Jump to content
ACN Latitudes Forums

dasu

Members
  • Content Count

    261
  • Joined

  • Last visited

  • Days Won

    17

dasu last won the day on October 9 2017

dasu had the most liked content!

About dasu

  • Rank
    Advanced Member

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

  1. she is on augmentin, so hopefully not. Its only a winter-time thing.
  2. What happened first in the 4 month period, the vaccine?
  3. My daughter has also experienced peeling skin in her toes. She seems to have reynauds. One other interesting observation is that this symptom started after she got coxsackie. Perhaps that is related?
  4. I would also suspect anxiety as my daughter's headaches correlated with actions that provoked anxiety..
  5. We tried several homeopaths. The initial intake fee was always high and kind of laborious to go through. None of them netted any positive changes, and worse, when we brought that up they did nothing to change. Maybe there are better but all of the homeopaths were known to P families. I have heard other success stories, but like about every other P treatment, what works for one doesn't work for another.
  6. We fought UHC for months before their final external review also stated it was unproven. They play a lot of games, inject errors to obfuscate, and invent new processes and rules as they go. Put bluntly I despise that company for its unethical and immoral conduct. I tried, on recommendation, a twitter campaign which did nothing. I have also heard that if it gets coded as Autoimmune encephalitis it gets a warmer reception. I wish you better results than we had!
  7. Flares go a long time for my kids as well. I would also like to figure that out, among many other things. At the heart of it, I am of the opinion that something else is driving Pandas as I dont see any family history yet both of my sisters have P kids. Its one or more of diet, plastics, pesticides, glyphosate, vaccines, EMFs or who knows. The frustrating thing about Pandas is that what works for one person doesnt necessarily work for another. Both of my kids did a T&A without any success, in fact it was after the T&A that we went into the worst flare.
  8. Funny we are both in the same places. Ugh...pandas. Yeah I haven’t seen much bad about dr Fox. So please keep me posted. We used Rydkand for a bit but he never pushed any treatment. We tried a naturopath in Staunton without any success. So many talk the talk but can’t back it up. If I could afford it I’d see more of L but we can’t swing the money for rituximab x2 so are looking at alternatives. For now the kids are both on augmentin and Ritalin.
  9. Sorry to hear this. It’s a painful and often hopeless situation. My kids also flare in the fall and generally improve during winter or spring. Never figured that out but it’s typical with many p kids. I’ve considered allergies, mold, and seasonal changes in the immune system (nothing to do about that one) but the largest impact appears to be cumulative exposure. Have you considered home schooling? There is less exposure and increased freedom to flex with the symptom.
  10. Funny we also see Dr L. So I totally understand the only way to get an answer is book an appointment and we live 2 hours away. Not sure about her staff leaving there is high turn around in that office. My son is now trying Dr Fox in Charlottesville but it’s too early to tell. For now blood work is completely normal except Ana. Shocked her. So if she is good my daughter will also see her. Still think about shafrir though. He pushes insurance which is a huge plus. That is the biggest difference. She is also a more approachable and my kids always liked taliking with L except during the worst flares. They both use current guidelines and don’t appear to mess with Lyme etc.
  11. We tried him once and ended up going on another direction mainly due to insurance. He is not the best listener, pushy with questions, kind of blunt. I guess typical Israeli attitude. On the positive side he is available and responsive and truly will work for you. Sinai hospital is in a rough area but the staff there are helpful. The same cannot be said of shafrirs staff.
  12. We have struggled with the very same thing - family we love and enjoy so much yet have health issues that trigger flares. There seems to be no way to avoid flares even with prophylactic abx and even avoiding times where they were explicitly sick. Perhaps they carry something who knows. We have to decline holidays or make due with some sort of outdoor activity like hiking.
  13. Its hard to comment without knowing much about your son. How old is she? Some more information might help. Have you read through the entire symptom list? Have you read the article OCD in young children? But if I can guess you did not go to Dr T without very strong reasons.
  14. My kids follow a similar path declining in October. Although this year we have had no summer respite. It also seems that with the new year they begin to slowly improve. This doesnt make sense as half life of Igg is 21 days. Our current theories are reduced levels of vitamin D, increased exposure to sick people, dietary changes (less greens, fresh vegatables) or seasonal changes to the immune system (https://www.nhs.uk/news/lifestyle-and-exercise/study-finds-seasons-may-affect-immune-system-activity/)
×
×
  • Create New...