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Everything posted by ssfkat

  1. My daughter's bw just came back high in this, so I've been reading lots of pages about it. If you're talking about IgM, I *think* I just read somewhere that the half-life is about 5 days, so I am guessing in a normal situation, it should begin to go down relatively quickly. Just reading though....still sifting thru info...
  2. The first few days were basically us being shell-shocked and not knowing what was going on, before we got used to our "new normal". After about 3 days of that, we finally corralled her enough to get some clothes on her and put her in the car seat to get her to the ped. She was spewing every vile thing she could imagine at us the whole time. Totally not our child. We asked for a strep test and it came back negative. The ped wasn't very supportive anyway, and called PANDAS "controversial". He suggested zoloft (she was 3yo at the time) and I refused. Then he suggested that she was "testing
  3. Sensory issues were the first things that showed themselves. Literally overnight, one day she woke up and did not want to wear any clothes. Everything made her scream. We were housebound with her in the bare mininum clothes for those first few days. The sensory things have morphed and mutated over the years, but they are always, always there... in various forms.....since that day.
  4. Wow, the fact that multiple test sources can yield different results is news to me. Thanks for the heads up. What herbal tx are you using?
  5. I just discovered that DD's probiotic, KIaire Labs' Ther-Biotic Complete Powder, has streptococcus thermophilus which Klaire says does not affect PANDAS/PANS: http://www.klaire.com/images/PANDAS.pdf. But I see that some practitioners advise against it. I am curious about any recent thoughts about this?? DD has been on this supplement every single day for YEARS, as in I can't remember when I put her on it, and she's 9yo. It's the only supp I have never discontinued.
  6. We have done the bloodwork, and are waiting for the dr. consult. We were given 2 different abx, as well as a Valtrex to take in the interim, but none of them seemed to do any good, at least for the 30 days each abx was taken. However, ibuprofen works. 90% of the time, a dose calms her down, to the point where when she is flaring badly, we make a beeline for the bottle. I get that it reduces inflammation. Does the infection in the brain cause the inflammation, or could theoretically anything cause inflammation in the brain -- like an infection or a virus. Or let's say she t
  7. So, along with the line of reasoning in this article, manganese in a supplement should possibly be avoided for someone who has Lyme?
  8. http://www.ctvnews.ca/video?clipId=551311&playlistId=1.2235664&binId=1.811589&playlistPageNum=1&binPageNum=1&hootPostID=ec940f3c5e0e1cb36ec058e75da50411 This features Beth Malony, author of "Saving Sammy". Great interviews with mothers of PANDAS kids. My only concern is that the general medical community is just now scratching the surface of the strep connection, but it seems that strep is just the tip of the iceberg, and so many other things can cause neurological problems, hence PANS is more encompassing. Still, it's a start.
  9. So glad you had a positive experience. More doctors are coming around .
  10. So did your daughter have Bartonella? I was just reading up on it and we have had dogs in the house since DD's birth. Is it more prevalent in certain parts of the US? I just read an article on it from NC and we spend a lot of time there, visiting family. She has also had several tick bites, and deer ticks are prevalent where we live. We have done prophylactic abx treatment for the ones that we have found, but there could have been others that we didn't see. It's like finding a needle in a haystack!
  11. That is great news. We just had bloodwork done (before insurance, $2,200+ worth! gulp). I will call tomorrow. Thanks for the heads up!
  12. I was wondering -- for those with younger children, what do you tell them about their "issues"? We have started the abx and often ibuprofen, and DD keeps asking what they are for. She is used to taking all kinds of supplements, and we have been telling her the abx are new supplements, but she knows what ibuprofen is. She is 8. I told her that, just in case there is something in her body that hurts that she may not know about, and that may be causing her to feel bad/act out, we are trying the ibuprofen. But like most kids in this category, she is pretty sharp, and eventually w
  13. Hello all and thanks for the replies. As it turns out, others' schedules dictate that the overnight stay is not an option. So, it's now a day-trip which takes the pressure off, AND DH is now able to go since it will be a day before he leaves. So she will get the association and fun without the added stress. dasu, the only definite triggers we have are food-related so far. For example, she was fine for about a week, and we let her have mustard, and within hours she was a pistol, and stayed that way for days. She absolutely loves mustard, and when we had her tested for food allergies
  14. (apologies to the Clash ) Ok, I wanted to get the opinion of those here since most parents don't understand this dilemma. In a nutshell, we have the opportunity to go to the beach for a night with a group of friends, one of whom has a house at the beach. DH cannot go because he will be out of town. I rely on him heavily to manage flares with DD. She has been really really bad for a while now and we can't trace it. She is on abx and we sometimes give her ibuprofen which helps, but not always,. We have to plan it 2 weeks in advance, and we both know that at any time, sh
  15. I am so glad that this has worked for you and very glad you posted. Before embarking on the pharmaceutical route, we tried every natural path under the sun, including 2 nationally-recognized, published homeopaths. Both were very promising in the beginning, and more than eager to take us on, but in the end, proved ineffective in helping our daughter. We simply don't have the out-of-pocket money to keep finding the "right" homeopath for her. That being said, I know it is very helpful for some folks, and if you have the $$, it's worth investigating to see if you're one of those folks!
  16. dasu, best response I've read. Setting limits and accountability do not work during a flare/reaction. DD already knows her limits and accountability. How do I know? Because when she is not flaring, she behaves with a recognition of her limits and accountability ... and is actually quite well-behaved. At those times, I feel like a great parent. But when the switch flips, all of that changes. She becomes almost animalistic and, although I know what is happening, I still cannot help feeling like the lousiest parent. Still, the rest of the world does not deserve to be subject to he
  17. During our 5-year journey, the one thing I have consistently noticed is the effect of various foods on DD's behavior resulting in reactions/flares. The Feingold diet was helpful for a while until it became almost impossible to keep up with, as well as obviously not being a "cure". We had her tested for food allergies and mustard came up high on the list. We have avoided it for a while, and tried it again this past weekend. Within hours, she was a different child -- huge flare. SO....how does this fit with PANS/PANDAS? We also notice an improvement with her on antibiotics as we
  18. Okay, thanks. We're fairly new to the pharmaceutical world, having tried the "natural" approach for several years to no avail. Just wanted some kind of feedback that this wasn't overdosing her system somehow... thanks
  19. I don't know if it's still like this, but when I was considering it, the products didn't have a list of official ingredients per product nor Nutritional Facts. And I couldn't get a straight answer from anybody about what exactly was in each product and the proportion of each ingredient...
  20. Bloodwork is incomplete, but in the interim, our dr. has prescribed the following antibiotics to be taken concurrently. Does this seem like a typical regime to start with? It seems to me it might be better to do one drug at a time to gauge whether it works?? Any thoughts?? Our daughter is 60 lbs. Augmentin tabs 500mg, 1/day Biaxin tabs 250mg, 1/day Valtrex tabs 500mg, 1/day for 10 days
  21. I looked into this online program briefly, but ended up not pursuing it. They are a very flexible school and cater to the needs of the child. It is home-based: http://www.clonlara.org/
  22. All very interesting...In some respects, I'm glad there's a connection -- it shows we're on the right track in finding the needle in the haystack with what the problem is....
  23. And if we are dealing with an infection in the brain, doesn't fever fight infection? Bumping for more responses...
  24. Every time my daughter gets a fever for any reason, or has a cold, her behavior improves. She is calmer and more agreeable and her tantrums decrease noticeably. She is not currently on any meds, as we are still working with the dr. to try to get testing done, etc. What would cause improvement in behavior??
  25. I should probably do that (keep calling). I am so deeply in the information-gathering stage and will probably begin that in earnest very soon. She is on 1000mg of fish oil, and oddly she seems to calm down when she's had a lot of garlic (She loves garlic and has a garlic sauce she likes on things...ewww!) We have not tried CBT -- thanks for the suggestion. After 5 years of being determined to solve this thru natural means, then going thru a phase where we just figured she "would grow out of it" and sticking our heads in the sand, I am finally getting the nerve to try to ta
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