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Everything posted by BeeRae22

  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:(
  16. Thanks everyone.... Especially the "regulars" llm- just curious-- which abx is your dd on? For dd's restricted eating we found that the addition of Minocycline to her cocktail made the most significant difference, and we started that on recommendation of several other's success with adding mino. As I'm sure you remember, my dd(now 10) was also in a dangerous position with weight, etc. -- I feel your pain raging, school refusal, etc. is incredibly difficult-- the stuff of living nightmares, but I'd have to say the restricted eating was the worst piece of it all around. And it's lonely- something no one could possibly understand unless they've lived it themselves firsthand. So I'm saying a prayer for you and yours <3 Dd was aggressive again tonight... I was able to handle her and get her to bed-- pretty impressed with myself I have to say. It's a bloody miracle that I'm not a raging alcoholic or something with everything going on in my life right now-- really! But lately I feel like I'm 1 step away from completely losing it life shouldn't be this hard.
  17. After nearly 3 years, I may have reached the point where I might break down and consider some sort of anxiety meds for dd10. We had a good run of about 5 months this spring where she was 99% back to baseline, and then we took her off Bactrim and she crashed. had a rough and bumpy summer, that finally ended in "more good than bad days", but never back to where she was in the spring. Fast forward to now, and it's fall. Non-pandas son caught a nasty cough/cold, I got it, then dd got it. Mild symptoms (congestion for me, cough for both kids and some sneezing/congestion) is still hanging on for all of us after a few weeks of it. Dd has been flaring-- aggression, rage (including hitting/kicking/attacking me) OCD, fears, anxiety, etc. aggression and raging most prevalent right now. I have resisted anxiety/psych meds this whole time-- even through the severely restricted eating, depression, raging, school refusal, etc. but I am nearing the end of my rope. I just don't think I can do this anymore. For those of you who've tried anxiety meds- what was your experience with them? Helpful? Harmful? My biggest fear is that once you go down the psych med road, it becomes almost impossible to turn back. I am not willing to try a bunch of different ones- I have always been very opposed to the idea because I consider it a bandaid and not a solution, but I'm reaching a point where I need some relief.... We just can't go on this way any more. I'm not going to make it.
  18. I posted at the beginning if summer about dd10- regressed after removal of Bactrim for the 3rd time. So here we are, mid summer- I had hoped to have her off of abx by now, and now we're back up to 3 abx cocktail again of zith, Bactrim & mino. So, we added the mino back in (had been off for over a year) and I'm not sure if its doing anything, or not? I am going to try removing it, but I don't know if I should-- dd is finally rounding the bend, but PANS is still there, humming under the surface. I think it's the Bactrim that's helping, but can't be sure of that either! Love our doctor, but I often feel as though I am taking the responsibility for the decisions regarding dd's treatment..... We could try this, we could add that, we could change this-- how am I supposed to know what to do? 2 1/2 years of heavy abx treatment now, and no end in sight how am I going to live with myself if there are consequences of the treatment when ultimately I am the one that has to make these decisions? Now that she's had such a tough time removing Bactrim again, I am terrified to take her off it again. Backing off of it again during the school year seems like a risky proposition, so am I looking at another whole year before I try again? What do you do when you're "hooked on abx"? Keep going and going? Anyone done any real research on long term abx affects? Something I should look into more, but regrettably I lost my ambition to research much about any of this some time ago... It's exhausting and seems to go in circles. Dd still not back to baseline like she was in May
  19. Thanks for your understanding... Last nights was particularly frustrated, and then reading the recent posts about Rogers also touches the nerve that maybe I shouldn't be keeping her on all these abx, and just bring her for CBT instead. But she clearly started struggling after we removed Bactrim. She is also taking zith. We successfully removed Minocycline (last year?) with no problems, but this is at least the 3rd time we tried removing Bactrim unsuccessfully. She had ZERO issues for about 5 months straight before this, and now she's having so much difficulty We didn't wean her off slowly, but if I ever get up the courage to try this again I think that's the way I'll go. It's just so frustrating and I get so worried when I think about all the meds she's been on for the past 2 1/2 years. And I'm going to mention the posts about Rogers again because one person mentioned that "even when their child gets a cold now, they see no behaviors" ie: their child is cured. So with that said, can a child be "conditioned" to have OCD behaviors when they have a cold, and it's not actually an autoimmune response, but solely a psychiatric one? I'm feeling so unsure about everything that I'm at the point where I'm questioning everything- especially myself. but when I think back to how severe she was, and how great she was doing just 2 months ago, and where she is now, I just find it hard to believe that this is "just psychiatric". I don't know, I go around and around about trying CBT again, but we did 5 months at Yale and that didnt do a bit of good. .... As an experienced pans/pandas mom (and I know it's all very individual) - do you think these kids have "residual" or "learned" behaviors, or are the flares an autoimmune response? Sorry if I'm talking in circles. Just....so....tired
  20. Shortly after removing Bactrim, dd started struggling... Excessive hand washing, fear of getting sick, complaining of not feeling well, etc. she was off for about 4 weeks. Now back on full dose for 2 weeks. I thought she was improving but she's not. Breathing tic (never had this before), skin picking again, doesn't want to do anything or go anywhere, failed play dates (calls to go home soon after being dropped off saying she doesn't feel good), some separation anxiety (from me) mild aggression (particularly when bored, but she doesn't want to do anything except go to dance, which she has M-Th evenings, so the long weekend is awful, and the summer classes are ending this week, so I don't know what I'm going to do with her after that). I am so down, frustrated and tired. I just don't know what to do any more. Usually around the 2 week mark we see improvement and I don't feel like I'm seeing any yet. I feel like nobody has any answers, I don't know what to do, and this summer which we have all been waiting for is just becoming a very long, drawn out mess. I'm seeking counceling for myself and can't find anything decent, and all day today I just wanted to get away from her which really makes me sad because I love her so much and have been waiting for the school year to end so I could spend more time with both of my kids. Why can't anyone help and fix this? I guess I don't really have a question here, just needed to vent. I also need to stay off of Facebook sites for pans/pandas, because if I read one more post of someone "offering hope" from someone who had their child on 10 days of abx and now they're fully recovered I'm going to loss it completely. I hate feeling this negative.... I'm just so tired of this, I really can't stand it!
  21. We have tried unsuccessfully to take dd10 off of Bactrim a few times and I'm considering pulsing abx. Any thoughts? Advantages? Disadvantages? Anyone recommend tapering off slowly vs. pulsing? Her doc has always been opposed to low doses of abx and I am inclined to follow his recommendations regarding that, but we have discussed pulsing. Any experiences?
  22. Thanks everyone. ... Dd is still struggling, although today wasn't as bad as the past few. Day 5 back on Bactrim and regular doses of Motrin... Appears to now have a breathing tic (past few days)-- this is completely new (never had much in the way of any obvious tics in the past- at least not this noticeable). The best way to describe it is that she "pauses" when she's breathing out. I asked her about it yesterday and she told me that she'd been "thinking about her breathing a lot". She doesn't have a cough, a sneeze, a cold, nothing. Still lethargic, sat on the couch all day, but she did go to dance class tonight with barely any resistance (past few days she resisted- anxiety about being sick) so there's some improvement. Becoming a little concerned about her appetite and eating (might just be me having flashbacks from her restricted eating which was severe at one time, for a long time) but she doesn't seem to be eating very much, and worries about getting sick. So that's the update. Not going to be too quick to pull that Bactrim again!
  23. MomwithOCDson, thanks for the encouragement.... I think I am particularly frustrated because I was in such awe just a month ago with how great she was doing-- she was truly returning to herself and it was an amazing, unbelievable feeling. The whole ordeal was actually starting to feel like a bad nightmare, like something that had happened to someone else, at a different time. It was a solid 4-5 months. No anxiety, no OCD. Zero aggression. Happy at school. Accepting "no". Sweet! Kind. Happy. This morning??? Quivering, anxious, unglued mess. Aggressive, hitting. Cheerios thrown all over the house. Game pieces thrown all over the house. Dilated pupils. Hurting the dog (picking at his nails). ANGRY. Refusal to go perform her dance which she LOVES. Cancelled play date.... Had to cancel ds's play date too.... Just seems so,,,, well.... Unfair. Pans has robbed so much from her, it's hard to have it take away even more. But thanks, I do appreciate the positive words, and am trying my hardest to hold on to the thought that its going to get better again. DCmom, thanks to you too I remember talking to you.... Dd is fully recovered from restricted eating, and I thank God for that. Raging, OCD, etc. are bad enough but having her not eat was pure ... Glad to hear things are better with you on that as well! Lw47- we (her doctor and I) have suspected Bart from the beginning, and have been treating based on symptoms, but the testing we did came up negative-- I can't afford Igenix, but am quite convinced that Bart is part of what's going on with her.... Every time we pull Bactrim she struggles. I'm surprised at the severity of her issues after doing so well though.... And why would she handle the flu completely fine, and become such a mess with just a cold? Because she had Bactrim on board then maybe? (I think that was in February?). There are so many variables, I often wonder how everyone seems so confident about what's going on with their kiddos. I can only assume my dd is struggling because of removing Bactrim, but is that really it?? Could it be? I just don't know.
  24. I haven't been on this forum in a very long time, but there are some who may remember me. October 2013 my dd "caught pans" and we were on a horrific long road to recovery. The past year has been good. Ups and downs, a few rough patches, but all in all pretty good. In fact, for several months (maybe 4 or 5) dd(now 10) was 99.9% back to baseline. Even had the flu and a fever for the first time since onset and made it through with NO issues. So, about 4 1/2 weeks ago we stopped Bactrim. Still on zith, s acetal glutathione and probiotics. Somewhere around this time dd, ds and I all got a cold.... Se was first, then ds, then me. She is fine now, ds and I still have a cough. Anyway, around the 1-1 1/2 week mark off Bactrim, dd started showing signs of increased anxiety, more frequent hand washing, more worries about getting sick, etc. these behaviors became worse and worse.... Complaining of not feeling well, stomach ache and headache. Missed most of the last week of school because her stomach hurt.... Stupid me, I thought she may have had a stomach bug or something- until she had a complete anxiety attack, including some aggression which she hasn't had in a long time, on her last day of school. I then realized that there wasn't anything wrong with her stomach, she's full-on flaring We've had difficulty taking her off of Bactrim before-- can't figure out why. She's been on zith the whole time too-- 2 1/2 years now. Just out her back on yesterday..... Here's hoping it works. Another panic/anxiety attack this morning- missed yet another fun event because she "doesn't feel well". Started pharma GABA drops yesterday-- I thought they were helping last night, but apparently not doing anything this morning dosing her with Motrin as well- doesnt seem to be helping. I am so VERY tired of all of this..... She was completely back to herself, and here we are again with anxiety, OCD, aggression, etc. I just can't even believe it. This is never going to be over, is it?
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