Claire

Hi Jennifer, thanks. I noticed you said you hadn't done the 5htp yet. Do you mind noting why? (I didn't get why it being higher up the protein chain or whatever was a factor--maybe I misunderstood.) I couldn't find any bad side effects listed, but I only did it once and stopped--made me too nervous without a doctor--Chemar did it under a doctor's watch. Claire

MC, you might want to check the other "food allergy" thread running right now. I am going through the same search. Some doctors think food allergies are uncontrollable. Some thing a year without the food might let the child outgrow them. Others try techniques to get them past them. I am going to investigate various methods such an neuromodulation and environmental medicine approaches of food rotation, and will post what I find. But it will take me time to find doctors and see what works and doesn't work for my son. I too am hopeful that this may bring positive results. How did your doctor know what to test for with the RAST test? We asked for very specific foods--you sound like you tested for a spectrum of them. Claire

Ronna/Nancy Ronna Probiotics should be given at least 2 hours after the antibiotics. My understanding is that otherwise the antibiotics will just kill this healthy bacteria also. 2-3 times a day. My son hates pills, so we dumped the contents into an ounce or two of water and he drank the mixture with a straw. We got ours at whole foods, and they were labeled ACTIVE, so we knew they were 'live'. Why is your son on antibiotics for PANDAS on an ongoing basis? Is it a prophylatic dose to prevent more strep, or is it to clear up a remnant infection??? Nancy, thanks for the explanation, I did something similar with my son for something else and he was very resistant. I may need to bribe him to try this--though the thought of having wheat again is very enticing! It is hard to know which way will work--thus anecdotal success becomes important. Again, I have a list of practioners to call. Claire

Merry Christmas! I can't believe I got on my husband's computer to check in while out of town! But if you remember from one of my first posts, I had this gut feeling that my son was allergic to wheat. He has excema and has had it for many months now. The remarkable thing is that the dermatologist 'expert' just gave him antiobitics and a cream. It took me doing internet research to uncover that 80% of childhood excema is the result of a food allergy. The most common ones were eggs, milk, peanuts, something else, and less common but still a consideration was wheat. So I had him take a RAST blood test last week, for candidas (which came out negative) and for all of the above foods. It turns out he was HIGHLY allergy to both wheat and peanuts (he doesn't have peanuts very often--doesn't really like them). I learned of it by phone, so I don't have the numbers, but normal is .035 oe .35,and his reading was 5.3! So we found this out via phone at the airport Tuesday, so Tuesday he still had wheat. We share a room on this visit and the first night I could hear him scratching 1/2 the night. Then as of yesterday he had no wheat and last night I didn't hear him scratch once all night (I am a very light sleeper--I did wake up for a small amount of his teeth grinding, but it seemed better too--who knows, I will have the whole week to observe). What a blessing to have this internet or I wouldn't have known to check, and to have an ENT doctor who trusts me enough to order the test based on my own instincts. Question 1: I am a bit curious to see if I will notices other things besides the excema--maybe even better sleep patterns, if we are really lucky. Does anyone hear know if food allergies (other than toxic reactions to artificial colors) can have other neurological side effects? Question 2: It would be a real pain to go through life with a wheat allergy (his favorite food)--though already I have found a decent non-wheat pizza crust and pancake mix.I do plan to look further into neuromodulation (I found providers in my area). So does anyone know of other methods to investigate to get rid of allergies should this fail? I have heard to avoid the food for a year and perhaps the child will just outgrow it. I have heard to avoid the food for a month and then try to rotate it in every 4 days. I think the environmental doctors that follow the Dorothy Rapp approaches may have techniques, and I will try to contact them. Thanks, and by the way, I really wanted to be wrong on this instinct about wheat. I will take being wrong anyday over yet another restriction for my son--he said he would take computer restriction over a wheat restriction anyday! I can only hope that 1) it's elimination will help more than just the excema; and 2) that he either outgrows it or we find the path for him here that works. He is hopeful, since he is currently satisfied with the computer compromise that we found worked for him. I may not be able to check in for a few days, have a great holiday! Claire

efgh, Jennifer Jennifer, I linked this ACN thread to Braintalk where they are discussing fatty acid proportions (under the gluten sensitivity thread) --I hope you don't mind! One person seemed to be adament that we get enough Omega 6's and others think we need more, so I thought your insights from Dr. Kane might further the discussion. It is a bit scary to me, that even for food supplements, the ratio can be so key! Jennifer, we are at the same point--no tics, but sleep issues and moods--but his 'mood' is fears. The fears never totally went away after his last bout of tonsilitis. However, the sleep issues have been around since he was a baby. Other babies sleep ave. of 16 hour days--it took work to get him to have 12. Plus he frequently wakes up in the middle of the night. efgh, my son never had vocal tics, just facial tics (and only once a shoulder tic). If your son reacts during TV then yes I do recommend the LCD monitor, set to a lower brightness level, viewed only in a well-lit room where he sits across the room from it. I would just check the return policy, it took us a full week to notice improvement. If you buy the computer/TV monitor I posted on the other thread, it won't go to waste regardless--they are great computer monitors anyway--soon they will all be LCD. We leave in 2 hours, by all. Merry Christmas again! Claire

Hi Jean, I have read that 30% of boys get childhood transient tics. That is 20% of all kids get them, but 2x as many boys get them as girls. My son had tics for 2 months before we figured out their was a direct cause--this was just before his 8th birthday. Since then, he tends to go 6 months with no tics, then he gets exposed to TV and gets tics for a week, then another 6 months. He probably wouldn't have them at all anymore since we know the trigger, but we do experiment occasionally. He is now 10. Actually, as I think of some of your posts, they do have some similarities, don't they? So we should keep eachother posted on what works! Claire

Lorene, are you saying you know a doctor who put Tourette's into remission through non-pharmaceutical methods? What was his approach?

Jean/efgh efgh, sorry I don't have the website--just the number, and I lost my catalog (they send them quarterly). I am sure they can give it to you over the phone. As for killing the dust mites by washing, I only use warm water and mild soap, but what my allergist said was the key was to put it in a HOT dryer for 1 hour--that's what kills them. So I make sure things are bone dry and hot, and I guarantee you they wear out faster that way! I wash his comforter and sheets the same way, and the stuffed animals, when I used to do them, so we limited the number of animals out so they didn't get too battered up. I still haven't gotten the bodybio oil, I was late in ordering (work deadlines til midnight for weeks), and it was supposed to come on Friday. I haven't even ordered the full spectrum bulbs yet, but we have a couple in his room and bathroom at least. Jean, My son only got tics from computer/TV (ie he doesn't have Tourette's, but I came here looking for insight, and some of the compulsivity issues that Jennifer and Chemar mention can apply to my son--to a lessor degree, but still, he would be happier without them. Plus some fears and tough time getting to sleep--e definitely has a direct strep/tonsilitis reaction in terms of fears. Do I think some of the alternative approaches here to stabilizing the neurological system and building up his immune system will help him in general. But back when he was ticcing, before I really figured out the TV/computer correlation, yes he did tick more during soccer and during running. Sounds like you have noticed the same thing. I never understood that one--really I hadn't a clue-it was counter-intuitive to me. We did it anyway because I just couldn't imagine it actually being bad for him in the end, and sure enough, once the flickering computer/TV exposure was gone (it took a full week after each new exposure for all the tics to clear), nothing else was enough to trigger any tics. Digging in the dirt wasn't a problem, and nor was Dance Dance Revolution (on an LCD monitor)--which I discuss on the computer thread in one of my last posts, so I won't repeat it here. Maybe because he was so focused during the time. I just can't speak highly enough of that game for focus (that really does carry over at school), reading/tracking skills, gross motor coordination, exercise/aerobics and non-stop fun. We started when he was 7. By the way, he tried watch a plasma TV screen (no flicker, they are like LCD's) the other night at a friends house, and he had a small tic the next day--it didn't last more than a day though. It was a skateboarding video and the screen was HUGE--we only use 15" LCD screens from across the room, so it must have been the content (rapid action) on the bigger screen. As you know, we avoid rapid action stuff. Claire ps, I thought I was supposed to fly out today, but it turns out it is tomorrow.

Jean/efgh efgh, as Jean says, unless dust (really it's the dustmites) are a problem for your son, most of this won't apply. The allergy product company I use is at 800-522-1448. You can get a free catalog from them. They have dustmite protectors for the mattresses also--they say to vacuum them, but I wash them. I have most of the other things Jean mentioned also--especially important are the dust mite pillow covers. Everything feels like cotton these days, not plastic, so it is totally comfortable. I wash the comforter, sheets, etc each week. When I get lazy/too busy, I notice my son getting stuffy, and then I wash everything and then next morning he has immediate improvement. I used to have a chronic cough from the dust for many years, but it is gone. If I visit someone with carpeting for a week, I notice my chest tightening up, and the cough comes back. When we did have carpeting, I had to vacuum it every night to be okay. Jean, Sorry to hear the antigen shots caused tics--good for you for paying attention, I don't blame you for stopping them! Re the Roomba, it is an automatic 'robot' vacuum. I am too busy to vacuum that often. You just turn it on in your child's room (or any room for that matter), and it vacuums it for you. They now have a deluxe version where there is also a remote control for tricky spots, and two virtual walls to . It works great--you just must keep things picked up off the floor of course, as with a normal vacuum. For details, please look here: http://www.roombavac.com/buyroomba/defaultB.asp Finally, I didn't mean an aerobics class, I meant general aerobic exercise. For my son it was running (yes we started running when he was 6 for this, with rewards), or soccer, or basketball. I noticed a dramatic difference both in his tolerance for allergy triggers, and a reduction in colds. In the summer we found a summer camp with biking and hiking--he has evolved from a child who was more 'academic' to a fit and active sports enthusiast. He holds his own very well. I sometimes wonder whether I might have ended up with an asthma diagnosis myself, but for the fact that I was so active my whole life--the doctor said I had 50% more lung capacity than the average woman. Maybe without that extra capacity (which I believe is enhanced with aerobic exercise--ask your doctor about this), I might have ended up differently. Of course some people have exercise induced asthma, but this shouldn't stop them from finding the right level for them--I know an avid runner with Ex induced asthma. Claire

When you speak of shots causing problems, do you mean the antigen shots (where they inject small amounts of the things they are allergic to?), or shots of Claritin or some other medicine? I have a ton of allergies (though tics aren't my issue), and I take antigen shots at home and have been for 24 years now. I have hardwood floors and use a HEPA air filter. And no pets. I read that childhood asthma would go down by 40% if folks didn't have pets. Easier said than done when you love an existing one-- My son started to get bad allergies and colds a lot (his allergies were so bad I would think he had a cold some mornings!) and it improved drastically when he started to get more aerobic exercise. Plus I wash his entire bedding weekly, and used to do the same with those dusty stuffed animals when he slept with them. That clearly up the morning stuffiness. Finally, I bought a Roomba auto-vacuum and vacuum his room every other day. We only have leather couches--I read fabric couches are a dust mite haven and get all the dust-mite proof pillow covers. It has made a huge difference for me, and has helped him also, though he isn't nearly as sensitive as I am. Neither of us has asthma, however, I used to think that if I weren't so committed to aerobics and minimizing dust, that that might have been my path. I also refused to use those steroid inhalers during bronchitis--for both of us. Claire

http://12.31.13.115/HealthNews/reuters/New...y0123200322.htm "Television and computer screens update images many times a second. While we may not be conscious of this "screen flicker," new research suggests that certain regions of our brains register these tiny image alterations. ...And even people without epilepsy may experience problems as a result of screen flicker, Krolak-Salmon and Henaff continued. "Computer screen flicker, when its frequency is low, may induce headache, eyestrain and glare," they explained, especially in people who are prone to headaches. Previous research has suggested that people have less discomfort with higher frequencies--such as 100Hz--but most televisions in France flicker at around 50Hz, and computer screens at 60Hz to 85Hz, the authors explained. ... "We do not think that people watching a computer screen all day long have a real health risk," they said. "However, photosensitive epileptic patients and people subject to migraines must be careful." The authors found that patients showed increased brain activity when exposed to screen flicker in regions of the brain involved in processing visual information, indicating that portions of their brains were "seeing" screen flicker. ----- So, people with migraines, eh? Not just epilepsy...It also says that Plasma screens have no flicker, I was happy to hear it! -Claire

efgh/all efgh Nice input on allergies--that makes sense that they would shift--I will keep that in mind. I didn't know they could do skin tests for foods? My allergist doesn't--but he is an ENT (ear nose throat) doctor. So we did the RAST test, as you know. As for the artificial stuff--easy to cut out when you have stores like Whole Foods that do all the legwork to only put 'safe' products on the shelf. The tough part is events (basketball games, school gingerbread houses...) where the child doesn't want to feel different. By the way, all, I head out Monday am for vacation, I will check in before I go, but so I don't forget: Merry Christmas/Happy New Year/Happy Holidays to you all!! Claire

Jennifer, That was quite a wonderful post. I feel like we should have a new thread called 'building up the immune system' that leads with that post, however, I am not big on quoting other people, since I know some (including me) may not want a permanent record. If you have a chance to do this, I think it would be great. My son basically only drinks 1% milk and water, and has since he was young. Oh yes, and fresh squeezed grapefruit juice/carrot juice/broccoli juice every couple of days. Juicing is the best way--almost the only way-- to get veggies in him. Fruits are much easier. Since we have been vigilant on transfats/partially hydrogenated oils for a couple of years now, it turns out that those same companies that don't use them tend not to use preservatives. We don't have candie/sweets at home, though I can't help the school parties. We have always used whole grains. I think my son had a lot of antibiotics--ugh--his colds didn't turn into ear infections, but to croupe or bronchitis. He got a candidas test with the RAST test--we should hear the results next week. Since they only withdrew blood once, I didn't feel too badly checking it out. I am looking into probiotics--I know that Chemar likes these, and my ENT doctor takes them himself. You didn't mention them in your post--aren't they supposed to help build a healthy immune system also? (If you mentioned them earlier, my apologies, I can't always keep track of who said what!). For others, here is a link on probiotics http://www.wholefoodsmarket.com/healthinfo...cidophilus.html At the first sign of a cold, I give my son echinacea. All I can say is that he only had minor sniffles for a couple of days this year. (Strep/tonsilitis was a different matter) I just read on a site that Chemar provided great input on echinecea http://community.healthgate.com/GetContent...d=/tnp/pg000496 Amazing--in Germany, echinacea is the top cold remedy! efgh, Well, the same site above lists a on St. John's Wort did say there was a risk of photosensitivity and potential issues with cataracts at high doses. I wouldn't give a high does, but since my son already has some of this, I am holding off until I learn more .http://community.healthgate.com/GetContent.asp?siteid=iHerb&docid=/tnp/pg000919 This link from Chemar is great for a lot of your questions efgh http://www.iherb.com/hs.html Jennifer, when you have time, I would love to hear about your trail mix and concoction once a cold starts. My husband and I did the Atkins diet to lose 5-10 pounds (it worked), and since then we have lots of nuts around. After reading this board, I do my shopping at Whole foods and buy organic items as much as possible. Thanks Jennifer! Claire

efgh, There you go, what a great idea! If the issue is how they pasteurize the milk (vs loss of vitamins from heating), this should solve the problem! I wish I had found this site when my son was 8. He is unusually tied to certain food tastes. If I do this, it would need to be very gradual. Of course we are waiting for the RAST blood test on allergies to milk, peanuts, wheat, and eggs for his excema. I really hope he doesn't have them--what a hassle. By the way, have you seen any improvement in your child since you started all of this? Gloria

Hi Laura, If you will look through the archive threads of this site, you will find a lot of information on diet--both from foods that may be triggers, and vitamin supplements and fatty acid supplements. Their is a particular diet that some here have tried with good success--the Feingold diet www.feingold.org It eliminates artificial colors/flavors, preservatives, and salicytes.. However, that really is only a portion of what people here have found helpful. Some have issues with corn syrup, etc... Many here have found a lot of success--some of their children have barely any tics now--another good consolidated source of information is to order the Latitudes archive newsletters. They don't necessarily have a detailed plan, but they interview doctors with experience in non-pharmaceutical methods to deal with tics and tourettes (and other neurological issues--e.g. ocd, autism) and from there you can determine which path to investigate more. I can't underestimate the wealth of knowledge just reading through each thread on this page. Good luck to you and your child. Claire

Jennifer, what steps do you consider to be building up your childs immune system, besides the fatty acids? The NMT? Which homeopathic treatments? I know that my son used to get sick a lot, and now that he is more active--he gets lots of exercise, it seems to make a difference. I notice that too much homework is almost a sure guarantee that he will get sick. His teacher last year had 4 hrs of standardized testing a day, and asked them to memorize all their states (on a blank map) and state capitals the same week. Of course he got sick! This year I will just ask her to give us his homework for that week a month in advance, so he can get a good night's sleep. Claire

efgh Whoops, I read her comment on another post, where Jennifer said that they processed corn syrup with petroleum. I had multiple threads open and once, so responded in the wrong place. I don't know where she said it. Claire ps keep us posted on your success with your homeopath...

Chemar, what is the Omega 6 to Omega 3 ratio in your NATROL EFA? Thanks, Claire

Agree that it sounds like text book OCD. First I would read some of the books on it--just to help you know this is 'normal' for ocd. Then if you go to the tourette's board here, there are lots of discussions on supplements that might help you. The books also have input on how to manage the behavior aspects, but wouldn't it be nice to reduce the urges in the first place. Good luck!

For anyone with a child with focus issues, I highly recommend Dance Dance Revolution--the dance pad game played on a playstation--where you dance to the arrows. It definitely makes a positive impact on my son's focus, plus it is great physical exercise for rainy days--I play it with him. Unfortunately, the new versions require the more expensive playstation 2. Otherwise, you can get set up for less than $100. We of course use an LCD monitor. If you get one, just remember to use the training mode (not game mode) and start very very easy--you can slow the song speed. Otherwise it would be very discouraging. Claire

Chemar/Jennifer Jennifer, I believe that you deal with some OCD tendencies in your child also, so if you have info on helpful supplements too, that would be great. Were the fatty acids most helpful for tics or did they help with the OCD type symptoms also. Thanks for the input on the bodybio oil with protein--I never read about that. Anybody have a child with irrational fears that were helped by certain supplements? Chemar, guess what? The 5HTP capsule was tiny and he wouldn't take it, so we dissolved the contents in a little bit of water. The taste really was okay! The St. John's worts drops (for the morning) taste like strong tea or alcohol to me--we will see how that goes. I am still worried about 50 mg at his weight though, since I don't know the proportions by weight. Claire

Chemar, I got the 5HTP small capsules and the St. John's wort (liquid). Can you suggest strengths for when my son is ready? He may be close, bribery in the works! With your qualified that I should see a doctor (I am working on this one very hard!!) He is 75 pounds and 10 years old. St. John's in the am, and 5HTP in the pm? Did the 5HTP make your son sleepy during the day? Any side effects from either. Remember, he doesn't have tics now, but sometimes he REALLY can't sleep and he has been having some fears lately--they didn't completely go away after his last bout with tonsilitis. ClairE

Chemar/efgh/Jennifer/Jean Thanks for the B info Chemar! It is in the B-complex chewable supplement that I started adding this week, so we shall see. Wow those B's sure are important. He went a long time without grinding his teeth but started up again lately. As for the braces, I won't even go there. But his bite was off (that can contribute to teeth grinding), so we didn't feel we had a choice. I will likely skip round 2 though! efgh/Jennifer/Jean I read more about Feinberg and now I 'get it' about tomatoes from the literature. It is the salicytes. Actually the Feingold elimination diet is MUCH easier than eliminating wheat. Only problem--no strawberries--and strawberry smoothies are my favorite place to put the oils! I finally connected with my only local aaem doctor today, but he has never heard of PANDAS. Bummer. Claire

Jennifer/EFGH The RAST test is a blood test where they take samples and test it against a specific food that you think may be an issue. I don't know much about them as I am researching this--even if they are less accurate than elimination, maybe they give a pointer? Not sure. Re the Raw milk, this is quite interesting. Unfortunately, I have a friend whose daughter (now 10) drank the contaminated Odwalla unpasteurized juice 7-8 years ago (whenever that awful event with multiple children occurred), and though she survived, she still has life-long learning issues from the high fever that lasted so many weeks. So given my son has a history of getting sick easily, I would be too afraid. Jennifer is right in that the source matters--but you know how it goes, if it happens to someone you know, it makes it more real. I am not putting down the idea, just reemphasizing Jennifer's comment to make sure you trust the source. Can someone explain casein? Jennifer, Are you still doing the chlorella, and have you noticed anything? I finally ordered the oil, it is so frustrating for work deadlines to interfere with my child's progress. He does get fears occasionally (since his last tonisilitis they didn't totally disappear), so I am trying to manage this. Though mentally I am trying to understand whether eliminating food triggers makes sense if the original cause was the tonsilitis? If anyone has insights here, I would appreciate it. His strep test came back negative, but it was going around his school, and he said they barely even swabbed his throat--he was happy about it cuz he hates that feeling, so it still could have been strep. Besides, one study I read said that other tonsil infections can cause PANDAS. I am emailing my ENT and family doctor to see if either of them are willing to run some tests to find out. He had a mercury filling when he was young, and he grinds his teeth at night, so I wonder if the mercury could be an issue. He got spacers for his braces yesterday, and his fears were worse last night, but I can't tell the correlation for sure of course, it never occurred to me to pay attention to that until Sheila and Chemar mentioned braces. Claire

So THAT is why corn syrup is bad, thanks. My son wanted a gingerbread house kit from the store. Oh my, corn syrup, colors number 4 to 1000, or so it seemed. He seems to respect that artificial colors are bad news. He also now 'gets' that chocolate keeps him awake. 2 days in a row he had chocolate milk when we were out in the late afternoon, and he was up forever. Actually a good thing in retrospect, because he noticed the change. I am hoping to do all my Dr. Rapp and Feingold reading over Christmas. We get the bodybio oil this week--next step to get it in him (smoothie time). I found chewable multi-vites and even chewable B supplements. Odd, FJ says B6 needs zinc, but none of the chewable 'balanced B's' seem to have much, if any. We aren't megadosing, but this children's vite has 200% of B's, plus sometimes I give him an extra B chewable. It is mostly for the Riboflavin for light sensitivity and excema. But B's supposedly help the nervous system. I may barter with him on 5HTP and St. John's wort later. Claire