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Everything posted by lfran

  1. Hi all. I know there were a lot of posts in the summer and early fall about people who were trying splints for TMJ to reduce tics. I remember that some people had a lot of success and others had almost no success. I am considering trying this route and was hoping that the people who had initial success might post a brief update as to whether they are still thinking that the splints were a helpful route to go. Thanks so much! -- Liane
  2. Thanks you! Have you seen anyone else in LA for this? I would love any recommendations you might have for any medical practitioner. I am also considering that he may be an atypical PANDAS case, and am following up on that this week. I have seen only one PANDAS doctor listed for LA, in Burbank, but maybe you know of others? Thanks again.
  3. Hi Dalit. We are also in LA, and my 8 yo son has been having a significant waxing for the last couple of weeks. Would you be able to share any contact info for this specialist who is coming to LA, and the osteopath that he is working with? I would like to learn more, especially if there is a short (and upcoming) window in October to possibly do something about this. Thank you! -- Liane
  4. Hi. I'm rejoining the PANDAS board after months away (ds was really low level for about 6 months, so just sort of took a break, but is now pretty high again after a recent (non-strep) infection. We are trying Nystatin for the first time, and I think we are seeing an improvement. He is on 2 million IU for 2 weeks. He is taking the tablets, which are supposedly for intestinal yeast. Is Nystatin supposed to be a long-term treatment, or is 2 weeks enough to deal with this? Thanks! -- Liane My daughter has had 2 MRIs, neither of which showed any abnormality- though I don't thi
  5. For a Dallas doctor, you might want to consider this. Great Plains Laboratory is sponsoring a conference on biomedical approaches to Tourette's/OCD/Depression in Dallas on May 23 and 24th. The website is: http://www.touretteconference.com/ One of the speakers, Constantine Kotsanis, MD , is local to Texas and is also sponsoring a post-conference clinic for potential patients at the end of June. I am considering attending, even though I live in California. Hope this helps. - Liane
  6. We have been dealing with this for a couple of years now. My son is almost 8. At first, we told him that the supplements, etc. were to make him strong and healthy (which is, of course, true). And that the food restrictions were because of allergies (which is also true). When we cut out all screens, we told him that our family wasn't doing that anymore (and the adults didn't either, except for internet. No TV/movies/games etc for any of us). We just a couple of months ago told him about the tics. We used the term "motor tics" so that he (and others) wouldn't get confused with the insect
  7. Hi all. Since Sept, my 7.5 yo son's tics have been really low, with one short spike during a croup infection in Feb. (that ended precipitously with a major blood draw for testing) and a current really high spike that started in early April after an impetigo infection. What concerns me right now is that this is the first time the tic is a pattern -- rubbing his eyes, then slapping his face -- and that he seems to be hurting himself with this slapping. It is now much much worse than it has been. And our state testing (2 weeks of it) starts in 9 days. We have run so many tests over the
  8. If you're okay with presciption meds, here is one idea. I was put on atenolol (a beta blocker, considered very mild and very safe, at least for an adult) for cardiac arrhythmia but I found that it did a wonderful job in also reducing my anxiety levels. Did some research and found that it is known to have that effect. It is something you might want to look into, as I was told that it was a very safe med. (I think atenolol is the brand name for propanolol). -- Liane
  9. Hi all. We had something interesting happen this spring. My 7.5 yo son was in a high tic state and we had a lot of tests done. About 10 tubes of blood were taken pretty late in the evening. Went home, went to sleep, and in the morning the tics were almost completely gone. Way fewer than ever before. This lasted about 5 weeks, and then we went on vacation, he got an infection, diet was not very controlled, etc. and he is back to high-moderate amounts. My question is, has anyone else experienced this with major blood draws? Or, for adults who have donated blood, have you seen any eff
  10. Thanks. The 48 hour culture came back negative -- it usually does, even though the titers are always higher than normal range. I have an appointment for Mon evening. Based on a comment the doctor said, I'm wondering if his adenoids are enlarged. He has all the classic symptoms -- chronic mouth breather, restless sleeper, snoring, keeping mouth open most of the time, etc. Could they harbor strep?
  11. Greetings. My 7.5 yo son was doing so well since mid-September that I really thought his tics might be so low-level as to not be an issue any more. But now they are back worse than I've seen in a long time. I could really use some advice. Many tests have come back negative, although he had a high DNASE and ASO at his very worst almost 12 months ago. A titre done in the summer showed them gradually declining. He is due for another titer in early Feb. He had croup, with a fever and bad cough, about 10 days ago. About 5 days ago the tics started coming back. He also was at the do
  12. Hi. My son has had pretty high anti-DNASE levels (680 last winter, high 300's early fall). He has had a lot of tics in the past, but not very many recently. Not sure if it is due to DNASE levels going down, and/or to supplementation, allergen avoidance, and really cutting out most artificial colors and flavors. I actually think it is mostly peanut-avoidance, because we see a spike whenever he inadvertently eats peanuts (to which he is mildly allergic). However, he is probably going to need a tooth extraction soon. He has a tooth coming in and the old one probaby isn't wiggly enough
  13. Thanks, Chemar. I think I got the idea from you earlier in the summer. I found the baths didn't help too much -- we have an extra deep bathtub and perhaps the salts were too diluted. And everytime I tried to make my own, it was a royal mess! (If you could post your recipe, maybe I'd try again, but I wasn't too successful the few times I tried!) If it's really the cream working, then I am so incredibly grateful. Basically, I'd pretty much say he's essentially tic-free now and has been for a few weeks. I had all these metabolic tests done in the last couple of weeks, and the only one
  14. Just wanted to say that I added magnesium sulfate cream (epsom salts in a cream base) to my son's regimen about 3 weeks ago and the decrease in his tics have been dramatic. Now, I may see only 3 or 4 a day -- and just one instance of it, like one eye roll, or one head nod. I give him a scoop morning and evening, in addition to Bonnie's supplements, flax oil, coenzyme Q 10, and methyl b-12. I get the cream online from kirkman labs. I know that it could just be a waning period, but it really times out with the cream. I also had his DNASe level tested, and it is down to 380 from a high
  15. Thanks very much. We see the pediatrician tomorrow and I think we will get a lot of tests ordered then. We are in Los Angeles -- I imagine Dr. Gupta would be the better choice for us? Does he take new patients?
  16. My son tested quite high for DNASE a few months ago (680) and we will have the test repeated next week. I have been reading about IVIG and a lot of references to both Dr. K and Dr. Gupta. Can anyone tell me their full names so that I can try to reach them -- and/or other docs that are highly trusted for IVIG? We are with Kaiser -- I know that at least one person posted that they got Kaiser to administer IVIG. However, I can switch insurance plans as of January 1, so can anyone tell me if Blue Shield covers IVIG, if we get a PANDAS diagnosis? Thanks!
  17. Can anyone address this: It seems that specific antibiotic treatments are the treatment of choice for PANDAS, yet antibiotics in general make one susceptible to yeast infections, which are also implicated for tics. How does this work? Thanks.
  18. Hi all. I was just hoping for some feedback. My 7 yo son has had a variety of motor tics this past year or so. A lot of facial and arm tics, which were very noticable and frequent. We've tried a lot of the supplements, and they seem to help. Right now, however, he's ticcing a lot, but it's all abdominal tics so no one can see them unless he's not wearing a shirt. And, he seems completely unaware/unconcerned about them. When I notice them, I figure it must be painful or bothersome, because sometimes it's pretty frequent (multiple times per minute), but he truly seems unaware of t
  19. Thanks! I will look into these suggestions. It does help if we cover one eye. -- Liane
  20. If you want to try capsule based supplements, you may be able to teach him to swallow pills. I was able to teach my son at around age 5. The doc told us to get a pack of M&Ms (not the best choice if you're avoiding artificial colors, though ) and place them on the tongue like a pill would be and just keep practicing having an "ocean of water" wash the M&M down. It took my son about 6-7 M&Ms and then he learned. Now he's 7 and he takes tons of supplements without any problem at all. Hope this helps!
  21. Hello all. Just curious. Right now, I think that the only time we are seeing any tics are during reading. We went to a specialist (neuro-opthalmologist) who said that binocular vision issues are NOT causing an increase in tics, but I still think it is. (My son does not have binocular vision due to an unrelated opthalmological condition. So he may be switching between eyes to read, or doing some other accomodation that takes up a lot of neurological focus). Does anyone have any clues for us? He loves to read. I have tried different light levels. I am looking into Vision Therapy.
  22. Are teeth issues associated with tics? We just went to the dentist, and my 7 yo has 6 or 7 teeth just starting to come in -- 3 molars and some others. Motor tics are at an all time low, but now he's doing a lot of verbal tics, especially (perhaps exclusively) while reading. This is totally new. Any advice? The teeth don't bother him, but the fact that he is now having verbal tics is concerning me. Also, I saw that a lot of you use Candida Clear or similar treatments. He tested negative for yeast overgrowth with the basic GI test that his pediatrician did. Are there other te
  23. I have a family member who is a research scientist. One of his colleagues is currently investigating fish oil -- not for TS, but for other purposes. I mentioned how so many of the people on this board do worse on fish oil and better on flaxseed oil. We thought it would be interesting (and a possible research topic) to investigate this. Soo.... Can I have a quick count of how many people 1) Do better on fish oil 2) Do worse on fish oil and didn't try an alternative 3) Do worse on fish oil and flaxseed oil 4) Do better on flaxseed oil -- never tried fish oil 5) Do worse on
  24. Hmmm...my son is pretty musical too. In fact, the last round of tics started after he begged me for a violin and I finally gave in (he'd been asking for about a year or more). As soon as he started, we started noticing head and shoulder tics that seemed quite related to the odd body position you have to maintain to hold a violin correctly. So we switched him back to piano (no odd body postures). His main tics are eye blinks and eyebrow raising when mild, with added jaw dropping when moderate, and additional shoulder shrugs and hands to chest when in aggravated mode (high tics, that i
  25. I haven't been following this thread, so I don't know about the anxiety issues and what is causing them and what you have tried. I will, however, post from my own experience. I have always been quite anxious -- no known diagnosis (never thought to seek one), just anxious a lot. I recently went on atenolol - a very mild beta blocker -- for an irregular heartbeat and palpitations. What do you know -- my anxiety went down about 95% almost immediatley. It turns out that is often a side effect of the med and the med is sometimes prescribed just for that reason. I asked my cardiologist a
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