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Everything posted by pr40

  1. you said your dd was diagnosed with encephalitis. if that is the case, what grounds does your insurance offer for denying IVIG? I would try that way. there were older posts on how to approach insurance and you can repost on the same topic asking about the experience with your specific insurance. Dr. B from CT may have advice how to approach, I think, Blue Cross. also, if you are close to Yale, you can see if they would do it for free as a part of the PANDAS study.
  2. if there is any indication of rheumatic fever, your dr is obviously negligent. You should go to another one, even to an emergency room for abx. there is no replacement for abx at this stage. there are abx you can get, I heard, on line w/out prescription. I haven't looked into that and cannot suggest how it is done or if it is legal.
  3. nac is good for colds because it is good for mucus. it has no other effect on colds.
  4. nac hard on stomach? why exactly? it is hard for those who cannot process sulfur -- at least that's what I heard.
  5. you need more time to figure out what her state is. it seems obvious that prednisone and augm are having an effect. for us, it took about three months to figure out that we have cycles that repeat. calm, agitated was the usual than the difference btw calm and agitated states got smaller and smaller. now, it sometimes disappers for weeks, months when we are lucky. then comes back for a week or so. great that you were able to see a dr willing to treat pandas. good luck.
  6. i would say stop abx when you stop CBT for what I think is the obvios reason. i.e., he is better after the initial abx but NOT symptom free. on supplements, possibly fish oil and vit D need not be given together, only fish oil?
  7. change neuro. it is not clear how they are threating chorea. long term abx? the treatment may be the same and the diagnosis may not be all that important. unless your child has a special infection or sensitivity like gluten or mold that would contribute to his psychological and behavior reactions and is not treated by his current abx. what you say reminds me of our ds -- no blood tests ever came positive and yet his symptoms (kind of autistic, kind of hypper active) go away on abx combo and come back when he stops takeing them. abx have prophiactic but also antinflammatory properties. some
  8. did you try iburprofen? did you try steroid burst? did you try to descrease inflammation? do you know if she might have food intolerance, metal posioning, mold issues, lyme? some of the symptoms you describe would be the same and abx would not help. usually, you should go on an abx combo if you don't see results. you are close to dc --- you could try to get apt there too just in case
  9. we did it with the kids. ds had no problems. we used autism settings. no immediate results. dd, with depression positioning, lasted for 5 minutes if that. she is extremely sensitive and thought it was painful, started crying, and so on. we'll try again.
  10. there is no absolutely reliable test for lyme as of yet. you can consider it a clinical diagnosis, i.e. one based on symptoms alone. in your place, if my child had Lyme symptoms, i wound not be worried about having something black and white before starting treatment as there is nothing black and white other than her symptoms. start abx, perhaps two different kinds, and see if there are any changes within a few months. give her probiotic at the same time. also, you can start a herbal treatment for lyme and see if it works -- consult earlier posts on this forum for possibilities.
  11. i got the cheepest I could find, https://thebrainstimulator.net/product/the-brain-stimulator-advanced-tdcs-kit/ it seems to work well. one difficulty is choosing where to place electrodes. here is a site among others http://tdcsplacements.com/
  12. depression. we need more time. with me, it's mood. i think i noticed mild positive resutls, but, again, need more time we are hesitating to give it to children bc there are only a few studies. here is one that can give you the idea of how effective stimulation can be http://www.hindawi.com/journals/bn/2014/173073/
  13. yes, but only on me and dw. Can't tell if there is a difference yet. That is the problem mentioned in the NY article: how do you know it worked? I can say this, no side effects, no negative effects, and dw seems to be slightly less symptomatic. on me, i can't really tell. we decided to do it once a month.
  14. you may want to think about how to convince your dr to prescribe long term abx. first, NIH pandas site, should be helpful. then, you may also want to mention rheumatic fever and heart problems caused by strep both of which have long term abx as standard procedure. we are talking about years of abx, not months. rule is a year w/out syptoms before discontinuing abx. you may want to inform yourself why this is the case before you try to convince your dr.
  15. i made a post. i did not e-mail you.
  16. if this doesn't work, you can contact NIH, sue sweedo, and ask for advice, or lehman at yale.
  17. igenex is very sensitive test and the results here don't seem to indicate much of lyme or coinfections. is she on abx? has she ever been? lots of cavities would indicate bacterial infection. dd had the same. why not go dairy free as well? gluten has a large protein molecule and so does the protein in dairy. I would focus on infections and inflammation and not lyme. don't know about hormons, sorry.
  18. you are not saying that you are not going to do long term abx bc lyme bacteria can hide in biofilms? adding monocyclin might be a solution but -- I am here out of my depth -- how do you know your child has lyme? your original post does not say anything about it. if someone is taking goat yogurt, he/she is not dairy free. goat for many people is just the same as cow. sheep's milk tends to be the better toleraded alternative. I mean to give you some ideas but do find it difficult to understand what it is that you think your child has.
  19. just on homeschooling: we had similar symptoms and did not homeschool. 2nd grade was tough but she had to deal with it. and she managed. she was on long term abx to prevent strep reinfection. one thing: the point of prophylactic abx (combo, zytro and amox) is to let kids go to school. abx do help in other ways, too. a year later, we switched to Montessori school to make her life more manageable. you are already there. since you asked for opinions, mine is yes school on combo abx. one thing: you seem to know much about pandas, but don't mention diet. that's another thing you can try
  20. "Right now I can't get my child to do anything. He won't even get out of the car for soccer, which he loves. And normally he loved bike riding but is now driving off the trail, hitting trees, crying and panicking over the site of any flying insect. What a mess." I know what you are talking about. Indeed, when a child is in such an exacerbation, calming him down is all you can do. It may be that our ds is in general improving but it is also possible that his martial arts skills have helped him handle the anxiety. Just went yesterday for our first mountain bike ride of the year. He didn't
  21. hi, dasu, our ds was 6 when he started, is 7 now. we started with a very small class of the same age. only two other kids. that made it possible for ds to join in rather easily. our local kung fu is a part of Steven de Masco's chain. they start young kids in small groups on purpose. ds "progressed" to a bigger group only when he was ready to handle all the noise and crowd. check out other martial arts facilities. some of them seem to be able to handle "special" kids like ours
  22. i am of the try everything school. go low and slow. we tried lithium orotate and it had some positive effects but many negative ones -- ds became very hypper. and we had to discontinue after a week. look for back posts on orotate. some people had success with it. we have, rather had, similar study issues with dd. did not discover magic wand but one thing did make things better, making it a routine. i.e., if this happens every day at 4pm, then eventually he will get used to it or he will get better prepared for it.
  23. i should clarify: our ds has been in a flare when he started kung fu BUT the flares that he had at that time, indeed has now, are not as bad as they were at the beginning three years ago. we could not have gone to martial arts or anything else for that matter when he was in those awful early flares. the flare he had when he started MA was the kind of flare during which he would have gone to school, i.e. he is difficult but manageable, not impossible. I am very sorry to hear about your ds, Joybop.
  24. Recent post on CBT made me think about this: we tried cbt and had some success. hubner's book was more helpful in forming a strategy BUT both failled in creating a habit. For habit forming -- learning how to control oneself -- martial arts were, by far, most successful. ds started when 6 and 1/2. he was in a flare at the time. after a year, we have a little jedi. there is no talk ever about fighting and violence. martial arts is about self-defense and, by and large, movement. if you have no experience, think of it as a form of dance choreographe. i would recommend it over CBT anytime
  25. It is very encouraging that a) scientists are focusing on inflammation and making small breaktrhoughs have identified this specific protein active in alergies. That, including also research on Parkinson's and MS, makes me think that there will soon be a breakthrough in understanding the underlying meachanism of P/p. http://www.medicalnewstoday.com/articles/293075.php
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