Caryn

I know that the P5P is more easily absorbed. High doses of B6, whichever form you use, over time will deplete other B vitamins. You could get a good multivitamin (no iron or copper) and use the B6 vitamin of your choice. Amounts of zinc depend on zinc depletion levels of the person. Optimally, the person should have a test prior to supplementing, especially if you suspect they are very pyroluric. (Borderline test results are 11-20, high results are 20 and above) Severe cases of pyroluria need high, seemingly toxic doses of zinc. The health food stores sell zinc status as a way to measure depletion, but I don't know of anything to measure toxicity. Error on the side of caution, that is the best bet until you have the proper testing done. Two capsules of primrose oil a day should be fine, one in the morning and one at night. Caryn

Oh yes! and a host of other bad stuff. it has sodium benzoate-- the hyperactivity preservative and ascorbic acid is made from corn so is xanthan gum (but that doesn't seem to bother our guy.) I was using it regularly until another latitudes mom pointed it out. Caryn http://www.kirkmanlabs.com/products/fatty_..._S_Spec812.html

Amy, I know how you feel. I started on this road six months ago feeling completely overwhelmed and alone. My husband is supportive but I do the shopping. After my son made such terrific progress, my friends decided to give me a blog for my birthday-- LOL. Well, they wanted me to start posting the stuff I learned. I have created a modest amount of recipes; I like to post one a week. (Trust me there are a lot of bad ones that never see cyberspace!!!) I do gluten-free and corn-free meals. Some are also casein-free (but not always, as my son did not test allergic). I also follow feingold diet (we do include some foods with salicylates). I have a whole recipe section on my blog and also posts describing some of the commercial snack foods we eat. I would love comments and input from anyone else doing similar stuff. My eyes and ears are always open to new ideas and suggestions. If you'd like to check it out see: http://healthy-family.org and look on the right column for the links to recipes. BTW, anyone with good recipes, please send them to me! Caryn

Thanks Amy. We did coromega awhile too, but it has corn in it so we had to give it up. You could try nordic naturals. They have soft chewables that are fruit flavored. My boys love them and call them candy. LOL. Caryn

Sensitivity to light and sound is one of many symptoms of pyroluria, a double deficiency of B6 and zinc. Too many kryptopyrroles are produced in the blood and bind with B6 and zinc. They are excreted in the urine thus leaving the person deficient. It is hereditary. A simple urine test will determine if it is present. We have dealt with this in our family and have seen drastic improvements with added zinc. (Too much zinc could be toxic, so don't do it if you haven't been tested). Other symptoms include irritability, difficulty reading, white spots on nails, etc. There is a whole host of stuff. I wrote a piece about it on my blog. Seems to get a lot of traffic. http://healthy-family.org/caryn/63 Caryn

Hi everybody, I am a member of the Feingold Organization and we just received an email asking for nationwide help convincing candy manufacturers to take artificial colors and preservatives out of our kids' candy here in the States. There is a new study that was released last month in Southampton proving that sodium benzoate and azo dyes make ALL kids hyper, not just kids "predisposed" to ADHD. I have written about the study on my blog at: http://healthy-family.org/caryn/231 if anyone is interested in the specifics. Our Feingold representative has told us that in England they are removing these synthetic dyes and preservatives because the people are demanding it (not because of the law). We would like to see the same in the States. I don't want to completely double post, so if anyone here is interested in calling Mars, et al., please view my post in the ADHD section of ACN. Caryn

Hi everybody, I usually post in the Tics and Tourettes section. I am a member of the Feingold Organization and we just received an email asking for nationwide help convincing candy manufacturers to take artificial colors and preservatives out of our kids' candy here in the States. There is a new study that was released last month in Southampton proving that sodium benzoate and azo dyes make ALL kids hyper, not just kids "predisposed" to ADHD. I have written about the study on my blog at: http://healthy-family.org/caryn/231 if anyone is interested in the specifics. Our Feingold representative has told us that in England they are removing these synthetic dyes and preservatives because the people are demanding it (not because of the law). We would like to see the same in the States. Here is the contact info: from Shula Edelkind: "Last month a study published in England announced that a mixture of colorings and sodium benzoate affected the attention of normal children, pushing them about 10% toward the hyperactive end of the scale. In response, as I wrote in September's enewsletter, major supermarkets in England have been removing the synthetic colorings, flavorings, and preservatives from their store brands. Some of the big candy manufacturers, including Mars and Cadbury (Hershey) have also promised to do so. I suggested that we as consumers can call to ask these companies to take those additives out of the candy in America too. The first time I called each of the candy companies, they had no clue; they had never heard of the British study, and didn't know what to tell me. Apparently, thanks to all of you calling, their customer service representatives have been briefed on how to answer. If you feel you were not treated well when you called, or if you got answers similar to the ones I got (below) go ahead - try again. This time you will be ready. The second time I called Mars, a well-prepared gentleman told me that the company has no plans to change their candy in the US. They were only doing it in the UK because they are being forced by the government. I told him that no, the government was allowing the manufacturers to make their own choices, and were not mandating the change - it is the people who were asking for the change. Then he said that in the US they are going by FDA guidelines that said that the colorings are still safe, and that anyway the study was "inconclusive." I said that it was considered conclusive enough for them to change the candy composition in the UK, and weren't American children worth the same consideration? He said that many of the additives tested are not even used in the US. I read him the names ... yellow #5, #6, red #40 are all used in foods here, as well as sodium benzoate. He said that the study was not real strong because they were using a mixture and the results were "weak." I said that they used a mixture because that is what the kids got in their food - a mixture, and of course the results did not show that the mixture made the kids hyperactive -- it was not intended to do so. If the kids had been sensitive enough to become diagnosed as hyperactive from the little bit of coloring given them, they would have already had that diagnosis. Rather, the study showed that the additives measurably damaged the attention ability of normal kids, so actually that was a very important study. After all, it's not an all or nothing situation -- there is a continuum of sensitivity to additives. When he could find his tongue, he told me that it was not an absolute decision, and they are still considering options. I told him I would like my comment to be registered, as a mom of children who like candy, and who prefer their candy not to have artificial colorings - and after all, there are so many good natural colorings available now. He took my name and zip code. Guess what -- a few days later, I received a coupon for $3 for candy. I wonder what I can do with that? For those of you who have not yet called, and for those of you who wish to try again, here is the contact info: MARS: (M&M, Milky Way, Snickers, Twix, Starburst.....) Mars, Inc. Corporate, in VA hours: 8:30 - 5 Eastern Time 1-703-821-4900 1-800-551-0702 1-703-448-9678 FAX CADBURY: Chocolates made by Hershey's in the US: hours: 9 - 4 Eastern Time 1-800-468-1714" I apologize for such a long post! Caryn

Thanks everyone. I have kids calm, but Amy, I will look into a liquid version for the future. I like to mix his vitamins in either yogurt, juice, or apple sauce as he is still too young to swallow the big capsules. His corn allergy is a problem with too much ascorbic acid so I have to watch how much I give him. Does the liquid have ascorbic acid in it? Caryn

Ladies, I am wondering which type of magnesium is best for tics? We are currently using glycinate. I noticed a low level of ticcing over the last month (very light blinking and nose twitching from time to time--not necessarily constant but often enough to be a bother). Today I experimented by giving ds a tsp of Kid's Calm with the vits and low and behold the tics stopped completely after that. Hm. Is this a coincidence or is there a reason for this that I'm not aware of? Thanks for the input. Caryn

When we had our son tested by Alcat we found out he had an intolerance to flouride. He was a teeth grinder too. We switched his toothpaste to Tom's (bought at whole foods). It is all natural. He stopped grinding his teeth, but it had nothing to do with toothpaste IMO. Teeth grinding and bedwetting both stopped when we took him off of wheat and corn. Hope this helps.

A good read on vaccines for anyone interested: http://www.relfe.com/vaccine.html

Kim, I just want to say that my son (born 2003) never received a single vaccine with themerisol and still ended up with a tic disorder. It disturbs me to no end that the CDC's comment on Oprah only addressed themerisol and not the ninety million other anti-cellular ingredients that can be just as damaging to our children. I have some questions for all you mothers out there: How many of our TS kids were jaundiced at birth? Mine was. Why does the pediatric community feel it is safe and okay to vaccinate babies with jaundice? I personally think babies should not be vaccinated in the first year. We chose not to vaccinate ds#3 as he was born about the time ds#1 developed symptoms. #3 has only had 2 shots, and he is the healthiest by far of the three boys. Why is this affecting boys primarily? Does anyone know? Caryn --Maybe what the government needs is a massive all-American class action lawsuit? Every parent that followed the CDC vaccine schedule and ended up with a diagnosis.

Thanks Chemar and Faith. I will cut back on the taurine starting tomorrow. My son is no longer blinking either. I think it was anxiety over starting a new school year. It is so strange how the tics can just reappear even though you are doing everything "right" as far as diet and supps, then all of a sudden disappear just as fast, as if it never happened. I suppose that is just all part of TS. Faith and Chemar, we do have our son on zinc and magnesium. I think you guys are right in assuming that the dose was too high. If he is not currently ticking again I may just stop the taurine for a few days and see what happens. Thanks again. Caryn

Hi everybody, I haven't posted in a while, but I have been silently lurking. Hope you all have had a great summer. My question is to Chemar and anyone else that has been using taurine. We noticed that it is making our 4 yr old lose his good appetite. We have been giving it after breakfast and after dinner twice a day. The doc prescribed two doses of 325 mg each. Our ds weighs 40 lbs. He tends to eat less during the day when we give the taurine then he would if we omitted it. He has very mild symptoms and was blinking a bit the 1st week of school despite the taurine doses. Now he is back to his old self since the anxiety of starting something new has subsided. Blinking is gone except if he stays up a little after bedtime and gets tired. Does anyone have a similar experience? Should we just omit the taurine? Caryn

Carolyn, Can you get a really good blender/juicer machine that you could use to make shakes, then add the capsules to it and stir? I know there would be some residue in the glass, but maybe just a light stir in the center of the glass. This might help you get them down. Just my 2 cents. Caryn

C.P. When we visited our in-laws I shamelessly brought Sheila Rogers book with me and left it out. I was really surprised how much everybody was willing to help even though they didn't know a thing about TS. On the few nights my dh and I went out and my mother-in-law babysat we would catch her reading the book when we walked in the door. She loved having it as a resource. They also did a few really cool things for us before we came that we never even asked them to do. For one they emptied and cleaned out a mini-fridge for us and my son knew that he only ate out of his special fridge. Wow. That was awesome for everybody. Maybe if you have your whole house set up for your child you could set up a mini fridge and cabinet space just for grandpa. I bet he would be really touched by your efforts. When my dh and I took the kids on a vacation recently I packed him a few of his favorites that are on ds avoidance list and he "secretly" indulged. It really made him feel great that I thought of him. I think that sometimes our child's dx causes us to focus so much on making his or her home life easier that we don't often recognize the sacrifices of those around us who comply and don't have special needs. Just my two cents. Caryn

Yes, And I just learned a bit about corn as well. The plant originally had a gene mutation that would have caused it to die out as the seeds are encased in tightly covered husks and the male sex parts are unable to germinate without human interference. I have a fascination right now with the plant as I am trying to figure out why it causes such a reaction in my son. Not sure if the GMO corn is any worse than natural corn. Have a friend who is a plant molecular biologist and he assured me the GMO crop is okay. Caryn

Thanks Jeff. I will check it out today. I have heard the name being dropped here and there but did not realize there was an organization with as many resources. I will definitely visit for more info. One last question--- we have two other kids, what is the likelihood that they too have similar food intolerances? (One is 1 yr old, other 2 1/2?) We have put them on the same elimination diet as our child with ts for the most part, as I am cooking meals for the family and buying the color-free, preservative free foods at the grocer that suite our son with the allergies. At their ages it is hard to give something to one and not the other, also-- we have to keep ds4's reactive foods out of the house as he does not know what ingredients are in what and is certainly old enough to help himself when he is hungry. Caryn

Hi Faith, We just returned from vacation and we too had a few episodes with food coloring. (Our ds ate some skittles without our knowledge) and that set him off for a couple of days. With the food colors and with corn we notice that he gets very goofy--spacey--down-right irritating to be around even after a little bit, and then the side effects don't seem to wear off until almost two days later (although they do wane.) Do you also notice a change in behavior? My ds is only 4 1/2, so part of it may be his immaturity-- you know, thinking that he is being funny. But it is amazing the difference in him when he is off the stuff. Jeff, Do you have some good sources that I could read about food colorings? Thanks. We are also starting to use taurine with mag. every day and we have noticed our ds has a much easier time sleeping too. He has actually started taking naps again (on three or four occasions in the last two weeks) for the first time in over a year. We have found success with taurine. Caryn

Mom and Dad, Welcome! You will find a lot of good advice here. Just a thought about birthday parties and ticcing-- we saw the worst ticcing whenever our son attended parties as well-- wasn't until later on after reading some posts here about tartrazine (yellow dye #5) that I learned how damaging it was for my son. (Chemar wrote a beautiful post about it for me.) Do an internal search for old threads. I suspect your son is reacting to the food coloring that is so prevalent at these parties-- heck it is in the frosting, usually the juice cartons they serve, could be the pop if he's drinking anything orange, would be in the goldfish if they are colored. It is in all gummy bear candies, fruit chews, etc... Heck, I even found it in the store bought potato salad!!!!!! Just a thought. My son doesn't touch the stuff anymore. We read all labels, and if I don't know, we avoid it like the plague. Just my two cents.

yes, and I remembered two things that may be good as substitutes: legumes for protein and maple syrup

Hi! How bad is your son's symptoms? I am in the middle of doing an elimination diet with my ds 4. His list of allergies wasn't as long as yours was, but we did eliminate his top reactive foods 100% (That being Corn and Wheat). We also initially eliminated the long list of things he was moderately allergic to. I kept pretty much to this method for two months. We then began reintroduction of foods he was moderately allergic to one at a time, one every four days, to see if there was a reaction. If not, we kept the food in the rotation-- but got out of the habit of allowing it every day. you said: "Food allergies, he is allergic to Corn, Soybean, Tea, Beef, Potato, Tomato, Black Pepper, Fresh Water Fish. He is Questionable on Wheat, Malt, Egg, Chocolate, Milk, Chicken, Lettuce, Cane Sugar, Cottonseed, Bakers Yeast, Onion, Salt Water Fish, Oat, Mozzorella Cheese & Coconut. We are now to start a rotational diet, and challenge the foods in which he is questionable. Foods that you can not challenge because they are all but impossible to avoid meaning they are in everything are Wheat, Corn, Malt, Soybean, Egg, Milk, Cottonseed, Bakers Yeast, Peanut." I highlighted the things our son's have in common allergically, just to wrap my head around your situation and compare it to our own. We did not have as many air born allergies to deal with as you do with your son. I would say that you have to definitely eliminate corn and soybean and all their derivative by products as a start. A lot of people can't tolerate tomatoes-- understandable for avoidance. Beef is vital for B12, so elimination may require a supplement. Fish is vital for the omegas, but lots of kids can't tolerate fish oil and take flax seed. Black pepper he can do without, as the potatoes. Sweet potatoes are in a different family, so prob. could be a subsitute. You could try to eliminate these for two weeks to see if there is a substantial improvement. (It takes a couple weeks.) As far as moderate allergies, you could hold off on completely eliminating chicken, lettuce, cane sugar, onions. Our son did not test allergic to milk, thankfully. You do have options, though. Almond milk is a possibility, I don't know how old your son is, but you need to make sure he's getting enough fat, and almond milk would have fat. Rice milk is good too, but low in fat. According to Sheila Roger's book the four main neurological allergies are wheat, milk, corn, and egg. You could focus on those only and see if that makes a difference. Also, sometimes these allergy tests are not 100% accurate. You may find that even though a food is allergic your son can tolerate small doses without a neurological effect. (May be histamine related instead.) We found that our son could tolerate egg yolk without ticcing after two months of elimination. Substitute foods that may work for you: rice as staple, can buy it as noodles, etc... Namaste bread mix products Wellshire Farms sells hotdogs that have no fillers and are all natural. They have Turkey. non-sweetened rice crisp cereals (bought at Whole Foods) Buckwheat cereal (does not taste bad and is not wheat) spinach instead of lettuce carrots almond butter instead of peanut butter carob chips instead of chocolate You can get a non-corn baking powder for gluten free soda breads. Feather something.... applesauce yogurt?-- I have heard that some people with milk allergy can tolerate yogurt. peas goat milk (not tasty if you are not used to it) Can be used in baking, though. All kinds of fruit-- apples, oranges, peaches, blueberries, bananas, etc... I know others have said bananas, raisins and grapes are not good because of salytcites, but we never omitted them due to our large elimination list and it never served as a problem for us. Also, we did acupuncture to help him recover from multiple allergies and to calm his liver, spleen and kidneys. I think it helped. Write back if you have any more questions. The first steps can be overwhelming, I know. Once you get a handle on this you will feel so much better. It is possible to balance the diet, for me it meant getting creative and using foods I normally never would: eggplant, squash, etc... In looking at you son's list, it looks like he is allergic to just about every protein there is except turkey. You may want to do turkey two maybe three times a week and then only allow the moderate allergies once every four or five days each. (Chicken, milk based protein, cheese, salt-water fish) If you have to serve something make sure it is fresh, not processed. That may help, too. You will figure this out. Wheat can be eliminated successfully. We are doing great eliminating wheat and corn. Four months ago I felt like someone had pulled the rug out from under us, but now we have gone beyond coping-- we are in a groove and are not missing the allergic foods. Good luck and let me know if you have anymore questions. I would be glad to answer. Caryn

Nadine, My son had a teeth grinding tic for two months and the addition of B5 along with the elimination of corn and wheat products brought it to a halt for us. Not sure which really did it. Didn't even consider it was the B5 until I just read Chemar's post. Hm... Caryn

mblack, Hi! Just want to suggest, maybe you have already done this-- Try cutting out artificial ingredients in his food as a first measure. Colors, especially Yellow #5... which is in just about everything under the sun, including store bought potato salad and jars of relish. Cut out sulfites, MSG, corn derivatives like maltodextrin, HFCS, etc... In our experience with ds omitting Corn played a major factor in his recovery. After an white blood cell intolerance test we learned that he has a very strong intolerance to sulfites, and wouldn't you know, processed corn products are soaked for up to 2 days in sulfites!!!! (People with sulfite problems lack an enzyme to break it down into sulphates.) Every child is different, but if you read Sheila's book, one thing is pretty constant-- modified, processed food ingredients aggravate symptoms. Our son used to spend 1 1/2 each night laying in bed trying to fall asleep. At his worst he only got 7-8 hrs a night. That didn't last too long, as I took a lot of advice from some really terrific people on this site. Supplements are also key. We are seeing a specialist who put our son on Gabba 6 days a week in addition to his B6, Mag, zinc supps. He is also on fish oil. The Gabba really helps him to stay calm. He used to have rages, but that is all a thing of the past now. He is really happy and well adjusted now. Thank God. We take it one day at a time and keep him on a real healthy organic diet, avoiding his trigger foods. I bring a special bag of snacks with me wherever we go. All the best. Caryn P.S. He sleeps 12 + hrs every night, and falls asleep w/in 20 mins now. Part of your son's current problem may be his anxiety about not sleeping. Maybe you could change the routine to help him relax better and not get so psychologically worked up about it just before he goes to bed. I feel for you. I know the anxiety of not being able to help your child fall asleep. It is agonizing.