lfran

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 think the radiologist who read them was looking specifically for basal ganglia issues. She was initially placed on 250mg of pennVk by a rheumatologist, who did not think she had PANDAS(because titers were not elevated), even though her medical records clearly showed a 2 year history of behavioral reactions correllated with +strep tests and periods of calm correllated with neg. tests. Anyway, the pennVk didn't work very well for her, in fact she still had a couple of +rapid tests while on it. Her pediatrician agreed to switch her to zithromax and that has worked well for her. Our experience was that you absolutely MUST deal with yeast issues (wish we had sooner). Yeast can bring about a whole host of behavioral by products and it begins to get difficult to sort out what is strep related or yeast related. My daughter is on an antifungal (Nytatin, but used to be on diflucan) + we use S-boulardii. Probiotics seem to make her gassy to the point where its painful, so I've pulled back on them.

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

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 insects. He was pretty nonchalant about it. I think he is just now beginning to feel the premontory urge before the tic. (There is a behavioral study at UCLA that wants to wait until kids are 9 before accepting them because they say that at age 8 or 9 is when they can usually start to feel this urge). When I told my son that we were trying things to stop the tics, he said that he "kind of liked them", but on questioning it turns out that he didn't want us to take away the behavior that stopped the urge. I explained that we were going to try to stop the urge itself and then he was okay with it. Right now, he has two main tics. One is rubbing his eyes followed by slapping his face and the other is slapping his book closed in the middle of reading it. Since he loves to read more than anything and will read most of the day when he can, I can see how this would be very very frustrating for him. But he seems to be taking it in stride. I wish you well. -- Liane

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 last 18 months, and only the DNASE tests come back abnormal. Our ped is wonderful, but has no experience with PANDAS. We are on Bontech supplements, plus probiotics. I want to try azithromycin, but our ped is reluctant. Can someone advise me: 1) is azith a good idea? 2) if so, what is the standard dosage for something like this? 3) where can I find external references -- Medline, etc -- to show our ped to help make her more comfortable with this. 4) any PANDAS doctor recommendations in the Southern California area? Especially within Kaiser HMO, but really, anyone. 5) any other recommendations? At my request, she just authorized nystatin, but then I read up on the "die off" reaction which has a high likelihood of a flu-like reaction and that is just what we *don't* need at this time of H1N1 concern. So I think I want to hold off on that for a couple of weeks until we see what H1N1 does. (I also don't want a weakened immune system for him if there is a potential pandemic going around, you know?) Please, any help would be appreciated. Thank you.

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

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 effect? He is too young to donate blood, and I don't think his doc will order blood draws just to test this out! Thanks for any insights. -- Liane

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?

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 doc yesterday for a rash that rings his mouth. I thought maybe strep-based impetigo, but she thought it was lip-licking dermititis and prescribed topical mupirocin (bactroban). She also did a 48 hour throat culture, should get the results tomorrow. I can make a clinic appt for Saturday (tomorrow). But...what do I ask for? Propylactic antibiotics on the thought that this is PANDAS? This is really upsetting, as I have noticed very very few tics in months (although my husband says he's seen some). Can anyone help? -- Liane

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 to come out by itself. He needed an extraction last winter for the same reason, and it was right before a major tic spike, so I want to explore prophylactic antibiotics, due to the high anti-DNASE levels. Any advice on which antibiotics/dosage/how long? I have a call into his pediatrician, but I don't know if she has a lot of experience in this arena. Thanks! -- Liane

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 that showed an abnormality was the DNASE, which continues to be high, although lower than before. I don't really think he's PANDAS, though -- he had one confirmed strep and that was not coincidental with a tic onset -- the strep occurred a year after the onset, and there wasn't an upsurge around the infection time. But I'm still pursuing that route, too, as the DNASE has me concerned. One reason I think maybe it's PANDAS/immune-related, though, was the most recent wax started in mid-January and he had a tooth extraction in very late December. I want to explore that, so that I can ask for prophylactic antibiotics for future dental work. Thoughts? Does anyone else get prophylactic antibiotics for dental work? And if so, who prescribes them -- the dentist or the MD? Thanks! -- Liane

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 of 680. (680 in March, 380 last week. I wish I had tested it in between, but he was terrified of the blood draw and so I didn't force the issue. So, maybe that's the reason -- but I'm continuing to use the cream, as the timing just seems so spot on. Also, we go to see a metabolic specialist this week for the first time. I will post if there is any news from that end. Does anyone have any advice as to what to ask her? Thanks! Liane

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?

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!

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.

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 them. Can he really not be noticing them? Any thoughts, since he seems unconcerned, and they are not an issue socially, since no one can see them? It's been about 3-4 weeks of this particular tic now. I am still seeking ways to reduce/eliminate ANY tics, but I've gotten so tired of being constantly vigilant. Is this a good time to just sort of relax the vigilance? Thanks for any insight.

Thanks! I will look into these suggestions. It does help if we cover one eye. -- Liane

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!

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. Also, so many people have posted about artificial colors, etc, being a trigger but I never see a relationship. Not that he eats tons of the stuff, but he has the occasional lollypop, birthday cake, etc. Are there others out there for whom artificial colors are not a problem? I feel awkward and watchful everytime he has a sweet, but I just don't see a relationship. Thanks.

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 tests that we should ask for? And/or, do you guys think that it's okay to supplement iwth Candida Clear or its equivalent without a definitive diagnosis of overgrowth? Thanks! -- Liane

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 fish oil and better on flaxseed oil. Thanks! (Also, please give the gender and age of the person involved). For instance, I would answer: Male, age 6, #5. (Also, is there any way to set up an actual "poll" on a topic? Yahoo groups lets you, but I don't know how to do it here. -- Liane

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 is, not himself being aggravated. He's a very mellow child).

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 about it and he thought it might be because the irregular heartbeat and palpitations were physiologically causing my anxiety -- ie, the body feels the irregularity and palpitations and reacts accordingly. The med is supposed to be quite safe. Don't know if your son has any heartbeat issues/palpitations that might be similar to mine, but I thought I would post just in case it might be helpful. -- Liane

Have you tried straight milk? It may be that the processing into cheese and ice cream reduces the effect they are looking for? Or, to try to increase tics, try television and video games, which most people here have said spikes tics. Also fish oil capsules -- that seemed to spike tics for a lot of us! (Are you comfortable spiking the tics, though? I'm wondering how long it will take them to come back down after you deliberatly try to spike them.)

I posted earlier that my son had been doing really really well with Bontech supps and flaxseed capsules. Last Wednesday, he had a lot of peanut butter, which I just found out he is mildly allergic to. (He has eaten it for years, but we pretty much stopped it in March as we went healthier overall and just recently learned he was allergic to it.) On Wednesday, after a lot of peanut butter, his tics increased a lot. Not nearly as much as when he was most affected, but they went from about 5 a day to a handful an hour, with some spikes. (In March, he was at about 5 a minute, so we're still seeing much less than before). If this is a reaction to the peanut butter, any thoughts on how long this spike will continue? I know that it may be something else -- school just ended, there have been a LOT of birthday parties with cake icing and ice cream, but it was so immediate after the peanut butter that I really think that is the culprit. And, if it is a peanut butter reaction and we stay away from pb, will it gradually wane, or just "turn off". in your experiences. Thanks! -- Liane

Thanks! Sorry, no knowledge about the UK. Did you email/call the two Bontech supplliers to see if they will ship to the UK in an affordable fashion? -- Liane