dasu
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Posts posted by dasu
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What happened first in the 4 month period, the vaccine?
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Thanks for sharing!
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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?
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I would also suspect anxiety as my daughter's headaches correlated with actions that provoked anxiety..
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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.
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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!
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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/)
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What a crazy story. I have never heard of local PDs assisting like that. Glad your son is better now!
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You have a heartwrenching story. I do understand the feeling of wanting to give up. This torture goes on for years, it seems that most of the health care industry, insurers and even friends and family are fighting against appropriate care. It seems there are few success stories. I totally agree - you are not a failure as a parent. You sound like you have poured all of yourself out into the bottom-less pit of PANDAS. I hope that you can find some rest and comfort in this time and that your daughter can one day find recovery.
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I have heard the pay-first approach has worked with UHC with a few other people. We also use Dr L. We did try that for IVIG and was successful the first time, not the second.
Andrea at Dr L's office seems fairly experienced with this.
BTW what is the cost for rituximab? I thought the patent expired so cost should drop?
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My kids have been kinda-sorta REID for a while. REID is more than just low glutamate but also targets meat consumption at 20% (I think) and lots of raw greens, vegetables etc...among other things. Its super expensive to do this. And like the posters above we found it super difficult to do, given all of other things they have given up, and it has a lot of social impacts on the kids. We have made progress reducing free glutamates (REID does NOT worry about glutamates in vegetables, they are bound) We try not to have processed meats, e.g. use fresh pork sides and salt them afterwards. They only drink raw milk. We try to do lots of greens but mainly in the summer out of the garden (cost.). No processed foods, which means we eat whole foods. Very little sugar. But I can say that we do see improvements.
To us the big question is their seasonal PANDAS spikes. If we chart their symptoms they begin to increase in October and peak in December and then have another shorter spike in the March or April. We used to think it was allergies but wonder if its something else like diet. For example we used to let the kids do Halloween candy but noticed they would be awful afterwards.
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Urinary issues are one of the first symptoms of strep for my daughter.
One of the grand rounds slide decks shows that the early treatment in a flare reduces duration. Its critical to get swabbed and cultured. Also, consider round the clock ibuprofen and if you have a doc steroids.
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By a dose chart that does seem high but I have no idea. I would ask a pharmacist.
I have not heard of many P kids on keflex.
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Another great story, particularly because this ends with success.
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What genetic test did you run?
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Funny. We payed cash up front - there was no other option. UHC payed for some (40%?) of my kids IVIG after the fact.
Peeling fingers and toes?
in PANS / PANDAS (Lyme included)
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she is on augmentin, so hopefully not. Its only a winter-time thing.