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mom24pandas

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  1. Big Mighty-can't comment on plasmapheresis as we haven't done that, but agree with dcmom--as long as he feels ok, go for it. Some schools will actually refund tuition for medical withdrawal (depends on the school), and if he works closely with the school's disability support office, they can help with everything from preferential course selection times and accommodations in classroom to placing him in a good residence hall health-wise (A/C, no dust or mold, etc.) with a carefully chosen RA and whatever roommate situation (single, double, triple, etc) would best support him. If he has a good roommate, that may also be someone who can be an extra line of communication if he feels ok opening up about the PANDAS stuff. I had several college friends (way, way back in the day, haha!) whose parents communicated often and closely with their roommates to help monitor stuff like eating disorders and mental health. So agree it can be done, just carefully....again, sorry not to be much help about your main question but hope that you are able to get some good answers on that as well. PS-I don't know from your description if your son actually uses stuff like testing accommodations now, but absolutely make sure he puts them in place next year--much better to have and not use, than the reverse!
  2. Wondering if others can share any recent experiences with low-dose monthly IVIG? I know this has been discussed extensively in other threads but couldn't find one that was very recent, so would love any updates from those whose children have had this. Dd8 has "normal" immune function, at least per bloodwork (everything is low end of normal except high IgE). She does have specific antibody deficiency (like a lot of our kids she failed pneumococcal titers) and has some slight imbalance with memory t cells. Immuno and neuro (whom I really trust) both agree low-dose (.4 g/k)is the way to go. We did one HD infusion a year ago and saw gains but they didn't last...well, I guess I should say there was a lot of up and down and some symptoms definitely remain, but overall she's in a better place than a year ago so maybe the gains did last. Any experiences/ feedback with the lower dose would be appreciated. Did you see improvement? If so, did it take longer to see impact vs. with HD? (We saw some dramatic effects within the week for our HD infusion, though it was really up and down). How are side effects with LD vs HD? Thanks in advance....
  3. Heartily agree with the poster who says to trust your instincts. Particularly after losing her mother, I imagine that being away from you for eight weeks would be really difficult right now even aside from the PANDAS/ separation issues. Have you asked your PANDAS specialist what their opinion is? Good luck to you and again, trust your instincts. You know your daughter and are ultimately the best judge of what will help her.
  4. This is exactly the dilemma we are struggling with....neuro has recommended homeschool for DD10, and I am beginning to think it would help DD8 too. Dr was v blunt with us--said either we could pull DD10 out of school, or we would prob need ivig to turn her around. I am really really torn. We love our school--has been great with accommodations, has built confidence in our kids, teachers are great, learning opportunities are hands-on and real, etc. etc. Pretty much the only problem with it is that it is filled with 600 other kids who get sick, cough, sneeze, etc. I also work full time and I think educationally, she would probably learn more in school--but we're not sure at what cost. Would likewise love to hear any ideas/ responses from others....especially now that we have about 2 weeks to make the decision before school starts!
  5. Hi…new here but have been lurking for a month or so since we first began to think our ds10 might have PANDAS. Wondering if anyone knows anything about this study, or have experience participating? http://clinicaltrials.gov/ct2/show/NCT01778504?term=swedo&rank=1 It looks to me like a diagnosis and testing study only--no treatment but the testing may confirm a PANDAS dx if that is warranted. Is that correct, and does anyone have any thoughts or experience about the pros and cons of enrolling in this vs going to one of the PANDAS docs? I was intrigued by the idea of having Dr. Swedo's team take a look at our kids…and we are also a little concerned about the costs of dx, as our dd8 is also showing some signs of PANDAS…so in the back of my head I am thinking about doubling everything we had budgeted for office visits, consults, etc…Any thoughts or more info? Thanks to all of you for all the info that has been shared here…truly a lifeline for us as we have tried to figure out what is going on over the past few weeks….
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