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Hayley

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Everything posted by Hayley

  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symptom free so the bouts of depression (a couple of hours starting about an hour after each dose she would get totally withdrawn and cry hysterically.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.
  16. Thanks, Pow Pow! I sent you a PM.
  17. Great post LLM. I have professional experience in fundraising and organizing and have felt, since my daughter was diagnosed, so anxious to see the energy from this forum channeled into the organized action we all need and want so much. I hope this isn't against forum rules, but I am compelled to take this opportunity to give one particular organization a little plug (given all they've done for me and especially since Miss Mom asked for recommendations of groups that could use help!). I have actually been doing some volunteer work with PANDAS Network (www.pandasnetwork.org) and have truly been so impressed by their work in every way. This endorsement of PANDAS Network is in no way meant to slight any other organization/individual out there... I know there are others doing great work and I deeply appreciate all efforts on behalf of our kids. I'm just sharing what I know of this one very worthy organization. From what I can gather, PANDAS Network is the most long-established PANDAS/PANS nonprofit organization we have as a community with strong visibility and a great track record and well positioned to be a launchpad for a bigger movement. As most people on this forum, I found www.pandasnetwork.org early on in my research and benefitted consistently from a ton of information they provide. The fact that the group's name comes up so consistently on this boards shows how well utilized it is as a resource. For those who don't know, PANDAS Network is a 501c3 nonprofit that was started by a parent, Diana Pohlman, who, like all of us, just wanted to help find answers for her kids. While it continues to be run exclusively by volunteers it is backed by a very impressive scientific board, has big players (Swedo and Latimer) on it's Board of Directors and is a part of the NIMH partnership program. Among other projects, they are in the process of completing a national survey to document PANDAS cases; they were involved in a private PANDAS meeting at Stanford just last month (and plan to release more info on that when they can); and have a newsletter coming out shortly. PANDASnetwork.org is a go-to organization not only for parents, but also for members of the media and others who want information. When they respond it is always with input from members of the scientific advisory board so there is no doubt that the information is fact-based and credible. They are doing a ton of work, but are limited by the fact that they currently do not have the resources to operate as a staffed organization. All of their achievements , all the resources on their website, all the time and energy they devote to helping families...everything has been done by volunteers who squeeze in this work around other jobs and family commitments including managing their own PANDAS kids. It's amazing what they have gotten done under these circumstances and incredible to think about what they could do with adequate resources. PANDAS Network recently did some strategic planning and developed a business plan laying out programmatic goals (research, education, family supports, etc.). The plan also lays out strategy for building infrastructure (e.g., staffing up and, to that end, fundraising) acknowledging that this is absolutely critical to realizing the programmatic goals. I think that as an organization run by parents, and recognizing how much all of our families have been through, PANDAS Network.org has operated with a sensitivity, trying to always give to this community and not ask aggressively for anything in return. However, they ARE a nonprofit and if they are to achieve their potential as an organization, they really do need financial (and other) support. If you have used their resources and/or value their role, I encourage you to think about ways you might contribute whether it is a small (or large ) financial contribution (and remember many employers will match your personal gift to a nonprofit), organizing a little fundraiser in your community (restaurants, gyms, schools often have things set up where you can easily arrange a charity night where some percentage of proceeds go to a nonprofit), asking friends or family to make donations in lieu of birthday or holiday gifs..... There are lots of ways to contribute even if the demands of this disorder make it difficult for you to write a check yourself. And if anyone is in the DC area and wants to join forces to do some fundraising/awareness building for PANDAS Network, please feel free to PM me. A friend and I have been tossing around some ideas and we hope do put something together soon.... And to so many of you who are already giving time, energy, money, ideas, etc. to help our kids as a group...THANK YOU!
  18. We did not get back to baseline with antibiotics alone, but did with IVIG (high dose one time). We're now almost six months post IVIG and seemed to have gotten through strep and a fever virus ok. She is, however, still on full dose abx and will be for some time. We switched the abx from augmentin to omnicef when she got strep. I think the plan is to switch back after 30 days.
  19. Hi Pow Pow, I tried PMing you, but your mailbox said you couldn't get any additional messages. I wasn't the one looking originally, but would love the name of the integrative doctor in Fairfax. I've been lamenting that there isn't one in closer to where we live (DC maryland suburbs). Still wish there were one right here, but Fairfax isn't too far so I think maybe worth the trip. If you could PM me, I'd appreciate it. Thanks!! Hayley
  20. We did IVIG for DD7 and are so happy we did. She had gotten a lot better on antibiotics (I thought at the time 75-80% back to herself, but in hindsight, she was still acting pretty wacky and suffering a lot, just not having so many rages and generally functioning better from the outside so it felt eons ahead of where she was at her worst),but would get sick with even a little fever virus and regress. It has been about 5.5 months since the IVIG and she is great. She remains on full strength antibiotics. At about 6 weeks post IVIG she really turned all the PANDAS behavior around. About 2 months out, she really came back to her old self (in some ways better than she had been for years). I'd say for several months she was 100% her old self 98% of the time, the exception being little "blips" about every two weeks or so that then spread to maybe once a month (these would last only about an hour or two and were nothing like what we had seen earlier, just hints of anxiety). In the past month she got a terrible fever virus and strep, both of which she came through with just the slightest of challenges (the fever virus, no regression. Strep, nothing anyone would notice, but her eyes looked very flat to me so I felt like she was off. Since getting past the strep, we learned her sister has it too and DD reacted slightly to that exposure this week, but just very slightly and she seems to have bounced back. I credit the IVIG for strengthening her system to manage these illnesses. I don't know if it will last forever, but the results were tremendous -- gave us back our girl! I would do it again in a heartbeat if necessary soon or down the road. I do not think she could have accomplished these gains on abx alone.
  21. We may or may not. DD's numbers are consistent with CVID, but her clinical presentation is not. We have, so far, done a single dose of IVIG (high dose) and that got her back to 100% in terms of PANDAS behaviors/symptoms. We are watching and waiting to see if it holds. We're currently 5.5 months post-IVIG. Should be doing bloodwork early summer to see what her IgG/IgA numbers look like as the IVIG moves out of her system (we tested in January and again in March. January ##s were high as expected based on the IVIG. The numbers dropped by March, but not to the low low levels they were at prior to IVIG).
  22. Well...it's strep. Cannot believe it. She's been on full dose of augmentin since September. Hasn't missed a dose in months. No fever, no sore throat. Nothing... Doctor switched her to Omnicef so I guess now we just watch and wait. Wish us luck everyone!
  23. I'm pleased to report my daughter has been doing great. Monday was five months post IVIG and she continues to be back to 100% her old self. She made it through a fever virus two weeks ago that lasted five long days without any increase in symptoms. Had a little anxiety early in the morning last Saturday when she lost a tooth, but returned to baseline within the day. Yesterday I noticed a rash all over her back. Small raised bumps. She wasn't complaining about it yesterday, but today seems to be. I can't trace it to any changes in detergent, new foods, meds, etc. No change in behavior to note (although she was VERY hyper yesterday afterschool -- agreeable, but hyper). Could this be something PANDAS/autoimmune related? Anything I should be looking for??
  24. We did 2g/kilo once with no subsequent. That was five months ago. It was completely transformational. I'd say she really hit 100% recovery around two months after the IVIG. Is the plan for subsequent IVIG set in stone or is it an "as needed" type thing? I'm no doctor, but it would seem to me that if your child is on a good path with the single dose, it might be premature to do another (at any dose) at two months.
  25. We used it for a short run (maybe 10 days) for my son when he was a toddler (maybe 2). it was prescribed for an ear infection. He tolerated it fine.
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