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mrsdalloway

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  1. I'm wondering about how children know and describe a flare...does your child recognize a flare when it starts, or is about to start? What do they notice? Any physical sensations? Emotional? I'd like to help my son begin to notice and feel the signs of a flare approaching/beginning and I'm thinking the descriptions of other children could be helpful in our learning curve. Thanks.
  2. Thank you so much for posting your story.
  3. I keep hearing that IVIG may not be as useful as people once believed. Though I've just read a couple of posts here where parents whose children are getting monthly IVIG infusion has made a big difference in their kids' return to health--maybe even been the game changer. I have a couple of questions. I am in MA and as far as I know, no doctors here who prescribe IVIG for PANS/PANDAS. Anyone know any doctors in MA who order IVIG? And, does there seem to be a certain profile of the child's symptoms that does better/best on IVIG? PANS/Pandas only? We are also dealing with mold toxicity, and no improvement so far with the first-line mold treatments. And no relief using long-term antibiotics, which we've stopped for the moment. Also, DS (age 15) had a bad reaction to a prednisone burst--it worsened symptoms. Thanks for sharing any experience you have with IVIG.
  4. You might want to consider requesting the school put a 504 in place, for medical reasons. The fatigue is a direct result of the PANS/PANDAS and the school needs to accommodate. We've been down a long road with our schools. Or, if you think it's warranted, ask for an evaluation for an IEP. These will afford some protection for your granddaughter. And a good idea to build in some protections for flares--symptoms will increase and therefore greater difficulty to be in school and attend to school work. (You can ask for shortened school day, ability to leave class whenever necessary, pass to guidance office, check-ins with school social worker, preferential seating--not sure which of these would be helpful.) We had our town truancy officer threaten us when we first began down this road! It's not fun to have the school breathing down your back while you're preoccupied with your child or grandchild's health. There are online schools now too...
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