The school is pushing hard for this stating they want to explain the truancy laws to the Dr who does not give individual medical excuses for the absences during a Flare therefore the truancy issues now. The school has told us the medical disability does not exempt her from truancy even during a Flare. The school started with a 504 last year - before we knew what we were dealing with and changed it all to an IEP - without an eval (since she was not in school)- again before we knew what we were dealing with - stating reason of "emotional disturbance". IEP now states she has PANS . - they have given her a "special education category" & that does not make sense to me because without PANS she would not have a disability. At this point she is failing the marking period which started with the Flare. She was in E-school for the last half of last year before diagnosis. - We are probably looking at that again to take the pressure off. She does well when she gets to school......but apparently may not have the stamina to keep it up .(she does not want to. be singled out for special treatment). We feel so desperate but know others are dealing with the same issues.
  2. This is my first post. My Granddaughter, age 14 - PANS diagnosis on antibodies since July had her first flare resulting in her being out of school. Cause could be allergies or exposure to things at school. Dr changed antibiotic and rans labs to find mycoplasma IGG tripled since last lab. The set back was dramatic - and her fatigue was a huge issue to her getting to school - often falling asleep before she left for school. - now we have to deal with a truancy issue.... Her mood is off and she is not where she was the beginning of Sept - She is on probiotic and anti viral meds. Flare started mid Oct as it did last year......and every Oct for years before she was diagnosed. Would like some guidance/suggestions on school attendance during a flare and any other suggestions. I am at a loss of what to do next at this point.
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