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  1. Yesterday
  2. lulu648

    Touretic OCD

    Thank you! Is your son still having success?
  3. Last week
  4. kos_mom

    Touretic OCD

    This term was coined by Dr. Charles Mansueto, a psychologist who runs a center for treating OCD in Silver Spring Maryland. Here is a link to his first published article on it (this is the pre-publication version). My son is one of the case studies presented. http://www.behaviortherapycenter.com/tourettic-ocd
  5. Chinese cupping is also used for detox, and there are other detox herbal & juice remedies and treatments available. Drinking warm fresh lemon juice water is one of the simplest (hot water with juice of a small lemon or 1/2 large one) Add a spoon or 2 of honey if needed, but plain is best imo
  6. Chemar

    L-Glutamine for Children

    Just a quick reminder that antibiotics are not considered a standard treatment for all kids who have tics. They are specifically used for kids who have tics related to PANS/PANDAS
  7. maryangela

    Need Help

    The first time he was put on antibiotics for PANDAS, he had a liquid, and I’m not positive of the dose, but remember it was 3x daily...I believe the equivalent of 500 mg 3x daily. It was not the XR. The following 18 months, we had some success on & off with antibiotics...Augmentin (875 mg 2x daily) and Clarithmycin. He started monthly HD IVIG recently. So far he’s been getting about 90% better after IVIG, but starts tapering off after 24 days. He has another IVIG this Sunday / Monday. Hoping the results are lasting this time...at least until the following one. Again, he was almost symptom free for over 3 weeks immediately following the last IVIG.
  8. newfie

    Need Help

    Hi Mary Angela, Thank you for your response.How is your son doing now?I was just wondering what dose of augmentin did he take that was effective and also was it augmentin xr or just the regular one.My sons psychiatrist gave me a 30 day prescription of azithromycin to try ,after 17 days I did see a decline in his tics,no change in ocd then he got a cold and tics returned .His pediatrician and psychiatrist refuse to give him anything else other than Prozac which he currently takes 40 mg.I am waiting for a referral to see an infection control specialist and a neurologist but I’m not hopeful they will do anything for him.My husband wants to take him to the states and see a specialist there but I want to hold off and see if we can get some sort of treatment closer to home and less expensive.
  9. mlee

    L-Glutamine for Children

    How long was your son on high dose antibiotics?
  10. Any detox ideas other than epsom salt baths? My son reacts to the sulphur.
  11. Thanks for your support. Had the pedi visit today. They gave him a physical, looked at a video I took, took bloods to test for Lyme and referred us to a pediatric neurologist. That appt will be on August first. At least we know that he is in no immediate danger. The pedi encouraged us to continue with our summer plans, so Jake will be spending a week with the grandparents. It will be good for him to have some time just being loved and occupied instead of me stalking him all the time to check his tics!
  12. californiafamily

    PANS/PANDAS Immunologist

    Does anyone have a recommendation for a good PANS/PANDAS immunologist? We are on the West Coast but willing to go anywhere. We can't get to Stanford because we live outside the 90 mile radius requirement to see them. Thanks.
  13. DD (5yo) has been struggling with PANDAS for 1.5 years. Tested positive for Group A strep at first onset, but never again. Has tested positive several times for non-group A, however, often coinciding with a flare. Pediatrician, who tries to help but is a bit of a PANDAS skeptic, says that this kind of strep is just colonized in some people and that it doesn’t cause illness and doesn’t need to be treated. Dr. L has not been responding to my calls and emails. Not sure what I should do. Has anyone else dealt with non- group A strep in their PANDAS child? I’m wondering if a tonsillectomy is necessary.
  14. Hi Sarah, I agree with everything that Sheila stated in her post. Certain foods in my son's diet, particularly gluten, really seemed (still seems at the age of 14) to trigger his tics. The cleaner the diet, the better! Reduction of stress, plenty of sleep, and for our son, making sure he doesn't go too long without eating all seem to help him maintain homeostasis and have less ticcing. At the first sign at some unusual hand twisting at unusual times, I brought my 4 year old into our pediatrician who stated that he was fine. I was pretty firm in asking for a pediatric neurologist appointment even though there didn't seem to be a cause for alarm on the doctor's part . I am happy that we did, and even though my son is no longer on meds, his neurologist is a huge part of his life and a person who just really gets him and what it's like to grow up with TS. Also, if you have the resources to see a homeopathic doctor who can do more in depth testing (if you can find one who is also an MD), that is also beneficial. This was helpful as we could see where he had mineral deficits and also which foods he has sensitivities towards and to avoid them. You can also do this with an elimination diet if this is not an option for you. Other avenues we have pursued over the years are chiropractic care, occupational therapy, and biofeedback. I think to some degree, these all helped our son. Know you are not alone in this journey. We all understand the initial stages as you manage this with you son. Eve
  15. Thanks so much for your quick and thoughtful reply. We live just north of nyc. Jake has had basic allergy testing and is allergic to dust mites. We try to keep the house, especially his room, dusted, washed and vacuumed regularly. I just ordered a HEPA filter. Summer is such a difficult time to get diet under control. Jake is supposed to go visit his grandparents in two days and it is hard to limit the spoilage, especially since we won't be there. Something interesting is that we are a soda free family except on trips. Jake had a bunch of orange fanta at the beginning of our trip just when the tics began. I will definitely request that the grandparents keep his diet as healthy and unprocessed as possible. What do you think of the ten days of amoxicillin? Do you think that that is sufficient to rule out a bacterial infection? Is it something I should pursue further? I really appreciate your help. Sarah
  16. Hi Sarah, Welcome to the forums. I know it is hard to watch your boy tic, and hopefully it will resolve very soon. It is such a feeling of being out of control as a parent. But you sound like the kind of mom who will be able to find answers. It sounds like you have a lot going on related to the travel. Where do you live? In addition to whatever your pediatrician wants to do , you could ask for a referral to an allergist. As for what to request or questions, lot depends on the mindset of your pediatrician. Some take the approach that tics come and go, and it has been a short time (aside from the snorting) and "they will probably go away on their own." Others, and this is the small minority, will help you explore other approaches. Had the doctor done a strep test? Let us know what next step is recommended re: the antibiotic. Try to get on a strict diet right away, avoiding sugars and artificial additives. Reduce screen time, keep the house cool since heat may aggravate him (?) and make sure he is not exposed to perfumes, other scented products or cleaners. Those are just common sense things, in general, for tics. You mentioned a lot of change was taking place. After you see the pediatrician, let us know what else came up during the appointment, OK? Please write back and let us know how things are for your boy this morning. We care and know what it is like to feel helpless as you watch your child tic, but be assured that there are answers to be found and you can get a handle on this. Hang in there and please write back! Sheila
  17. About two weeks ago my 9 year old son started exhibiting facial tics. He widens/scrunched his eyes and twists his mouth, generally doing the two actions together. These actions were happening really frequently in a series. We were on vacation in Vietnam with no internet or phone service at the time. By the time I was able to contact his pedi, the tics had deminished considerably. Pedi put him on amoxicillin 400mg x 3 daily. For the first 7 days, all was calmish. The last two days the tics are again exacerbated. We have also been dealing with interrupted routine, extreme heat and humidity, jetlag, diet change etc etc etc. I should also mention that my son snorts repeatedly and has for months. We thought it was allergies but now I'm leaning toward this also being a tic. Everything else is good. No attention problems, OCD, fatigue, eating changes. Tomorrow we see the pedi. 1. What questions should I ask? 2. What diagnostics should I request? 3. Yes, I am entirely freaked out watching my son tic. Any advice or consolation is greatly welcomed. I greatly appreciate your support. Sarah
  18. Thank you Chemar. This does help.l appreciate your response.
  19. Bttrfly1

    Flare

    Hi my son is 8. Diagnosed at 7 and started IVIG a few days after he saw Dr. L. Dr. L’s office did call me back. I spoke with nurse Brenda and she relayed my concerns to the doctor. Then she called me back with what do to. For my son, she said treat with Motrin 3 times a day for two weeks. She said it does the same thing as a steroid without leaving the immune system weak. Her office manager also called me back later that day to tell me the same thing. I would be persistent with them and keep trying. They respond but it seems not as fast as we’d like.
  20. bws1565

    Flare

    Hi Jsl25 I am sorry for your struggles. However, I will beg you not to expect the "tics to follow shortly". Who knows? They might not...Children live up to your expectations. If you don't think about the ticcing they might just never come. Having said that, I have had struggles with a "Sick School" in the past. If the building where the daycamp is being held is old and moldy, or very new and full of new building chemicals, these might be the culprit. A stuffy nose would indicate some sort of allergen. You might want to read Dr. Doris Rapp's book "Is this your child's world?" My son would have stuffy nose while in preschool. It cleared up when he entered grade school, and we realized the link only when he was put back into the preschool building for summer daycamp.
  21. I am sorry I don't understand the question re "combinations"? Although the areas of expertise may vary, the essence of Integrative medical practice is the same ie to adopt a more holistic method than conventional medicine does, and to consider allopathic & naturopathic approaches to treatment. Some are also trained in homeopathic medicine, or other "complimentary" treatments. Often Integrative doctors will have different members in the practice that specialize in these. As with all physicians, there are some that are better than others, and so making sure they have experience in treating what you need is important. I have always asked a lot of questions when first contacting a physician's office to be sure they are what I am looking for. Hope that helps
  22. Thank you! Of the integrative combinations was there one that worked better than the others?
  23. jsl25

    Flare

    Hi Bttrfly1, I could have written your exact post this week. My daughter (5yo) had a perfect past 4 mos. Not a single tic, no rage, etc. Then this week the hyperactivity, obsessions and rage started with a vengeance. I have no idea why and I’m devastated. I’m sure the tics will follow shortly. She started a day camp this week - is she overtures? She has a slight stuffy nose - maybe a virus? We saw Dr. L last January but she has been unresponsive to my calls and emails. I put in three calls and emails to her last winter when we were going through and she never responded to us (even though we paid her $1200 fee and drove three hours to see her in Jan.). My ped is not helpful and doesn’t do any investigating beyond a strep test, and I can practically see her eyes roll every time I show up requesting another one I’m curious to know what her response to you will be. Will you please report back when you hear? And may I ask, how old is your child? good luck.
  24. bobh

    Flare

    Sorry I didn't reply earlier - have not checked into this forum since I wrote July 6th. I think the one that we used was Quidel Quikvue (we actually lent it to someone and don't have it right now). It is used by some MD's, but then became harder to get some time back. It is often hard to figure out what is making him flare. We had one slowly getting worse over months, and then we did a teeth cleaning that dramatically increased the flare. That's when we found out he had mild gingevitus (hard to get him to brush when he is in a bad state), and (our dentist confirms), bacteria can enter the bloodstream directly through the diseased gum tissue. It also took a while to clear it, but we did. But suppose we never did a teeth cleaning - it may have been a while before we latched onto that problem.
  25. bobh

    Seasonal swing in PANS flares

    A December/January start seems unusual. It is neither high flu season, nor allergy season. Being the time of year that windows are closed, I would wonder if there is something in the house, that doesn't get diluted until windows are generally open again in June. Mold is just one possibility, another is pet allergies, if you have pets.
  26. Hello newfie (are you living on The Rock, or settled elsewhere?): Our son did get better without IVIG. But he had a lot of abx (that helped), a steroid burst (that didn't), ibuprofen (that didn't), some SSRI (very very low dose, that helped dramatically once at that low dose, didn't later) and plenty of supplements. One thing that scared us about IVIG is, that after going through the expense and trouble, there seems to be the possibility of regression after getting strep again. At least, there are some stories to that effect (I'm sure if you searched IVIG in this forum, you would find all kinds of experience). I subscribe to "try low hanging fruit first". That is, simple relatively inexpensive things that might deliver gains of significance. One of them is ibuprofen (but you can't continue a high dose for a long time - this is just a rescue protocol). Another that is even lower hanging fruit (because it is so cheap and easy to do, and not harmful at sensible doses) is to have him drink baking soda and water every day. I didn't try this (our son was better before I heard of it), but I would have had I known, based on the research behind this article: https://www.sciencedaily.com/releases/2018/04/180425093745.htm . We did try various supplements, and we did find one (phosphatidylcholine) that did help our son (but doesn't help everyone). With supplements, I would be very careful - some make some kids worse. Our kid got worse on probiotics, and I have since found that this is not that uncommon among PANS/PANDAS kids. So there is lots to try even while you book and wait for an IVIG appointment if that is what you want to do.
  27. Earlier
  28. Hi mlee We have always tried to use Integrative doctors ie those fully qualified as MD or DO, but also with training in naturopathic/complimentary medicine. They just seem to have a more balanced view and that imo translates to a better form of healthcare. Thankfully there are growing numbers of Integrative physicians.
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