Claire

Spartan, I suggest that you get a throat culture in case you are a strep carrier. Like Frank said, I believe that a round of antibiotics is fundamental if there is strep and it is causing PANDAS. Otherwise, please read some of these threads...lots of people have improved bigtime with some of the ideas here. It is trial and error to a large degree, unless you are managed by an alternative doctor--even then some trial and error is involved. Many triggers are common though (certain foods, artificial ingredients...), but first I would get the strep checked. Claire

Natalie, We use Oreck because it is so lightweight and it is gentle on hardwood floors. www.oreck.com. Our model is old, and I don't think they carry it. But they are really expensive and the important thing is just to get a HEPA vacuum. I noticed some affordable ones here (my one-stop allergy resource...) http://www.natlallergy.com/ As for the car, is it carpeted or leather? My son used to have horrible reactions in a carpeted car--especially my husbands car. Even now, the memory is so strong that we avoid having him in that car. When I bought my own car, I had all the cloth upholstered seats pulled out and leather put in (after it was delivered--for some reason it didn't come with leather), and he has never had a reaction in my car. I am convinced it is the leather vs the dust-mite haven/synthetic fiber upholstered seats. (Our floor is carpeted, but didn't seem to impact him). I know not every child reacts this way, but it sure sounds like yours does too. Maybe try this experiment: vacuum your car well and air it out (no scented fresheners of course). Then put a sheet over each of the front and the back seats. (Your child is young right? He shouldn't care about your trying this out? I can't find the price, but we bought this small HEPA air filter to plug into the car cigarette lighter. I think it was $60. If you make sure to run it in the car for 10 minutes before you pick him up. http://www.airfilterstore.com/amaircare/ Any way, if you do this and he doesn't grimace when he is in the car for several days, you will have your answer. If he does, well it is likely to be something else, or he is really really sensitive. He is not waiting for pick up around a lot of exhaust, correct? I remember Doris Rapp in her book commented on that setting kids off (though she doesn't discuss tics). I am so happy that you have healthy food choices now, that is just wonderful!! Good luck checking out the salicylates, let us all know either way. You have a new home? It wasn't freshly painted was it? That can be an issue if it isn't low VOC paints. (for kids who are chemically sensitive). So sorry to hear your frustration, I have been there too. 2 steps forward, then 2 steps back, seemingly out of nowhere. Claire

efgh, I don't know my son's normal reading--I bought the peak flow meter when he had this bronchitis/sinus infection, so he could observe the progress. Glad the fever broke! I assume you have the hepa filer on and the bedding freshly washed for the cough (as I told Alison) --ths makes a difference for us. In fact, I didn't hear my son cough this morning (finally!), my fingers are crossed. Claire

First and foremost, we keep a HEPA air filter in the bedrooms running all night and I strongly recommend it. I also noticed that when my son got allergies, completely washing all his bedding helped. As much as Threelac trials for yeast aren't available, these were the trials for it for allergies which to me were impressive. http://www.nutraingredients.com/news/news.asp?id=8141 http://www.mayoclinic.org/sinusitis-rst/fungi.html I used to get respiratory allergies and did the skin prick tests and was allergic to things year round. I personally give myself antigen shots and swear by them and the HEPA filter and hardwood floors. I do HORRIBLY with carpeting, so we have removed it all. Funny, my husband denied any allergies, but he notices the difference too. Claire

Hi Alison, I don't freeze xanthum gum, I just read it about the flour. Though I did read it for baking powder, so maybe it applies? We freeze our bread. I agree that it doesn't taste as good (nothing is better than fresh baked bread...), but we just don't go through it that fast. As for the toffee bars, I debated posting this, but since it is her copyrighted recipe (I just used a different flour, but the recipe is 100% intact.) I realized I couldn't do it. I think it is worth the price of the book though. (The sugar cookies are good too). Claire

For the reasons you state, elimination as a test method is challenging. So we did the blood test ($300) at www.elisaact.com. Needs a doctor's signature. Symptoms typically reduce in a week. If you stay off the food, they stay reduced, that's how you prove it isn't waxing and waning. Claire

efgh So sorry! We found ibuprofen best for lowering fever (I found nothing on health sites for it). The other thing is a tepid bath (cooler but not cold)--that will work--too cruel on him if he has the shivering fever though (ask you doctor about this). If no bath, maybe a bag of ice on the back of his neck? I would ask the doctor though because to some degree the body is raising its temp to kill the infection. 103 sounds pretty high though... Be sure to have him drink lots of fluids. I will say a prayer for him. Sometimes you just need the antibiotics! My son is still on them.The Zithromax helped the sinuses, but then his bronchial cough (lots of phlemm) got worse. So they put him on Cefzil and this is day 6 with no improvement. But no fever anymore and he is out and about. But his peak flow meter is only 200 from the bronchitis...The doctor was a bit concerned about the low reading. Claire

Bummer, I sure hope you are keeping the cat out of his room and are running a HEPA filter in there 24/7. MSM is a natural supplement that is supposed to reduce congestion/mucus from allergies (ask at your health food store). Also, I think that the one thing that clinical studies in Japan 'proved' Threelac (or the active ingredients in it) was effective for was for allergies. Of course it could be through the reduction of yeast, which is not clinically documented yet. Claire

Mercury removal, I learned something... http://www.health-truth.com/articles/mercu...ury-removal.asp

Hi Layne, Well, our kids certainly often have similar underlying issues as ASD, just different conditions. Sorry to hear re the glutathione levels being low--but at least you have something to go on, yes? My son was also low in pantothenic acid. We had bad luck raising glutathione levels with just oral supplementation, and even with the precursors alpha lipoic acid and cysteine (apparently ala feeds yeast also). So I just ordered the glutathione lotion from Kirkman also--what a coincidence. It hasn't arrived, but lets keep eachother posted! I think it was Jennifer who suggested putting it on the feet. I don't have any direct feedback yet. What was encouraging to me was that the article said that the levels could be positively impacted. Claire

http://healthinfo.healthgate.com/GetConten...&chunkiid=33802

Andy, Most here haven't done chelation or serious mercury removal (Chemar did some with chlorella and accupuncture) and Mustang Carole did some. While I have never personally visited the Autism board on Braintalk, it is incredibly active (I just spotted 23 people are viewing it as I post this). This is where chelation and mercury removal experience will be the most prevalent, due to the greater awareness of mercury as a potential factor in autism. http://brain.hastypastry.net/forums/forumd...isplay.php?f=91 Latitudes hosted a forum discussion with Dr. McCandless on this a while back. Here is the link. http://www.latitudes.org/forums/index.php?showforum=11 Here is a subtopic there on chelation http://www.latitudes.org/forums/index.php?...p?showtopic=243 Good luck, you know I agree with this. Although I always believe in testing before treating. Unless you do something more innocuous with no harm even if there is n no mercury. Claire

Dear Guest, I immediately thought of diabetes from the title of your post (increased thirst and thus increased urination). glad it is under control. Are you aware that niacinamide and chromium supplements can also help with diabetes? (Ask your doctor). Since you were on antibiotics, I assume you were tested for a bladder infection? Low zinc can result in more infections. If the urination issue is at night, I found that zinc taken by itself at bedtime helped me sleep through. As for supplements... Uva Ursa is a natural supplement for urinary infections, but there is some concern re liver toxicity. It is not to be used for more than 2 weeks. Unsweetened cranberry juice is the old standby, but you must drink incredible amounts, and I bet this would be horrible for diabetes. Here is a link discussion natural methods for bladder infections. http://healthinfo.healthgate.com/GetConten...&chunkiid=21411 I tried Usa Urva once and it did help--but I would ask your doctor given the potentially toxic issues. I used it for 3 days after the antibiotics didn't seem to fully correct the problem. However, if the problem is something else, then certainly the treatment would be different. Also, yeast overgrowth can lead to chronic bladder infections. Also, the antibiotic might be the wrong one--something you are resistant to. Finally, if it is a bladder infection, please make sure you are fully emptying your bladder, this results in the bacteria bulding up. I hope you are doing probiotics 2 hours after the antibiotics, or the yeast will get worse (can be in the gut, not necessarily a vaginal one). Good luck! Claire

Marie, You know from my posts how much of an impact I think pyroluria can have, especially for those with light sensitivity and poor dream recall. Given what you described, it sounds like your son did/does have it. (though I prefer testing first before treating). My view on vitamins is almost always this: add one new one at a time. Easier to say than to do! Good luck, and let us know how it works out. It sounds like the tics from the cold went away? I will let others chime in... Claire

Andy, We got rid of my son's mercury by supplementing with the antioxidants in which he was deficient, based on the www.spectracell.com test. He was low in cysteine, selenium, glutathione and alpha lipoic acid. It was a slow process and not DMSA, but it worked. His yeast went up during it as predicted, but came back down to prior levels after nystatin. Heather used NDF--she hasn't been posting much, but I remember she was happy with it. I too believe that mercury from vaccines is at the heart of this for many children--never all, that would be too simple. I think it was at the heart of it for us. Pfeiffer sometimes uses zinc and selenium for metals. They are not into DMSA, but prefer antioxidants. Claire

Marie, We have a thread on methylation with more detail. http://www.latitudes.org/forums/index.php?...inter&f=1&t=837 Pfeiffer is a well respected clinic that does a lot with immune issues for add, ocd and autism kids. I tend to review their research a lot. We have threads on Pfeiffer--Jennifer, Nancy and I all did their outreach clinic. You can check it out on their topic methylation--and a number of other things. http://www.alternativementalhealth.com/art...icles/walsh.htm I don't know the rest of what you were asking--out of my area of expertise. Methylation issues can supposedly be treated. Claire

Hi Marie, I think you know that TV can have a delayed tic reaction,--I sound like a broken record, but it can last for days and up to a week. So I would keep an eye on this. I think they need to be able to feel free to scream or whatever in the safety of their own home. As long as they can go somewhere where you don't get a headache from it. Some like 5HTP a lot, e.g. Chemar's son. But as I keep posting, for undermethylated kids, Pfeiffer says it is bad. So you can either try it and see for yourself, or get your doctor to do the labcorp.com test. Claire

Marina, That is awesome news. I am so glad that your son agreed to extend the test. Yes you should be proud of him. I understand your not asking the tics vs computer question, it implies a choice you may not wish to imply. Okay, my thoughts: 1/2 hr LCD every other day then every day in a well lit room. Remember, only a 15" monitor--hopefully you can buy the computer/TV monitor combo such as Samsung makes. My middle school son brings this on overnights and the kids say 'cool' because it is so high tech looking. Start with normal TV or a static game, not a rapid action game. Does he like RollerCoaster Tycoon, SimCity, the Sims? Or those conquest games (I haven't seen them, but assume they are static). For typed schoolwork, I like the Alphasmart. You type in in with a tiny LCD screen and so it doesn't count as computer time for our son. A gray screen. Really lightweight and portable (Chemar uses it for her son). Then you plug it in to a computer and transfer it to a word processing program and can make it neat and pretty. This will mean you don't have to type all his homework. If he has a reaction, see whether skipping a day is enough to get him back on track. I think an Osteopath visit would be great to bring his baseline back to start over with the test. For us, it was a bummer, we had to do a no screens week each time to clear his system. Really though, I keep saying: we went a 18 months with virtually no screens at all ...it took us a while to figure out that LCD's didn't flicker--my husband's brainstorm which I then researched on the photosensitive epilepsy sites to confirm. Oddly they didn't mention it when I first did my research, maybe because it is newer technology. But he continued to be sensitivity until we treated the mercury, deficiencies, pyroluria. (For Heather, yeast reduction got rid of the photosensitivity). Now he has no limits to the amount of LCD viewing he can have and has done 4-5 hours on rare occassion (e.g. when he was sick for days on end). Otherwise, I limit to 2 hours on weekends/vacation and 1.5 hours on school days--he gets 30 minutes at school, so it is still 2 hours. I believe this would not have been possible without the interventions we did with the immune system. But initially, it was lower than this, maybe 30 min a day. You just need to keep reminding him of the cumulative affect. e.g. 2 hours with no reaction one day, doesn't mean he can always do that! I am glad you are moving straight to the LCD. In a way I hope the reaction if any is immediate, because you can much better assess his limits than with a cumulative effect, especially since for us it was often delayed until that evening. So, ideally 30 min/day everyother day for a week, then 30 min/day, then 45 min/day....I am convinced that the type of game will make a difference for most--e.g. whether you are effectively reintroducing flicker vs just graphics. If you find a level that works, then later he reacts, then just do the osteopath or eliminate for a few days, and start at a lower level. Claire

Hi Frank, Which of Houston N's enzymes are you using? I use Zyne Prime for fats/carbos and my son was using AFP Peptizade for proteins. He recently showed Vit E deficiency, which I read can be associated with poor fat metabolism (I have a Vit E def--which didn't resolve with supplementation) so I recently added Zyne Prime for him also. He also just showed low in molybdenum, which affects sulfation/salicylates, but he rarely eats fruits these days (due to changes from known sensitivity to apples and bananas) so I didn't supplement. I have heard no-fenol is good at killing yeast (digests their hard outer layer), so I want to try it, but want to wait for vacation in Feb to avoid die-off reactions. After 3 months of the Peptizade, he still had new vitamin deficiencies, so I still think he has absorption issues, unfortunately. Oddly, we were supplementing all 4 of the things he is showing deficient in! Bummer. Maybe it is the ongoing yeast issue. Claire

Evangelia, Sorry I didn't respond, I remember reading this right as my son was really sick. I just ordered some amino acids. Caz posted on these if you find her old posts. Pfeiffer said for us to just supplement--they didn't see the need to test, how interesting. (we always test first). To all, here is an EXCELLENT article on low glutathione levels common in kids with autism, so they don't detox well. I believe this commonly applies to tic syndromes also. http://www.ewg.org/reports/autism/execsumm.php Thanks to the friend that sent this to me! Claire

Hi Chris, I hope you keep doing a sort of diary--even if it is just posting here. For example what you ate that day, how your tics were on a level from 1 to 10. It will help us and you spot things. Over time your posts will be an inspiration to other teens not knowing what to do. If you are doing supplements, I would make sure you also get the minimum daily amount of calcium and magnesium and zinc. Claire

Hi efgh, I just use a gluten free bread mix. I have no recipes for bread, but as Alison said, the bread makers come with them. I know BHT is big in breads. I would think that a bakery bread wouldn't have preservatives. Alison, Gluten sensitivity is an odd thing. It can affect people immediately or over the longer term. Minimally, I think it can inflame the intestines and interfere with absorption of nutrients. I really felt the Betty Crocker toffee bar recipe with that gluten free flour was out of this world (toffee/chocolate chip 'blondie). Claire

Great Smokies elemental analysis www.gsdl.com will test for magnesium along with some metals. www.spectracell.com will test for a whole assortment of vitamins, to uncover deficiencies. Both are blood tests. Spectracell doesn't require a doctor signature. You can go to both sites and call for more info. As for vitamins beyond Bonnies, I found needs to be much cheaper than retail but with quality vitamins. (800) 634-1380 Claire

Congrats Marina, I have been anxious to hear more from you, this is great news. I am soooo happy to hear you are seeing 80-90% improvement!! Good luck going through the next steps. I hope Matt does credit the screens over time. I know it took time for my son to totally accept the correlation too. If you had the funds/insurance, you could ask a neurologist to do a sleep deprived stroboscope test on him--I am sure that that would show up. Maybe you should try moving to an LCD screen right away, then you and Matt are both rooting for the same thing--the tics to stay away. But as I have mentioned (and Chemar also) the type of game does matter and the LCD generally doesn't mean unlimited use--at least until other issues are resolved. Of course the other option is to go back to unlimited screens for a couple of weeks so that he can see them return full force by then. What I get wary of is a simple trial--for some it sets them off for a week, for others, it is like an allergy bucket where it needs to build up before setting off tics. My tag line here is always: Once you ID photosensitivity, I recommend testing for metals and pyroluria (I forgot if you did this), yeast and vitamin deficiencies. We found that it doesn't improve unless the immune system is repaired. This saves you/him from a life of just avoiding triggers. I suspect that this new baseline will let you finetune more over time and identify secondary triggers--if Matt continues to cooperate. Have you ever asked him: If he did believe it, would he choose the screens and ticcing over no screens/restrictions and 80-90% reduction in ticcing? Just curious! By the way, is the basketball game outdoors, or in a gym with flourescent lights? Claire

Chris, So I count 6 days on the no screens, Jan 30 pm to Feb 5 pm Sorry you are so frustrated, but don't you notice that you say your eye rolling tic came back on the very day(s) you had computer exposure again? Even 10 minutes would set off my son for a week, no exaggeration. Some people are more sensitive than others. Especially when you are off it for a bit--the reaction can be even more intense upon renewed exposure. The improvement in the body tics does send a message...I know how hard it must be to wait longer, but I wouldn't rule it out from what you described. Having said this, your self-discipline this week was impressive. Please now pay close attention reintroducing them to see by the end of the week how you are doing compared to today. E.g. count the frequency and note the type and intensity. That will help you gauge how big a factor this is. My next recommendation would be to check out food sensitivities is the next big thing, but you need a doctor to test for which ones you are sensitive too. I recommend www.elisaact.com for a food sensitivity test. Milk, corn and wheat are very common. Also artificial colors/ingredients can be triggers. I will let others chime in on supplements... Claire