Claire

deleted by Claire

deleted by Claire

deleted by Claire

deleted by Claire

Jennifer, Thank you so much for the details. I will print out the bodybio information and bring it to my son's new doctor on our first visit. I hope he is willing to try their tests--I always assume that doctor's have their own approaches that they feel are sufficient. I don't mind the costs of test at all, it would be worth manifold times that should we determine what is right. It is tough stopping the bodybio oil, but he doesn't want anything interfering with the tests. That is such wonderful news about your son and him saying that his habits are gone. You are fortunate to have uncovered this path for him--obviously your efforts were right on target. I hope we are so lucky, and that our doctor is supportive as yours is. Claire

efgh, I would be really careful about taking away too much without making sure there is an issue first. My son is REALLY down about no wheat--even though we have good tasting alternatives, he just feels so deprived. This is why I waited until we knew for sure before acting on it--after I saw what happened to his attitude when I tested him for no wheat for 3 days in November. Unless your child doesn't notice. For the salicytes, I just won't offer the strawberries and grapefruit juice for a week. The rest he doesn't have anyway. This has been a difficult week. I read that wheat allergies cause digestive issues, and I didn't think he had any. Now I asked him and he said he has diarrhea at least every other day and has for some time now. He said he told me (I thought it was just that day that he mentioned it). Odd it hasn't gone away yet. It makes me wonder what nutrients he hasn't been getting--due to the diarrhea. I may delete this later--kind of personal. So please don't copy and quote this anyone--I know that isn't a habit here, but I won't post on my son on the braintalk board because of how often it happened. Claire

Hi KPD, Do you mind if I ask if your son has any OCD tendencies also? I am trying to better understand(unscientifically, I realize) whether this is an OCD/compulsive tendency vs a TS tendency. I find this fascinating. I wonder what will happen when they grow up and get married--not that anything stays the same... What do you mean he doesn't stick with natural remedies? That he refuses to take vitamin supplements? Is Tenex a prescription drug? Interesting that he is willing to do that instead--unless maybe it is only one capsule a day vs many. Claire

efgh, I understand about spacing restrictions, I am doing the same with my son. My sons fears, which started with his strep throat (I still think it was strep due to the notice from school and my own symptoms--he said they barely touched the back of his throat with the swab--no gagging) improved incredibly with the medicine. He still gets smaller ones occasionally--of the same thing. I know that kids have fears, but they were worse on the visit with wall to wall carpeting--and we even stayed in the same room, so it wasn't a 'strange' place--he loves travel--which makes me think that environmental/allergy modifications may offer him relief. Work starts tomorrow again, so I won't be posting so much! Claire

Hi Jean and efgh, Jean--Jennifer was the person I got that info from re heavy metal toxicity and fatty acids--I think she posted her comments on this thread (there are so many threads here). efgh/Jean We will meet with our own environmental medicine doctor next week, and I will let you know what he says Sheila Rogers pointed me to this DAN list via email and I cross referenced it with the aaem list from a Latitudes article. http://www.aaem.com/referable_physicians.htm The DAN list is great because it lists the areas each doctor is competent in, ie allergies and fatty acids, feingold. Don't worry about the autism part--these doctors are generalist. I wanted an MD because an MD is basically unlimited in what tests they can order compared to some of the others. DAN list www.autism.com/ari. Click on DAN on the left, then practioner list. Here is a random example from the DAN list: Specialties: Psychiatry, Neuro/Child Psychology, Nutrition Vitamin/mineral supplementation: Yes Essential fatty acids: Yes Gluten and casein-free diet: Yes Diet avoiding food allergens and yeast: Yes Feingold diet: Digestive aids/Probiotics: Yes Colostrum: Transfer Factor: Yes Antifungal pharmaceuticals and nutriceuticals: Yes Secretin: Heavy metal detoxification: Yes IVIG: Antiviral medications: efgh, yes I read braintalk also, that is a good thread. I am delighted to hear that you are seeing some results from Feingold and the flax oil. I was trying to eliminate the salicytes today--but he had friends over and they all wanted apples. Did you ever start the no TV and what did it do? My son just now fell asleep. Always 1 hour from when he lies down lately. Bummer. School will start again Monday--maybe exhaustion will bring easier sleep. At least he sleeps in, he never used to be able to do so. The first day back will be tough--his internal clock is way off. Claire

Cravings can indicate allergy--that was my clue to identifying my son's allergy to wheat. However, I personally think it is appropriate to do some testing (RAST or other) to make sure. I would hate to think of taking something away permanently without being sure. Of course you can always remove it, then reintroduce it to see what happens. Claire

Hi Sara, Welcome to the board (I am pretty new also). I don't know about magnets, but I am sure that you can find them on the internet. If not, I believe that another mother I know sells them through Global Wellness I think--they have a website. I know that some people's practioners have given them magnetic things also. My son has braces and man have they been driving him nuts lately. He can't touch a metal spoon to his mouth (he uses plastic). And if I scrape metal together he says he can 'taste' the metal in his mouth. I am wondering whether magnets would make it worse (all his metal) or help, so I won't mess with it without guidance. Claire

Hi Chemar, Thanks a million. Well, why am I not so surprised to hear this from you? Our son's have some overlap, but fortunately for me, you have a 4 year headstart with a successful track record to help guide me... I wonder if it is cooler near the floor--I keep reading that heat is an issue. Also, maybe the hard surface is somehow stabilizing to them. I offered to get him a hard futon today, but he is not interested. Maybe later... I believe that you mentioned chlorine as an issue (and I know it shows on Sheila Roger's tic trigger list). Does this make swimming in chlorinated pools a potential issue? We don't do it very often, I just wondered if it might be something to watch for. I know the air around an indoor pool can make me sick. By the way, the EM doctor we are seeing happens to have a primary background in psychiatry, so that will should be helpful for 5HTP/St. John's Wort etc discussion. Claire

Jean, We are in sync! I am having my son tested next week for fatty acids and heavy metal toxicity. After all the intense debate on the braintalk board on Omega3 vs Omega 6, and AA etc...I got pretty nervous. I have to believe it is individual, and Jennifer found the right balance for her son. What she made me realize was that it isn't just a matter of adding flaxseed oil--rather the balance is key. I am going to move my son away from the salicytes now, ie the grapefruit juice and the strawberries, and see what happens. The artificial stuff is gone from his diet (well, I can't say what will happen at school, ugh). Claire

As of 2 weeks ago, my son wants to sleep on the floor. We have hardwood, and now I definitely must vacuum it daily (and mop at least every other day). I tried putting camping pads under a blanket for a time, but he never did like the cushions, and tonight I agreed to take them out again. So he sleeps both on and under a comforter on the hardwood floor. He still listens to the radio for 45 minutes to an hour before falling asleep--nothing has changed there. Maybe it is cooler there, or even less dusty than his mattress (I checked and had been mistaken, his new thicker mattress that we got doesn't have the dustmite covers). He says he 'just likes it harder--it is easier to sleep'. I even took out his bed and put his mattress right on the floor as an alternative, which he sits and reads on, but won't sleep on it. By the way, it is a nice quality mattress. Tomorrow I will suggest that he check out the super firm/hard ones, but I really doubt that will have an impact. He does use a pillow, and tonight I noticed he bundled up the top blanket under him a bit. Anyone have experience with this, or reactions to it? He is happy with it and he seems to be sleeping okay, so I won't force him to do otherwise--but just don't know what to think about it! Claire

I found an AAEM/DAN doctor today. DAN protocols are apparently leading the way for the type of neurological diagnostics some of us newbies are looking for, even though the initial focus was autism. We will see him next week and he said he will run a number of tests on my son, from fatty acids to RAST spectrums (with both IgE and IgG) to metal toxicity tests. We talked live on the phone and he was wonderful. He said depending on what we find, he may refer me elsewhere for follow-up. I am stopping the fatty acid supplementation I had just started my son on, so as not to mess up his tests. Here is a DAN link--remember, it isn't just for autism. You can look at each doctor and they say whether they handle fatty acids, Feingold, allergies, etc... http://autism.com/ari/ Claire

efgh, Yes, Riboflavin is supposed to help with photosensitivity (and excema). So are the Omega 6's, which is partly why I am using the bodybio oil balance that Jennifer mentioned with more 6's vs 3's. I just started yesterday. Claire

Irlen, visual tracking, neuro/biofeedback Visual Tracking We got back from my son's visual tracking test today. I mentioned that I was doing this in case his issues with rapid action were vision related. She said he uses his eye muscles improperly, where he doesn't move from short range focus to long range focus well. Also he "overcrosses" and focuses too closely. It is unclear to her whether this would impact his tracking of rapid movement, but it could cause stress and discomfort. He never complains though, and as I mentioned, he is performing multiple grades above grade level. He also can see just fine eyesight-wise. She said that reading glasses or vision exercises--computer-based and done at home, should help alot with'comfort' and prevent nearsightedness. I will need to pay him for it as a 'job'--she says they are very boring. I do want to test one first, it is Neuro/biofeedback. We stopped this 3 weeks ago. It is tough to explain, but I think that the protocols for kids with chronic tics (which I believed the doctor used) were not right for him--perhaps because I think his nervous system is relatively normal EXCEPT when he has computer exposure (and strep throat)?? Anyway, for whatever reason, it made him quite sleepy and he had a hard time concentrating--he, his teacher and I all noticed. I waited it out, but after 4 weeks, the issues with inattention (never a problem for him) were causing too much stress for him. I can't know anything for sure, but his attention started to improve again significantly after a week without it--during which time we did Dance Dance Revolution to encourage focus. I feel obliged to report on our experience, but I don't want to discourage others whose children may have a more chronic and daily issue, for whom neurofeedback could be very appropriate--as Dr. Othmer says: with a physician experienced with tics. Irlen He started using the blue Irlen overlay sheet today. He says it really reduces the 'glare' for him. For a kid who resists everything so much that I suggest lately (either part of his issue, or because this is normal for a healthy kid to hate so much fussing?), he really liked it. So thanks Sheila for encouraging this! I will keep you posted over time. His opthamologist knew a lot about Irlen and was pretty positive, though it was clear that her methods are really an alternative approach in some ways. She said there are even studies contrasting vision therapy with Irlen. Some similarities...certainly if eye exercises can create permanent change I am all for it. Claire

Chemar That is very encouraging about the 5HTP and mainstream doctors! I want to stabilize the additional fatty acids and B's I have started giving him (including riboflavin for light sensitivity and inositol, plus the other B's. Odd, it has some B6, and there is no zinc in the B complex to help with the B6 that FJ mentions. I will go from there. We have been remodeling inside our home since July, and after reading some of D. Rapp's book, I am concerned about all the things such as dust floating around our house (I sure notice it). His strong reaction to what I assume was our relative's carpeting (or possible mold?) last week (on another post I noted that he slept on the floor there) brought home the impact of his environment. We will get low-odor paint, and I would move out during the painting. My son is 10 and weighs 80 pounds. I wasn't worried about the photosensitivity for most children--it is just that my son is already photosensitive. Oddly, he doesn't wear sunglasses around his friends, just when he is with me. St. John's Wort sounds like a great fit for those times when he needs it. Claire

I just read in "Is this your child's world" by D. Rapp that switching to full spectrum bulbs in the classroom reduced ADHD by 33%!!! She is not big on fluorescent lights. Here is the cheapest source of these I found--I finally ordered them for the entire house today. It was not cheap. http://www.topbulb.com/find/prod_list.asp_...bCategory_E_445 Claire

Chemar, That is WONDERFUL to hear--and incredibly encouraging. By the way, I am reading D. Rapp's book "Is this your child's world" where she discusses provocative and neutralization. Is this what your homeopath did for your son? I get confused on homeopaths and environmental medicine doctors, as I mention on another thread. I really do want to pursue the food sensitivity and supplement angle, given that he has other issues such as excema and his version of photosensitivity that even the Irlen tester picked up on withouth flicker (but again none of the distortion issues). Do you think that after using 5HTP regularly, one would also have to wean them off--ie could there be a bounce effect? I keep waiting on this until I find a doctor--I have time during the holidays to search for one, but no one is around! Finally, I read on the herb link you gave that St. John's Wort can cause photosensitivity--given Taylor's photosensitivity anyway (and cataract problems with both Grandmothers), I don't think he is a candidate for it unfortunately. http://community.healthgate.com/GetContent...d=/tnp/pg000919 "Finally, a report suggests that regular use of St. John's wort might also increase the risk of sun-induced cataracts.50 While this is preliminary information, it may make sense to wear sunglasses when outdoors if you are taking this herb on a long-term basis." Claire

Ha MC re dreams--I do think the subconscious knows a lot! Thanks for the info on the full spectrum RAST test--I agree it is worth it--otherwise it is a guessing game. I 'guessed' at 5 and got 2 right...it makes me wonder what else he is allergic too. Plus I never tested him for dustmites and I am 99.9% sure on that one (he is also). Now I wonder about pollens and molds. He had an intense reaction to his grandmother's house last week and I assumed it was the carpeting--maybe the synthetic fibers or some cleaner (he was sleeping on the floor there-ugh), but I suppose it could have been mold also. It aggravated all his neurological issues. It makes me realize how lucky we were to pull up all of our own carpets before he was born, due to my own dustmite allergies. I do want to get a full spectrum of things tested--trying to figure out if I go to an AAEM environmental medicine doctor or a homeopath for that. I hadn't heard of naturopathic. This info is so overwhelming sometimes. I think the provocation/neutralization skin prick test is effective, however my son would flip due to the number of pricks involved. Thanks again, Claire

efgh/Chemar Chemar, yes re the friends! I don't think we see things that differently re the trigger avoidance. It is just that my son doesn't care about TV/computer, and what he reacts to are supplements and food restrictions ("why can't I have artificial colors and flavors like my friends do?", and 'no way am I taking a supplement'), so that is where I give him lots of latitude for fear of messing him up emotiionally. While your son seems to be the opposite. Though it is encouraging to think that with age they do make the 'right' choices for themselves... Chemar, what do you do as a parent when your son's OCD 'waxes'? I mean aside from the supplements, how do you help him handle the fears and urges at the time? My son is either too afraid to deal with new methods when he is in the middle of them, or to bored to talk about it when he is well. I have read a bit on behavior cognitive therapy. Distraction and exercise seem to be our best bets. efgh, given the ticcing during reading, you might want to spend $30 on the Irlen colored overlays to see if they help. It is just possible that your son has the same light sensitivity as mine. If not, it isn't a huge investment. You put them over the reading page and see if one feels better than the other (or he prefers no overlay at all). Then let him read and see if the tics are reduced. http://www.irlen.com/downloads/store/color...y_orderform.doc Claire

efgh, It is a brand called Gluten-Free Pantry, and I had it recommended to me multiple times for good flavor. It has potato starch, corn meal, brown and white rice flour and xantham gum (xantham gum replaces the gluten for the stickiness needed for a bread, as I understand it). Xantham gum is sold separately in health food stores also--it isn't 'artificial' and it feels like a flour. "Pamela's Pancakes" are the same. All natural ingredients--we bought it at the huge "Whole Foods" health food grocery chain which screens for such things. Regardless of wheat allergies, I think it is good to rotate grains. By the way, good for you for making a decision on the TV in a way that won't traumatize your son. I recommend initially to be there with him during what would have been his normal TV time as he adjusts--this way it has the potential to end up being a net positive for him, though tough on the parent. Or having something fun for him to do in the same room while you make dinner and/or chat. We got playdoh (yes at age 10), pipe cleaners and games and keep quite busy. The comic books and the CD player kept me sane and is his downtime. Of all things, his self-directed physical activity (exercise) makes the biggest difference. We have some remodeling work going on, but normally the garage is complete empty for this purpose during the winter months. It is amazing what they can do in there even in the evenings. (hockey, skate, skateboard tricks, soccer, ball play). Digging in the yard works well also. I will be very interested in hearing what happens--I really do hope it makes a difference for him. Because then you can justify the non-flicker monitor. Although I think my son just doesn't care much anymore. Remember, it took a week for my son's tics to clear after no exposure--I can't imagine it going longer than 2 weeks. Yes, they need lots of attention at this age--probably moreso than many kids because of their nervous systems. Our biggest blessing is his finally having a best friend who loves outdoor play, rain or shine. He is over now. My son is so 'even' (emotionally balanced) after a day playing outside with this child. It took us until a year ago to find some one like this. Yesterday they intentionally climbed in a dirt pile in the rain--and the friend's parents let them! Claire

efgh Well, if the weight loss was from fever, that makes a big difference. Yes I absolutely think reduced carbs and less junk lead to lower weight, in fact I think it is the high carb diets that lead to weight gain for many children and adults--not all, but many of us--including me, don't do well with lots of carbs. I don't even need to watch my weight when I have reduced carbs, and naturally go for more veggies then. My 10.3 year old son is about 80 pounds and 56 inches now. But he is slim--no extra fat and extremely fit--he inherited his dad's muscular build--we can already tell. I thought the no wheat would lower his carbs--not so sure. I am probably overcompensating with good tasting grains. We bought a bread machine last night and made a wheat-free bread from a mix which is delicious! We found a wheat-free pancake mix also. We found a reasonable corn flour pizza crust. I couldn't taste the difference in the pasta, but he did, so I will try it again. There are a ton of 'yucky' brands out there. We were lucky to run into a family with a child who had tested many of them to find the best tasting ones. We definitely invested a lot of money and time looking for the right brands. I need to figure out how to do breading and buns--he likes his proteins better that way. His dad got him afraid to eat beef now though, with the mad cow disease. Though I guess grain/grass fed cows are okay. Claire

efgh I probably differ from others here in that I see no harm in having a 'no TV' week or two. But I too think it is best not to associate it with the tics if at all possible, and to make an unusual effort to do other fun things. Crafts, family cards/games, a family walk. And I would honor the same rule myself re TV--to show support. The Berenstein Bears did this in a book. The focus was family and hobbies. You can set up extra playdates on weekends and take them somewhere special. It can be a positive week. If you just take away the TV--it does feel like punishment. For some, the 'relaxing' part may be the reason for the tics. For others, it is the TV itself. How will you know without checking? Once you KNOW, then you can make your own tough decisions that ONLY you as a parent can decide for your child. I believe that our decision did not harm my son emotionally (he was missing school from the awful headaches from TV, it just had to stop). Maybe it isn't a trigger, then you will know you won't have to worry about it anymore! Our computer DID go on the blink, and it was the perfect chance to see what happened. My son didn't complain because he knew it was broken. It turned out well, because it broke the computer habit and he enjoyed the extra attention. Then I got him comic books (Calvin and Hobbes and Garfield) and a CD player for relaxation time--he honestly doesn't even miss it. I know this because he knows he can have it regularly now with the LCD and he NEVER asks for it. I have to remind him to even play Dance Dance Revolution with me occasionally. As for weight loss, I doubt it is flaxseed oil, but it IS worth checking with a doctor to see what is going on. Not that his weight is bad, but just to make sure. Claire