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Hayley

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  1. my dd8 just had depression on Rifampin to treat strep. She was otherwise totally PANDAS symptom free so the bouts of depression (a couple of hours starting about an hour after each dose she would get totally withdrawn and cry hysterically. couldn't articulate what was wrong) were very notable. She had been on Rifampin previously and we didn't recall a reaction, but she was in a mild flare back then so it's possible we just felt like it was part of the flare and didn't focus so much on it. While we weren't sure, we took her off (switched to Bactrim) and she hasn't had any repeated depression since so we are thinking it was, indeed, a side effect.
  2. Thanks, all! PR40, I asked about frequent urination, other aches and pains, eating changes, sensory issues, fears, all the others from the traditional list and it's just the tics (I didn't consider two different tics two separate symptoms, but one symptom that is getting worse/multiplying) and possibly sleep though the sleep is one of those, might be related or might just be a 4.5 year old in a case where mom has been travelling, big schedule changes with new MUCH longer days of school, etc. The family isn't dismissing that as a symptom at all, but is watching. This is a family very close to ours who has seen my daughter's experience close-up, does get it and is really freaking out about all this. She's just trying to figure out how alarmed she should be...and whether treating the strep aggressively with abx might stop whatever is going on in its tracks. I think if the tics don't remit soon she will probably make an appointment with Dr. L who is local here. Appreciate all the feedback and will pass it along! Thanks again. Hayley
  3. Hi all! I have a friend whose son (4.5 years old) started with an eye blinking tic. She took him for a strep test and it came back positive. He's being treated with antibiotics (doctor is not talking PANDAS at this point, but said "sometimes kids get a tic with strep) which seemed to have diminished the tic initially, but then it returned to as bad as it had been (before finishing the abx protocol). He finished the abx last Thursday, Friday a second tic began (throat clearing). He's not sleeping well, but behaviorally seems ok and doesn't have any other obvious PANDAS symptoms. The doctor wouldn't retest for strep until he's 48 hours past the end of the antibiotic so they haven't done that yet, but will. Meantime, I was hoping this group could answer a couple of questions: 1) Anyone out there have a child with JUST tics? 2) if so, did they stop immediately after the strep was eradicated? If not, how long did it take? 3) Any thoughts on this: if strep induces tics and no other symptoms, do you treat like PANDAS or is this just strep induced tics and no big deal? Thanks so much for any feedback! Hayley
  4. There is a new "awareness day" issue of the pandasnetwork.org newsletter out with some great info on upcoming resources on awareness building, Swedo's upcoming talk at the AAP and other tidbits... If you don't already get the newsletter, I recommend you login to www.pandasnetwork.org and sign up to get this and other updates from the organization. Meantime, here's a link to the newsletter if anyone is interested: http://campaign.r20.constantcontact.com/render?ca=d8c9ae00-889b-4d81-966a-2c018f4cefa6&c=b15491f0-207c-11e3-8210-d4ae52753a3b&ch=b19e1e10-207c-11e3-8290-d4ae52753a3b
  5. Nancy, I had the same reaction with a little red flag going up, but I admit I'm intrigued. I may go to the woman's office to learn more and will report back if it seems promising and/or certainly if we move ahead with it. I haven't done CST with my PANDAS daughter, but did do it with my older daughter when she was having recurring ear infections WITH ear tubes in. She had been getting back to back infections and after four sessions with the osteopath who did the CST, she never got another ear infection (actually, one, five years later!). I've thought about taking my PANDAS daughter to do the CST, but have been trying not to throw too much out there at once. If she doesn't hold her progress, I would consider it to boost her immune system.
  6. Has anyone out there ever heard of or tried BIE treatment for their PANDAS child? I just spoke to a naturopath who is certified in this. She never heard of PANDAS, but has used it to treat autoimmune reactions in general and other intolerance. Would love any feedback from those familiar. Thanks!
  7. bigmighty, Our doctor who recommended this is Dr. L so she definitely knows her stuff. Just curious how others had done with it. Thanks.
  8. My DD7 (almost 8) had HD IVIG (2g/k over two days) back in early December and recovered beautifully. By about late January she hit a point where we considered her 100% herself 98% of the time. She got strep in May and got through that pretty unscathed then again in late July and this time, she has had some backsliding. Nothing remotely like what we had experienced last summer at onset, but definitely something a bit off (just in time to start school... UGH!). I'd say on a scale of 1-10 in terms of symptoms if she was a 10 at her worst she's still only maybe a 1 or 2 now, but we can see she's not herself. She had some bloodwork several weeks ago and we see that her IgG levels are very low (total 409; subclass 1, 253, subclass 2, 105. At their lowest documented last september she had total igg of just 392). The doctor is suggesting doing 1g/k ivig pretty immediately then monthly ivig at .5/k to keep her immune system up through the school year. We trust our doctor implicitly, but are nervous because she's been SO good for the past six months and she's not awful now, we hate to rock the boat. Of course we also don't want her to get worse. I would be interested in feedback from others who have done this or similar protocol. Thanks so much! Hayley
  9. my DD NEVER in her life cultured positive until this May (when she got strep on Augmentin) and then again last month (when she got it while on Omnicef). First time she had a rash, but no symptoms (she'd been at a point where we called her 100% about 98% of the time -- the exception being little "blips" about once a month); Second time she woke up with anxiety and said her underwear felt wet (a telltale sign of hers we hadn't seen since she was at her worst) and her throat hurt). When she got strep on Augmentin they switched her to Omnicef and that kicked it. When she got it on Omnicef they switched her to Rifampin which worked as well.
  10. My dd had Coxsackie the week after her symptoms went through the roof last summer (mouth sores only. No other symptoms). Tested a couple of months later, her numbers were high for four strains of type A Coxsackie ranging from 1:800 to 1:1600. (strep ##s were high as well, but not super high) She was never treated with any antivirals during the bout with Coxsackie or after and the visible coxsackie symptoms disappeared on their own in a few days. Antibiotics (to some degree) then IVIG ultimately got her back. I don't believe that her coxsackie numbers were tested again until after the IVIG (at which point they were negative) so I can't be sure if her antibodies were still in fighting mode on the coxsackie front up until then.
  11. I use the oil from omega cure: http://www.omega3innovations.com/, It has no taste or scent. We tried the cookies and chocolates, but kids all thought they taste gross so we are back to mixing the oil into yogurt!
  12. I don't know about the protocol in the study, but my daughter was originally put on 5 days on 5 days off Azith. last August. We saw only very modest improvement in any event and definitely backsliding on the days off. We had reached out to folks on this forum and got a lot of feedback that this does NOT work for PANDAS kids. We talked our pediatrician into giving us daily dose until we could get into Dr. T & Dr. L and with that we saw less up and down, but still only modest improvement. In our case we didn't see real results until we got her on Augmentin so it's possible that the 5 day on, 5 off wasn't as much a factor as Azith just not being the right abx for us.
  13. We are also in the DC Metro area (Maryland side). My daughter saw results with augmentin. HOWEVER, she just got a break through strep infection while on a full daily dose of augmentin so there might currently be something floating around here these days that is augmentin resistant (at least in our community). Omnicef (clindamycin) cleared up that strep quickly. Back to original onset, we had tried several other options before getting to the right dose of augmentin (Dr. L got the dose right. Prior to that we were going with our pediatrician who was supportive but not experienced with PANDAS and another local neurologist who was not at all helpful). With the first couple of options we tried, we saw very minor changes, but within 48 hours of the augmentin at a full dose (450 mg 2x/day for our 54 lb 7 year old) we saw a notable reduction in symptoms (she didn't have tics, but the big change was in emotional lability/rage). Have you started the abx? Any change at all?
  14. I would maybe get your 18 yo cultured at least. We just had a wacky strep in our house that reinforced how sneaky it can be...DD7 (PANDAS) had a rash, but no other symptoms, cultured positive for strep (despite being on full dose augmentin); tested my other kids (no symptoms AT ALL) just in case and one came back positive on the culture. I am guessing someone had (and possibly still has) strep in your house. Did your 7 yo's rash go away on its own? Did you culture anyone else? Maybe he did have strep and somehow his body fought it on its own, but your older son or someone else caught it and that's what's lingering?
  15. That's a great idea, norcalmom. I don't know much about how it's run though. Don't you set up a platform and then kickstarter is a vehicle for getting funding for some kind of media production? I may be misunderstanding the format, but if that's how it works, I don't know if it's viable though at this point since just getting the core projects funded is the priority. I feel strongly that if our community could come together and build the resources of PANDAS Network-- through small gifts, grassroots efforts, etc. -- the actions of the organization would, by design, raise visibility and ultimately position them for more fundraising. A PSA type thing could come down the line, but first there needs to be some donor base supporting general operations. I may be misunderstanding how kickstarter works, however. Or maybe you are talking more generally about using this for awareness of PANDAS overall which definitely has potential.
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