Claire

Beata, This sounds like a very invasive treatment, still in the experimental stages. That doesn't mean it doesn't have merit. I can't encourage you enough to read the threads here and under the right practictioners supervision, see whether some of these other methods/tests might help. Many of us have found the same thing as Chemar--heavy metals, yeast and food or environmental sensitivities. Normal food allergy tests only cover instand reactions, there is a more detailed test for delayed sensitivities. My son had several and they do affect him. Claire

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I agree re late nights. I must work late, but that is not by choice. If you or anyone can tell me which non-dairy milks taste best or cook best, that would be great. Although I know I will just have to try them all to some degree. The ones I have heard of are: -soy (hormone issues for some) -goat (does it taste like feta??) -rice Also, I found that the Lemon, Chocolate Pecan and S'mores "Luna" power bars (for his lunch) have no wheat, corn, corn syrup, peanut or dairy. Comfort food/starch 'fillers': Rice with a little butter (I think butter is okay??) Baked potatoes with butter and melted cheese Rice cakes Potato chips (no hydrogenated oils) Rice crackers (I will try the cashew butter GL&L mom mentioned) Proteins: Chicken Turkey Shrimp/Fish? --I am a bit scare of fish right now!!! Don't know if I trust the low mercury list since tuna is on it. Fruits/Veggies--that isn't an issue ...though I can't believe he can't have apple and banana! My gosh, why is he only allergic to American 'kid food'???? Claire

GL&L mom mentioned recipes, and though I know this exists on other forums, I need help! There is a ton of gluten-free stuff, but it all has corn! If anyone has a decent wheat, corn, milk-free recipe for pancakes I will be eternally grateful. That is his 'fill in the cracks' food since no decend breads (breads have yeast anyway). Thanks in advance. I just tried my own recipe--like a big blob of paper mache flour! Claire

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Sure Renee, good luck! I hope my post didn't sound sarcastic--I feel so strongly positive about the DAN protocol that I feel that I am pushing it sometimes! Do check out my "Environmental Doctor" thread (he is also a DAN doctor, I should have put that in the title), and Jennifer's DAN doctor thread to get an idea of what they are all about. Others like Chemar and Heather have other practitioners that helped them as they followed a similar protocol. Jean and I are still in the early stages of similar testing. We just had a visit today, and more news! If you do go, we would love to hear your thoughts--we like to compare notes. Claire

I feel like I sound like a broken record to the regulars, but here is the DAN list, with MDs and naturopaths who follow a diagnostic protocol for underlying health issues aggravating neurological issues (beyond autism) then alt. paths for treatment. DAN list on www.autism.com/ari. Click on DAN on the left, then finding doctors. Claire

One other thing Janice--much of the 'natural' stuff is covered by insurance. But I am finding out that our insurance only covers about 50% of the testing. Claire ps Chemar, I know, it breaks my heart. Especially since I honestly believe that the pain is not necessary, if one has the $$, or time, and the right path. Your experience is proof that if you are willing to commit the time and effort to the research, it can be affordable.

Brian, Many of our kids have metal/mercury toxicity and many fish have issues with this. For me, the fish that have the Omega3's are unfortunately ones that my son won't eat! Claire

Janice, Although ideally pursuing things should be done under a doctor's supervision, I do recommend that you read some of the books, "Yeast Syndrome" and "Children with Starving Brains. Plus do try to read through these threads for other ideas. I can't help but think allergies or yeast when you mention diarhhea (my son had diarhhea and he had both). There are things you can do on your own, like elimination diets and food reintroduction, plus yeast-unfriendly diets to get rid of yeast problems. Both of these can aggravate neurological issues, such as autism, obsessions/compulsions and tics. Ronna, I must thank you again for posting that prayer. I had no idea it would be such a warm welcome to our new visitors and those 'passing through'! Claire

http://story.news.yahoo.com/news?tmpl=stor...ucing_mercury_2 Feds May Stretch Out Mercury Cleanup By JOHN HEILPRIN, Associated Press Writer WASHINGTON - The Bush administration is leaning toward stretching out plans for reducing mercury pollution from power plants until 2018 after concluding that technology for quick cuts isn't available. Some plants would be able to buy their way out of reducing emissions. ....

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Michael, I forgot to add that the DAN approach and testing is FAR less invasive than some of the experimental PANDAS treatments such as the IV. My son only had 2 sets of blood tests, the others were urine and stool. Claire

Hi Michael, I think the best way to answer your questions is to provide research links. http://www.neurotransmitter.net/pandas.html The only way that I understood the antibiotics was: 1) if you hadn't gotten rid of the strep fully then it would cause ongoing problems, so it was worth taking a round to erradict the rest of the infection. 2) prophylactic use to prevent future strep. Every study I read on this was questionable at best. I know that Ronnas stopped this ongoing antibiotic treatment and is now doing the yeast and immune system building treatments that even the non-PANDAS families here are doing, and has had good success. Michael, I spent time in trying to investigate PANDAS and the approaches there, but ended up with a DAN doctor for 2 reasons: 1) After calling the NIH and trying to get local names who not only knew what PANDAS was, but treated it, I failed. 2) I became convinced that the DAN protocols and treatments were appropriate for PANDAS also, and Heather's and Ronna's successes (though anecdotal) were further evidence of this. My son has not been diagnosed with anything because his symptoms didn't linger (though I do understand how they change life for the whole family), so his case is much milder than most...but even so, he still had the same underlying issues (yeast and heavy metals). I can only assume that you have read about vaccines/thimerosal/mercury and autism correlations? So heavy metals issues are a strong possibility for your child. I will offer one other piece of unsolicited advice: For my son, TV/Computer/Video games set off not only tics but fears/compulsions. I would pay very close attention to see if you notice any worsening of symptoms during/following these activities. My nephew has OCD and his dad had noticed this also. In any case, if you have any indication that this may be the case, then I would see if you can eliminate any 'screen' viewing/play (including gameboys) for 7-10 days, to see if you notice improvement. We have theories on the board as to why this triggers neurological problems (e.g. the flicker, the rapid action, the repetitiveness of certain games), but in any case, the elimination of these completely eliminated both my son's tics and fears/compulsions. He can now do occassional LCD monitor viewing of TV or static computer games/programs, but we tested it gradually to see what he would tolerate. A number of people I know now notice the correlation with tics, and since both are impulse control issues (that important basil ganglia), I feel that OCD would be correlated. Unfortunately, I have no studies, only the anecdotal comments from other parents who have tried this with their child. This 'solved' my son's problems, but would be an unlikely thing to control indefinitely, thus his DAN doctor is working to 'fix' his immune system. In the meantime, many many people have commented on artificial colors and certain foods causing reactions. If your son is like many of ours, his immune system doesn't detox well and it throws his entire system off. While PANDAS is all about the immune system, so much of the PANDAS focuses on the proteins, etc... and I believe there is more proven success in just bolstering the immune system in general. Congrats on your DAN doctor appointment! Please keep us posted! Claire

Chemar, Thank you very much for that explanation. I will ask about this on Tuesday. It makes a lot of sense. When we started the supplements, we didn't know for sure if he had issues with heavy metals, so this may change things. It is a bit nerve-wracking! Claire

efgh, I get that sometimes when I am falling asleep. From what I have read it is not indicative of any other problem, but maybe others here have found more to it. Claire

GL&L, Great point--how perceptive to catch that possibility. My son was never sensitive to computers until we moved into an apartment with carpeting (while we were remodeling). Then we moved into our remodeled and freshly painted house (though with hardwood floors) and his sensitivity got a lot worse. By the way, we just repainted the inside with low-odor paint, and he has no problem with it. Claire

Tator, First of all, you are absolutely right about most doctors wanting to prescribe medicine! The type of doctor I was referring to is not a 'typical' doctor at all. These doctors are specialist in dealing with a spectrum of neurological issues who avoid pharmaceutical treatments and instead look for things such as metal toxicity (mercury), yeast, allergies, sensitivities... that might be triggering your tics. They then suggest over the counter natural supplements to help correct the problem--not just to try to stop the tics with drug. All the regulars on this board are avoiding using drugs on their children (most of us are parents). Many have already been successful. Second, IF TV/computer is an issue for you, it takes about a week for the affect of the TV/computer to get out of your system. Even a few minutes will set my son off for days, so I wouldn't expect just being away for one day or two would be enough to eliminate your tics. My son started getting tics at age 8--especially eye blinking. He was ticcing all the time, not just during computer. But he stopped computer and we noticed a drastic improvement in a week, and by 10 days or the ticcing was completely gone. By flat screen, I mean an LCD monitor (and I think plasma)--I think that 'flat screen' can mean other things. Are both your TV and computers LCD monitors? Do you do ANY computer or TV/video viewing on a CRT monitor (the big fat ones--sorry, you probably no all the terms), such as at school? With my son he needed complete avoidance(including big screen movies!) for the full week. Others here could tolerate some, but my opinion is that this is the only way to be completely sure. If it 'works', then you can test out LCD monitors a bit at a time. I have lots of recommendation there (e.g. no more than 15", a well-lit room, sit 9 feet away, lower the brightness--but it is best to take it one step at a time. If NO tv/computer for a week makes a big enough difference for you to think it was indeed a trigger, then I can talk to you in more detail about how to see what you can tolerate. My son went a little crazy with no TV/computer initially (now he no longer misses it), so we stocked him up with comic books and book tapes. He will still re-listen to his Harry Potter tapes when he needs some down time. There are other tic triggers, but I don't want to load you down right now. I will mention that for some people the chemicals in artificial colors and preservatives can be enough to set off tics, as well as caffeine. Please DO check back with us. If it doesn't work, there are other things that have worked for other people here. I didn't mention them now because many involve vitamin supplements, and that is best for a teenager (or anyone!) to do with a doctor's guidance. You just need the 'right kind' of specialist (naturopath/MD) and some are on that list I posted. There is a path to solve this, I hope you get lucky right away! Claire

So ALA is Alpha Lipoic Acid, and it crosses the blood brain barrier--whatever that means? My son was deficient here so he is taking this supplement. What is the risk here, please?! I will also raise this with his doctor, so much to ask him about! Claire

Thanks Chemar! I was trying to make the same point that there is no one panacea. I assumed from reading Mrs. Doubtfyre's comments that this was her biggest 'breakthrough' for her child. But regardless, I too don't believe in a one size fits all, as you know. I will edit my old post! Claire

Dear Michael, My son gets "OCD" symptoms during strep (three times, but they went away when the strep was cleared). So I can related to your 'crisis'--if only for brief periods. ;( I had difficulty finding a doctor who had ever heard of PANDAS! Finally I talked to our ENT who treated him for strep and he had heard of it. Did you have your son tested for yeast (candidas?). I am reading more and more that OCD issues are greatly exacerbated by/related to immune issues, and I am personally convinced that part of the PANDAS issue is that the repeated use of antibiotics causes a yeast condition, which greatly aggravates the OCD symptoms by lowering the immune system functioning. Here is a case study on yeast and OCD, posted by Chemar http://www.nutritioninstitute.com/Tourette...s_Syndrome.html I cannot recommend strongly enough that you to look for a DAN doctor in your area. They specialize in identifying underlying conditions that contribute to 'autism spectrum disorders', including heavy metal toxicity, yeast, low antioxidants, metabolic issues, food intolerances. My insurance covered the testing at about 50%. www.autism.com/ari Click on DAN on the left, then finding doctors (It lists MD's naturopaths for your area). I encourage you to go to the tics thread here. It is a very active board, and Tics and OCD are so often comorbid that we are finding treatments for one help the other. Some of our kids have aspergers, tics, TS, OCD... Remarkably, the vast majority of us have found similar underlying conditions through testing. http://www.latitudes.org/forums/index.php?showforum=1 Ronnas on that board has a son with Pandas, as does Heather I believe. Both of them are seeing doctors/naturopaths guiding them through correcting underlying imbalances (both of their kids had yeast issues) and BOTH have had great success. What surprised me that it doesn't matter what the origin was, ie PANDAS or not, the underlying conditions and treatment is similar. As for immediate relief, please ask Chemar on the board re over the counter supplements. She has found 5HTP and others very helpful for her son, and others have followed suit with success. Even so, she also corrected the underlying conditions in her son with TS/OCD. God bless and good luck. Claire

Dr. Rapp's book (Toxic World, or Is this your child) lists a carpet testing facility. A story in her book showed it lasting for many many years. I think Sheila may have posted something in the carpets thread? I have posted before that some carpeting is a 'nightmare' for our son, even in my husband's car--which has some odd fragrant odor to it. I have leather seats. Claire

efgh, Sorry I don't know the details! I came in after she already did it and she was just posting research on fatty acids in general. There was a big debate there by well-researched people on proportions and what kind omega3 vs omega3, and more...this is why I had my doctor run a test. Claire

Hi Tater, My son is private about this matter also. I encourage you to read more on this board--there is too much to put all in one post. This is a lot for a 15 year old to do on his own. I would just say that there are doctors out there who have had great success in treating this without drugs. Those of us here avoid drugs and are trying other methods. Some have been very successful. If your parents have insurance, we have posted doctor list to find a doctor in your area. It is pretty expensive though! During these times when you have tics, do you notice them getting worse during or after computer/TV/video games? If so, one quick thing to try is to stop TV and computer and movies for a week (I said quick, I didn't say easy). My son's went away 100% after this. If that works, you can switch to smaller flat screen monitors that don't flicker. Good luck! Claire