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Everything posted by NYCMom

  1. DS16 had a brief fear of spiders, now gone I think.
  2. I can confirm the abdominal and leg pain, but I can't tell you the reason. We assumed abdominal pain was from the antibiotics and leg pain coincided with puberty so we chalked it up to growing pains, but yes I could easily see it being PANS flair related. You have an inflamed brain at work here, mystery symptoms just seem to come with the territory.
  3. re: long term effects of abx: Our ped pointed us to the years of studies of long term prophylactic use in treating Syndenham's Chorea. I've never done the research into it myself (we trusted our ped) but he said there were no indications in the literature of long term negative effects and so he felt comfortable prepscribing prophylactics for his PANDAS patients. Our personal experience is that DS16 had occassional stomach issues, possible from the abx, not sure, but nothing that was anywhere near as bad as his flares, and nothing that has persisted in the years since he's been off them. We still give him probiotics to this day, so maybe that has mitigated some of the possible issues.
  4. Not at all. Our kid was a mild case, caught early, but on abx for years. To this day I'm glad we followed that protocol for as long as we did. DS16 is 100% most of the time but still has lingering tics with very mild flares to this day. Nothing that bothers him or gets in his way, so we've educated him about what he can do in a flare (eat well, take probiotics and an advil) and now let him manage it.
  5. Our DS(16) did the abx protocol for about 5 yrs (6-11 or 12). He greatly improved without needing abx once puberty hit (as predicted by his ped). His only side effect from the abx protocol was an occasional stomach ache. We mitigated with probiotics. He now just takes probiotics and sometimes advil when he has a headache. I suspect most of his headaches are PANDAS related. We are not a medication happy household, so I had the same reservations about prophylactics. However, when weighing the risk of tics and other behaviors becoming permanent, we decided it was worth a stomach ache or two. As he improved and puberty set in, we felt comfortable dropping the abx and dealing with flares with advil and probiotics. I can confirm that he was triggered by bacteria as well as viruses, so more PANS than PANDAS. This occurred even when on abx, tho to a lesser degree. I can also confirm the dental triggers, loose teeth def had an effect. We tried for years to alter his diet and insert supplements, but he's a very bull headed kid and with two other children it was difficult to enforce. Had he been a more severe case, I'm sure we would have been more vigilant. He is 100% most of the time. I see shadows of his hyper behavior and tics occasionally, but very mild and nothing that bothers him. No one else would notice if they didn’t know.
  6. If your current pediatrician is not open to exploring PANDAS, I would definitely start with someone on the list despite the reviews. Most neg reviews are about the timeliness of getting an appointment or getting a response to a concern or question. The most important thing is having a doc that believes in PANDAS, that cannot be overstated here. If nothing else, start by getting the appropriate tests either from a PANDAS friendly doc or your current doc, pandasnetwork.org has a list of immunology tests that are a good start for most. You can also try to convert your current pediatrician using the information on the pandasnetwork.org site. Some physicians are very open to the idea of PANDAS when presented with the wealth of medical research, which is only getting more and more robust as awareness increases.
  7. Yum Yum Dophilus is the favorite in our house. We tried Klaire labs, but it really all comes down to taste for our kid. He really likes Yum Yum.
  8. A couple of thoughts: 1. Antiobiotics treat more than just strep, so prophylactically will protect from other infections that could be triggers. 2. Those of us who have treated prophylatically, have also found anecdotally that the antibiotics seem to have a secondary effect of reducing inflammation.
  9. Hello and welcome. Our son (15yo) is/was also a mild case. He had some eye blinking as a toddler but nothing consistent or alarming. Classic PANDAS appeared at around 6yo after a strep infection. We had tons of symptoms (tics, hyperactivity, encopresis, night terrors, insomnia, emotional lability, etc.) but overall still a bright, functional kid and no school disruption. He was positively diagnosed using the Cunningham panel, which also showed him on the mild end of the population. Other than some minor diet changes, we only treated with prophylactic antibiotics and occasional ibuprofen. Tics are one of his more lasting symptoms (infrequent now, but he still does flare a little). He did have some stomach issues that could have been from the antibiotic use, so we would sometimes take breaks and address his gut health. He is a happy high school student now, straight A's, no current PANDAS treatments other than probiotics. His tics don't seem to bother him at all when he flares now and they are much milder as well. Steroids are the ‘big stick’ used to get brain inflammation down when ibuprofen is not effective.
  10. Yes we found that the antibiotics helped with daily symptoms as well as flares. Our DS contracted Lyme (we figured it out because of a flare) and was successfully treated (we hope). He still flares occassionally and we've stopped trying to figure out the sources. There are just too many and the info wouldn't really make a difference in our approach unless there was an active infection to tackle. Instead we double down on probiotics and lecture about clean eating.
  11. This is great. I look forward to more of these polls/mini investigations. I think we have such a wealth of untapped info here. Thank you!
  12. Yes encopresis (uncotrolled bowel movements) is common in PANS kids. Our doc thought it had something to do with constipation and gave us laxitives for it.
  13. As a former medical researcher I totally understand. Looking forward to the results and explanation, although you're going to need a lot more responses
  14. Would love to know the purpose or hypothesis behind the poll?
  15. Two thoughts: 1. Some of us have kids that flare in the presence of infections in others. So there's not necessarily a need for an active infection in your child for them to exhibit pans symptoms. 2. Some kids also appear asymptomatic even though there is an active infection. You just might not know it. AND to make it worse, some kids do not even test positive for an active infection.
  16. No, I haven't gotten that far. Just researching alternative therapies right now. I read "Stop the Thyroid Madness" and I've been altering my diet slowly, dropping goitrogens, taking ashwagandha, etc. I just bought a simple oral NES stick thermometer. I haven't testing it against anything else for accuracy but it seems to work fine.
  17. I'm doing the same thing! I researched thermometers for accuracy and picked a digital one (NES brand), so sorry no alternate recommendations. However, here's a good thyroid/adrenal chart to use: http://www.drrind.com/therapies/metabolic-temperature-graph There are downloadable chart files in there somewhere.
  18. I can only share our situation, but I'm pretty sure we're not unusual. You can see our course of treatment in my signature. Our ds13 has been on and off abx for years. He is currently off and only has minor flares now, mostly tics and some mild adhd behaviour. We're pretty sure his flares are due to the canary in a coal mine reaction to others around him having bacterial OR viral infections. When he's ticcy I usually find out that one of his classmates has strep. It's mild enough that we have been choosing not to treat, rather than mess with his stomach. We stick to trying to keep his diet clean (low sugar, refined foods, gluten, etc.) and trying to keep him a daily regime of probiotics (klaire, kefir). That being said, he's a teenager now so his habits are somewhat out of our hands. We just keep talking to him about making good choices and taking care of himself. There are a lot of different scenarios on this board. Some kids can't handle even mild exposure and flare really strongly when off abx. You have to be a good observer and gage your kid.
  19. Yum Yum Dophilius Klaire labs All kinds of Kefir
  20. Yes, very common. Immune system is distracted by an actual infection.
  21. I'm noticing a lot more postings of research articles and papers recently. I think this is a good sign that the medical community is starting to 'loosen up'. Here's one about narcolepsy but with lots of references to what we all talk about all the time on these boards... http://protomag.com/articles/betrayal-within
  22. Quite possible. Two things come to mind: 1. The idea has been bandied about here that abx also have an anti-inflammatory effect, similar to taking ibuprofen. 2. There is also the possibility that the abx are currently shielding her from some exposure to a bacteria or virus that will cause her to flare without actually contracting anything. I think this happens all the time to my kid, even when he's taking abx prophylactically.
  23. Try starting with the Heartfixer website. It's been recommended many times in this forum.
  24. Our DS is 12yrs, diagnosed with PANDAS (PANS) at 6yrs. He was on prophyl abx until a couple of years ago. DS was doing great so Dr gave us the go ahead to stop whenever we felt comfortable, so we did. That year he contracted Lyme and had a bout of strep that put us right back on abx, which he is still on today. He's a pretty mild case, we've never done any other treatments other than some sporadic Omegas, probiotics, etc. and some limiting of gluten and sugar. He currently flares every once in a while, is at 95% most of the time and 100% occasionally.
  25. Our son is very upfront about his PANDAS. If anyone asks about his tics he says "its a tic" explains PANDAS to them. We've tried to be very transparent with our kids and with those around us. It seems to be working out well, our son is extremely social and has no issues talking about his condition with kids or adults. You'd be surprised at how quickly people stop focusing on it once they're given an explanation.
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