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BeeRae22 last won the day on December 29 2016

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  1. 2+ years at baseline. Symptom free. Then bronchitis. Now... full blown Pans symptoms. Again. I don’t know that I can do this. Again. someone please help.
  2. Looking for feedback on peoples experience with neuropsych evaluations What do test results look like for Pandas/pans kids who do not have other diagnosis (such as autism)? How are the results written up? Do the neuropsych "symptoms "end up looking like behaviors as the result of the evaluation? Did you find the evaluation useful?
  3. Has anyone here worked with Pandas Hope for Healing and tried their regime of essential oils? I am hopeful, and much of what was discussed made a lot of sense, but would love to hear from somene who's tried it... Sounds like the initial purchase of oils is somewhat expensive, but in relation to what I'm spending on doctor visits and additional lab work I guess it's all relative. Despite the fact that I'm broke, I would spend everything I have left to get my child well again but I can't afford to chase false hopes either. Could essential oils really heal a hyper reactive immune system?
  4. Dd11 is flaring. Again. Even seeing some restricted eating which we've not seen AT ALL in close to 2 years... raging, aggression, increased anxiety (as opposed to her regular high level anxiety). I have no idea what her "trigger" might be... I noticed that particularly when she's flaring, she seems to crave chocolate and burnt food. Right now it's pancakes. When I say burnt, I don't mean dark brown, I mean BURNT beyond edible, for most of us. Anyone have any thoughts on what might make one crave chocolate and burnt food??? I get the chocolate part, trust me! But it seems like a flaring trend, and I'm wondering if I'm overlooking something?
  5. Looking for info on The Institute of Living in Hartford, CT. -- anyone?
  6. Looking for someone knowledgeable about glutamate and glutathione.... I'm wondering if I've finally made a connection in dd's treatment.... Spectracell results (maybe 2 years ago?) showed super low levels of glutathione.... Among the lowest levels seen by her doctor.... Just a few weeks ago, we finally tried the antiviral amantadine and we're seeing the most significant response to a med that I think we've ever seen. It's been mentioned, and I've read a little, that amantadine has an effect on glutamate....... Are glutamate and glutathione related? If so, in what way? There was a time (after receiving Spectracell results) that we supplemented with s-acetal glutathione, but from what I understand, glutathione isn't easily absorbed through supplimentation and since we weren't seeing much (or any) response, I stopped giving it to her when it ran out. Anyone have any helpful info??
  7. Agree with above... Keep a close eye on restricted eating too-- my dd had severely restricted eating, and we didn't figure out for quite some time (and x-rays, ultrasounds and an endoscopy later) that she wasn't eating due to severe OCD/fear of choking and swallowing, not because she wasn't hungry or because there was something wrong with her physically (in regard to eating). It escalated very quickly, to the point that she literally wasn't eating at all. It was terrifying. Best wishes...
  8. Did you check out the pandasnetwork site for treating physicians in your area? There is a link on this board too! I would take them to a pans/pandas doctor right away,,even if you have to go to great lengths to get to one....
  9. Dd is still doing great on amantadine-- seeing a huge shift in her, this is the biggest and quickest and most significant response to meds that I've ever seen in her in this amount of time. So, what were we missing before? If antiviral is working, what's causing the "viral load"? I'm not really understanding and want to know if there's anything I should be doing going forward? Things to watch for? Testing to consider??? I'm afraid to say it because I'm afraid to jinx it, but I feel like she's coming back finally- maybe more than she truly has in over 3 years?!?!?!!!! Anxiety is dissipating, OCD incredibly improved, irritability almost completely gone, kindness and empathy returning, appropriate responses to upsetting situations-- a completely different kid than she was 2 weeks ago!! Obviously I'll keep her on this and not even consider rocking that boat for quite some time, but what could amantadine be hitting that zith, Bactrim, mino, etc. weren't??? LLM, would love to have you chime in if you happen to see this!!!! Happy New Year all! --feeling hopeful for the first time in a long time! <3
  10. Confirmed strep and response to abx??? Sounds like you already know what to do.... Take her to a pans/pandas doctor and get her back on abx. I'm sorry you're dealing with this- it's incredibly difficult we are on year 3 of treatment this month and its been a horrible roller coaster, but there is hope and help if you look in the right places. Best wishes for a quick recovery.
  11. Dd11 was flaring- aggression, rage, OCD, etc. and we tried an antiviral- amantadine- for the first time and it actually seems to be working! Aggression and raging stopped right after beginning it and hasn't returned- it's been about a week now.... So here's the question- coincidence? Was the flare over anyway? Or is it actually working?? Keep her on it? Take her off and see what happens? I haven't researched antivirals much (we've never tried one, so all my experience has been with abx), she still on zith and Bactrim as well.... What does it mean when/if an antiviral does something?? What should I be thinking about going forward?
  12. Dropping in without having read the above posts, but my dd complained of stomach aches for at least a year, maybe a year and a half before onset of severe "initial" exacerbation. Ironically, the stomach aches stopped when all of the other symptoms kicked in! We suspect Bartonella in her, in addition to myco p, and her doctor (llmd) tells us that stomach aches are probably the #1 complaint/symptom of children with Lyme. We also ended up doing barium swallow, ultrasound and finally an endoscopy-- "nothing wrong".
  13. Thanks llm somehow I was counting on you to respond! Did you start Naltrexone on our doc-in-common's recommendation? I haven't had a chance to research it yet, so thanks for the links. Dd has had 3 doses so far, and while I hate to say it out loud, I can almost say that I think I may be seeing a "shift" in her. She had circumstances this morning that (given her condition over the past week) should've set her off, but she was fine. Seems and looks tired, but is agreeable... So far. Can't wait to learn more.
  14. Anyone have any experience with either Notatum or Naltrexone???? We've started both.... I think the Notatum caused dd's flare to worsen, and may be seeng a "shift" in her with Naltrexone but its too soon to tell.... I'd never heard of either before, so I'd love some feedback
  15. My dd(10) has been on zith & Bactrim for what seems like forever... It certainly wasn't a quick fix, but after months of severely restricted eating, she actually ATE 48 hours after adding Mino.... While the recovery was a long process after that "first meal" in a long time, (it took about a year after that to really recover with the eating piece) there was no doubt in my mind that adding mino made a significant difference. She was probably taking it for 1 1/2 years before we took her off? Luckily, no side effects. I have also gotten very good about not getting "sucked in" to dd's rage episodes.... My patience sometimes is amazing, even to myself. or probably I'm just too tired to get into it with her anymore... I am very calm, and I wait. She attacks me and I get her down to the ground and calmly tell her that I'm getting "THE medicine" (Xanax, which she is terrified of) and hold her down until she burns herself out. I have actually only given it to her 2x ever. Once, about 1 1/2 years ago? And the other-- 3 days ago. Interestingly enough, when she knew I meant business about giving it to her, she actually took it herself.... Which is very strange. She has been TERRIFIED of taking that since the 1 time she had it (full dose knocked her for a loop! I actually watched her eyes roll back in her head-- it was a little scary! I only have her a fraction of that dose this time!).... Not sure what to make of her willingly taking it? Well, after all of this, I'm off the idea of psych meds. I want the quick fix but I know it isn't the right choice for us. Just feeling desperate lately I guess... Being where we are now, with this month being 3 years since onset, makes me feel like this is never ending. I know she'll get better again, it's just wearing me down:(
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