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pr40

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Everything posted by pr40

  1. pr40
    here is a neither reasoning: cause might not matter since you might be dealing with an auto-immune reaction. What set it in motion, the initial infection, would show as igm. if it shows as igg, system is attacking itself. and so you'd need to focus not on the infection but on the reaction. that does not mean not taking abx but taking them for prophylaxis, not to make matters even worse, and for other than anti-bacterial properties of abx. so treatment of the condition would be along the anti-inflammatory lines. this is just a possibility, of course. our kids, dd especially, has similar symptoms and similar igenx results
  2. pr40
    I remembered another think, methylcobaliamin b12, when we first used it, stopped our kids in their tracks. we did 1000mcg sublingualy. the effect did not last. so you are not dairy-free. you may want to try it.
  3. pr40
    this is what we use http://www.aquapurefilters.com/
  4. pr40
    for us such silliness was a part of a cycle. it would last a few days then go away to reaper a week or two later. the same situation with two kids going back and forth and making it worse. now, do I have a suggestion? overtime, we saw lessening of the symptoms. for us, discipline did help but only somewhat. separating them, each in their room. taking long time outs -- time to calm down, we call it - also helped. you got some great suggestions above, if you post what your kids are taking now, we might notice something that is missing. are they on fish oil for instance? did you try ibuprofen? how about a diet? cq-10? olive leaf? any other anti-inflammatory? for car trips, did you try books on tape? because they are so obsessive, our kids get so focused on them that 100 minute trips are no longer a problem.
  5. pr40
    Kyle williams is Lekhman's student. We saw him in January. His secretary's e-mail is pdownes@partners.org. there is a long waiting list, of course. But my understanding is that for urgent cases, they make exceptions. They are trying to be a PANDAS clinic and should be able to understand your case and at least try to do something. They are also connected to child psychiatry dept at MGH.
  6. pr40
    beerae22 -- Since you live in CT, I assume you also considered the new pandas center run by Kayle Williams at MGH? Has Yale Child Center not been helpful to you? They were the NIH center for Pandas study and I would assume that they could be very helpful to you. best of luck
  7. pr40
    If you have personal experience with dr Kalish or have heard things, could you please send me a personal message? dw needs to see a rheumatologist who also knows about lyme and he seems to be sought after but the wait is until October and she does not want to waste time if he is not the right dr for her. I googled him but could only find general info and his scientific work. thanks in advance!
  8. pr40
    there were very useful posts about how to deal with school. I would suggest you find them using search function. there might some info among the pinned materials as well. in general, you may want to write a letter to principal and teachers and try to explain what your child has. follow the letter example you'll find doing the search of the forum. Go slowly, step by step in trying to explain what your child has. some kids here have 504 and it might be useful to apply for it. just the mention of the 504 will help them understand how serious the condition is.
  9. pr40
    can you say why would would not do IVIG? if your cardiologist suggested it and if it is a standard treatment for pANDAS, why the hesitation? IVIG is a kind of blood transfusion not really medicine and as such may be less invasive than herbal treatment.
  10. pr40
    For you thinking of going gf, here is an example of how you can make a staple dish. it's really not all that difficult. http://www.loveandlemons.com/2013/07/22/blueberry-banana-pancakes/
  11. pr40
    qannie, I never liked pancakes and I have no experience with them. Here is the logic however: what makes wheat flour good for baking? gluten because it acts as a pliant glue. Xanthan gum does the same. Garbanzo flour is heavy and tasty as is corn meal. Starches (potato, tapioca, corn) are light and absorb a lot of water. I can improvise: 1/3 garbanzo flour, 1/3 tapioca starch, 1/3corn starch, one egg, some coconut milk, some oil, one teaspoon of xanthan gum. perhaps, coconut yogurt for added aroma. if pancakes are your chief problem, you don't really have a problem at all.
  12. pr40
    qannie, there is a substitute for everything. just ask.
  13. pr40
    Hi dasu, I suggested you make another post about drs in va because I thought I remembered previous posts. here is one thread, http://latitudes.org/forums/index.php?showtopic=21365&hl=reston#entry164918 and another http://latitudes.org/forums/index.php?showtopic=17639&hl=reston#entry140764 there may be more. info is overwhelming but this site is like a gold mine of information for pandas parents we also had difficulties traveling but have discovered an aid -- books on tape. now, our kids can be mesmerized for btw 2 and 4 hours. we don't hear from them. also ibuprofen seems to help.
  14. pr40
    trader joes has the cheapest version of coconut oil that we could find. at 70 degrees it is not liquid. and, yes, we use it to replace butter, approximately one to one. this oil gives our muffins special aroma and smell, frankly, much better than regular muffins. we put it on bread and it it with jam. we also use it as substitute for other oils and fry with it.
  15. pr40
    one advice about CF. you got to do two things to go CF. First, throw out all the CF containing products and do not buy them again. Second, start using coconut products. It is easy to get used to and fat content makes it a great substitute for cow milk products. You can bake with it in place of butter. You can use coconut milk just like you use milk. The only thing that there is no substitute for is cheese, unfortunately. For many people, dairy is among the worst triggers. Do goodle search on dairy and mental illness
  16. pr40
    why don't you make a post with that question, who to see in VA? there are a few families in DC area that might be able to help you. NIH is in DC too
  17. pr40
    Risperdal is a schizophrenia drug, I just read. why not a standard protocol long term abx or IVIG? i am bit surprised that this was dr L's prescription for PANDAS. you may want to see someone else!? are there any positive effects of Risperdal? Lyme test you may want to do to figure out if that is a part of the problem. and I would do 23 and me the bigger part of gense not just MTFHR. If I were you, however, long term abx prescription would be my priority.
  18. pr40
    meat is a good source of fat and b-vitamins. I am not sure that I can recommend being a vegetarian when you have auto-immune issues. this would be a matter of health not of personal choice, philosophy, politics, and what not. also you may want to avoid relying on grains.
  19. pr40
    All of them. PANS is the PANDAS alternative when strep is not the trigger. the difference I am aware of is between other and lyme triggers. Some PANDAS drs are better at considering lyme than others. So, if you suspect lyme, you may want to do PANDAS dr as well as lyme specialist. another thing, you actually don't need a PANDAS dr to do a blood test about myco, lyme, other infections. any dr should be able to order it. there yet another thing, and that is, treatment. for most post-infections auto-immune conditions basic treatment is the same or similar, long term abx.
  20. pr40
    Rachel -- dd takes truecalm every day. no help as far as I can see. thanks for your response. we will ask dr to check neurotransmitters.
  21. pr40
    I did a search of this and other latitudes forums but there does not seem to be any talk about tyrosine, which is a dopamine precursor like L-dopa. i am thinking of trying it on dd10 because of her Restless Leg Syndrome (RLS). any experience?
  22. pr40
    dd10 is doing better than ever in the last two years. 10 days ago, however, her RLS started again and is worse than ever. I am giving her 5htp before bedtime, 50mg, which helps get her to sleep and it also diminishes RLS symptoms. But RLS wakes her up at night. We are now thinking about RLS medication and what to ask what had worked for you? DD does not seem to do well on SSRIs. in the past, we had RLS exacerbation that lasted usually less then a week. Normally, her RLS is there constantly but it is mild. any advice would be greatly appreciated. she takes iron daily and had high ferritin levels last time we checked
  23. pr40
    in my experience, the shorter and more precise the post, the better the response you are going to get. you may want to ask one question per post, like is this pandas, given the following symptoms? there are several authors on the forum from UK and Ireland. It will be easier for you to find them if, again, you make a post with that as your topic. best of luck
  24. pr40
    lack of sleep makes everything worse. our dd takes 1.5mg of melatonin which helps her fall asleep. you may want to experiment with other serotonin pathway medication like 5htp. in addition to looking for a PANDAs dr, you may want to start him on a diet, gluten and casein free might be helpful. fish oil, too. ibuprofen. Dr K is in Chicago.
  25. pr40
    exactly the same thing happened to us with Harvard Pilgrim in Boston. You can leave a message with dr, explain your situation. dr can, actually, be helpful to you if she/he wants, for instance, to refer you to your current dr. or, at least, speak with insurance about that. I would start with a message, some drs do try to be helpful.
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