Caryn

You could take it to your pharmacist and ask if they could substitute for one w/o artificial colors. Our pharmacist did that, then had the script verified by phoning the doc while I waited.

I read *I believe* in Sheila Rogers book that when symptoms lessen while a child is *fasting* due to illness then is an indicator that something in the diet is triggering an increase in tics. Keep a mental note of this and see if it holds true in the future as well. Having said that, I would get a culture to be on the safe side. Hopefully he will be negative, but how would you know unless you just get it done? I had strep myself last January. My temp was much higher and I could not talk, eat, etc.... People can be carriers and not get sick from it either. Caryn

Hi! I usually post in the Tics and Tourettes Section. We are gluten and corn free and dairy reduced in our house. I have developed a gluten, corn, and dairy free pumpkin pie recipe for my son's upcoming school party where they will be serving pumpkin pie. If you are doing GFCF and are interested, check it out: http://healthy-family.org/caryn/300 Caryn

Everybody, My ds is going to a school party on Wednesday and they are serving pumpkin pie. I experimented with an alternative recipe and the gang loved it. I have posted it at http://healthy-family.org/caryn/300 for anyone interested. Have a great Thanksgiving (for those of you in the States) Caryn

There is one antibiotic that I know of which is free of dyes. Sorry I can't think of the name/brand. Just call your local pharmacist. Our doctor prescribed it for our little guy after ds developed the tics and I told him I wanted to go dye free. There is literally only one brand, as far as I know. I believe it is a putrefied pale orange color. Maybe someone else will pipe in. Caryn

Ann, It is going to get better. Once you find the triggers you will not be so keyed up about it. It is always darkest in the beginning. The first thing you can do is just limit the artificial stuff. Keep fresh fruits and veggies available and steer away from prepackaged foods. Avoid luncheon meats unless they are all natural (Hormel has a line). Get a simple menu going for the week and stick to it. You can do this cheaply if you are organized enough (Make a roast chicken one night, and then strip the carcass to make chicken salad the next day, etc...) Read all labels and watch out for anything you can't pronounce. Avoid fast food places too. Get some good all natural vitamins, especially B6, and also get some magnesium. See if he improves. If he is still ticcing pretty badly then you can go a little bit further. If funds are tight you may want to experiment with an elimination diet. This takes time to do, but may help you pinpoint triggers. The three most common cerebral food allergens are: milk eggs wheat corn (This is according to Sheila Rogers book) You could just start with one at a time, and look for a decrease in symptoms. The experts suggest you eliminate all and then reintroduce one at a time until symptoms come back. You may find that overwhelming to do (I did), especially if you are a single mom and are working. Kids with tic disorders generally have multiple allergens. In our case we did not have any environmental ones, just food ones. But the experiences here run the gamut. We did a lot of eliminations and trial and error before we decided to go ahead and pay for the allergy testing. (A couple hundred dollars). Even if you don't get involved in a strict elimination diet (it's hard, especially when you haven't gotten to the store) then you could greatly reduce a possible food allergen for a day or two and then give a larger than normal helping of that allergen (say wheat) and wait to see if there is a dramatic increase in tics. We had an experience like this that tipped us off in the beginning. Our suspicions proved true when we got the testing back. Skin rashes are common side effects of wheat intolerance. Many celiacs I am in contact with have discussed the connections. I am not sure about the dx you mentioned, but you may want to google that. Caryn

Ann, If your son's tics don't seem to wax and wane and don't seem to be connected to stress, and seem to just continually increase over months then you should consider allergy testing. We discovered our son had a severe wheat and corn allergy/intolerance and a strict gluten free corn-free diet has alleviated symptoms for us consistently now for the past 6 months. (Still has mild, unnoticeable tics probably because it is hard to be 100% with gluten and corn). My son is 4 1/2, too. I understand what you mean. Read some of my earlier threads if you think it may be wheat/gluten or corn. That is one of the simplest things you can do and the results are pretty quick (two weeks for improvement, roughly). In addition, like Carolyn, we have omitted artificial stuff from the diet. That is necessary for improved neurological function in all kids, not just TS. You want to get rid off everything with neurotoxins in them (MSG, aspartame, colors, Sodium Benzoate, etc...) Just read the labels and buy organic when possible. We also have a corn-free house here. We eliminate all corn, not just HFCS. In our case corn is pretty damaging for hyperactivity and attention, bed wetting in oldest ds. Vitamins are essential, as the body would be deficient from lack of proper absorption. We do vits, minerals, and amino acids. I am pretty sure Bontech would ship to Canada. If not, just get a good multi (non-synthetic), a B6, magnesium taurate or citrate, vitamin C and E, for starters. Some kids take fish oil, others do flax oil. Some do omega 6s like borage or evening primrose. You need to experiment to see what is agreeable to your son. Welcome. You've come to a fabulous place. The parents here are well informed and have loads of experience. I learn something from this forum every time I log in. Caryn

Pat, Check out the Pfeiffer Center's Website. I know they treat OCD. Google Dr. Walsh, too. You might get info that way too. Bmom, yes, wheat and corn were "red" on the Alcat test. We do not have a definitive dx on celiac as I was uninformed at the time. (Alcat reported a medium intolerance to gluten, but did not report on whether or not he was celiac). To be honest, at the time I didn't have a clue. Hindsight is always 20/20. That is why I am posting what I have learned, in the event someone stumbles across this in the future. Now a blood test would come back negative regardless as he has been GF for too long. It is very hard to get a positive dx but a negative one does not mean that you do not have celiac's disease. Once a person develops celiac's disease they can NOT EVER eat gluten again. It is not reversible or curable. It is an autoimmune disorder that causes damage to the small intestine (and neurological damage in some cases). Antibodies are produced that attack the small intestine each time gluten is ingested, and in some cases attack the CNS. This is why I hesitate to do NAET for the wheat. My son really doesn't suffer from environmental allergies. Wheat and corn are pretty much it. I'm just going to wait and see. If the tics wax in the future despite the diet then I will look into it as a possible treatment. Caryn

We did the alcat because another parent suggested it, as it tests the white blood cells and is a good indicator of delayed intolerances. The company claims 80% accuracy on a double blind test (I'm not sure, you'll have to look at the site for specifics--this is off the top of my head). I was intrigued by the NAET idea and read various postings on it. I may look into it in the future, but right now I am satisfied doing the diet. We have reintroduced all of the allergy foods except wheat and corn. Both substances continue to give Tigger problems. I am not sure NAET could 'cure' Celiac's Disease as it is genetic, and I have yet to start my research on corn (another elephant project). So NAET sits in my mind as a future possibility for a more 'normal' social life in the future. And to answer your questions, yes, there is no waxing and waning with my son. This is why I have my suspicions with wheat. If it were true TS then he would have major wax and wane periods that would not be controlled with diet. We saw the major ticcing go away and for six months stay away. I had a titer test last winter and it came back negative. My son has never had antibiotics, and never got the MMR or flu vaxs, was never on soy formula (nursed exclusively 1st year) and does not have a milk allergy. It just seems like his system got out of wack after his last vaccines and that was the catalyst that set the whole wheat intolerance issue into overdrive (IMO). His tics came on during candy season and peaked on his birthday, a month after Christmas. (Wheat, corn, artificial everything). I want to burn the video recording of that day. It is painful to watch. It was a gradual increase over two months that peaked and didn't change for the better until we started the diet. I don't want anyone to misunderstand. My son is not 'cured'. I have to stress that. Trust me, gluten is in so many things and it is very easy for him to get cross contamination or accidental ingestion--playdough at preschool (not sure if handling it is okay, some celiacs say no), getting the wrong thing at the grandparents house (like Kelloggs Rice Crispies--honest mistake if you are older and don't have your glasses), or a friend's house. He is only 4 1/2, so with a lack of understanding mistakes happen. And besides, quite honestly, it is hard to get a handle on exactly what is safe to eat. (xanthan gum is grown on corn, white vinegar is made from corn, etc....) I just try a food out and see, one at a time. I never see ticcing other than an occasional nose twitch now unless he eats foods with wheat or corn.

Hi all, I'm still researching, but I have finally put together an article that touches on the subject a little more in depth. I have to specify that in scientific studies there is no consistent research connecting gluten intolerance to pediatric tic disorders, but I believe that is because Tourette Syndrome and chronic tic disorders are a clinical diagnosis with several very different possible causes (as we all know--- vaccine injury, Pandas, etc....), thus making it difficult to "prove" an association as subjects in the study may not have TS because of CD while others do. Gluten induced tics IMO are a small percentage of the population that suffer from tic disorders. If you look at the threads that were started by Claire a couple years ago you will see that many, not all respondents, had gluten intolerance or wheat allergy. In addition, most TS sufferers have multiple allergies and so it is hard to pinpoint what is causing the tics. In our case it appears that gluten is the main trigger for tics. We have been gluten and corn free for six months now and I have noticed that even though I have reintroduced other foods on his original allergy test none have induced ticcing other than wheat or corn. (This does not mean that the intolerance or allergy to other foods are gone, it just means that the other allergies are not directly affecting the tics.) I have experimented with this on different occasions and the same always holds true. Corn causes him to turn into Tigger and bounce off the walls. If he's doing school work he's poking holes in his paper and scribbling like he's two years old. He wets his bed, can even have an accident at school. Wheat makes him tic, get very irritable--We have to dust off the naughty step too-- and it causes insomnia. All his major tics are gone and have been since we cleaned up the diet and began the vitamin treatments. A dietary infraction will cause a nose twitch to appear and it will remain fairly constant until the offending food has passed through his system (2-4 days). I have to stress that we practice a diet that is as organic as possible (always organic eggs, milk, meat-- often fruit-- and veggies whenever possible) and no artificial anything including ascorbic acid (corn) unless absolutely necessary. Vitamins play an important role as he has an underlying condition (pyroluria) that could quite possibly be a direct result of the wheat intolerance issue, as it strips the body of vital nutrients. This could be a permanent condition, or possibly only temporary. A doc I am in contact with says there is new evidence to support a gut-brain connection. I will report on that later. This means that anyone suffering from pyroluria should investigate whether or not they have a gluten intolerance issue. You can have a major issue with wheat and not be celiac. I have to stress this, because a positive celiac test is pretty rare. Of course Tigger fell off the bandwagon on Halloween (sneaking candies when we weren't watching him) and had a major regression that lasted a week. So we are getting him back on track again. It has been a long difficult week. (But again, the tics were not increased at an alarming rate, we mainly dealt with issues of mood/hyperactivity/behavior.) It was a nice wake up call-- a reminder for us about "the way things were" and why we are doing what we are doing with food avoidances. Anyone interested in reading my article (and the accompanying research) please visit: http://healthy-family.org/celiac-causes-neurological-disorders/ Caryn

is your child a milk drinker? Our doc said no cal was needed with adequate milk intake.

Faith, I just finished a post on my blog about the connection between celiac's disease and neurological disorders. http://healthy-family.org/caryn/289 I am continually trying to find info connecting tic disorders to celiac's disease but it is inconclusive. My guess is that because tic disorders are a clinical disease that they are perhaps actually separate conditions/diseases that manifest with similar symptoms, much like with Autism. While a gluten free diet will benefit some kids with tics it will not benefit all kids with tics. (much like some struggle with pandas and need antibiotics.) I also have a growing number of recipes and product reviews for anyone gluten free, casein free, corn free, feingold, or all of the above. Anyone can view the stuff. It is all free. I was so overwhelmed when originally faced with the whole dietary thing and could not find a place on the web that did both wheat and corn avoidance. We are not dairy free, but I often used non dairy alternatives. Call me crazy or just plain overly cautious. Please post any recipes you have. Give me tips on products you find too. Anything at all to build the menu is greatly appreciated. As far as behavior and tics: I have loosely connected the corn to bedwetting hyperactivity (Tigger syndrome) bruxism Likewise I have noticed that the wheat mainly affects the tics. How do I know this? Well, just call it mommy intuition. Little ds is still pretty honest about cheating (usually never happens but this past weekend he majorly fell off the bandwagon.) Needless to say he's been in goodnights for the past three nights. It didn't help that Nana and Papa gave him Kelloggs Rice Crispies while babysitting. Honest mistake. Funny thing, We are now on Tuesday and I purposely did not give him his vitamins to see what would happen. I am assuming he has detoxed as it has been three days. No tics. He is a little irritable, though. We are still dealing with pyroluria but I wonder if that will correct itself with further gf dieting. Some gf adults claim it takes three years to clear their bodies completely of some of the neurological effects (tingling sensations, that sort). If you'd like to try gluten free eating it certainly wouldn't hurt, but statisitically they have not found a high correlation. There is a correlation and it is much higher than the normal population but it is still a small percentage of the afflicted. A poster on another forum also mentioned aspartame and MSG ingestion prenatally could cause the development of neurological disorders in infants and children.

Brskac, I know Pfeiffer Treatment Center sells Primer for Pyroluria over the counter and I am not sure you need a prescription. You can call the pharmacy to ask. Anyway, they would be glad to fill it with a script from your physician. Shipping from Illinois is about 9 bucks continental u.s. and the cost of the vitamins are roughly $40 for I believe a two month supply (don't quote me on that!). the phone number at Pfeiffer is 1-630-505-0300. Borderline and "average" levels of pyroluria would probably get treated fine with the Primer (they sell an adult and a child version). High mauve needs more analysis and a compounded vitamin, or at least more monitoring because doses need to be very high and considered toxic for normal non-mauve people. You can buy a product at Whole foods called zinc status. It can help you to determine if you or your son are deficient in zinc. Zinc toxicity is something to be concerned about so don't take high doses of zinc without doctor supervision and lab test monitoring. It is not uncommon to take another urine test after initial baseline test to determine whether or not the supps are adequate. Stress is key too. You both need to relax and take it easy. Scale back on the work schedule, commitments, and pick up a hobby-- maybe frequent the movie theatre for a while, or go to the library and get some good books. You NEED to do this as part of the treatment. Hope this helps. Welcome to the board. If you have further questions pop me another line either public or private. I usually pop in fairly regularly here. Caryn Oh, and one more thing: diet may play a role in the development and proliferation of pyroluria. You mentioned schitzophrenia? I can almost guarantee that your family may benefit from a gluten free diet. There is a huge connection to schitzophrenia and undiagnosed celiac's disease. Researchers are now discovering a neurologically based series of symptoms related to wheat/gluten intolerance. It can also be a factor in pyroluria but not necessarily. Just get off the bread for a few weeks, visit a few websites about celiac's disease and 'bone up'. Extreme vitamin and mineral deficiency is a classic sign of celiac's disease. If you feel loads better and less edgy then you know the wheat is 'stripping' your body of vital nutrients and leaving your CNS to function without all it needs. Just my two cents. We went gluten free and have had tremendous success.

copper is supposed to help with iron absorption. I find it interesting that you are low in iron and high in copper. Iron poor anemia that is not corrected with iron supps is a sign of celiac's disease. Something to think about if the iron supps don't correct your deficiency. Many foods are high in copper: http://www.whfoods.com/genpage.php?tname=n...ent&dbid=53 Our son (who tested positive for wheat allergy) was very high in copper. He was given molybendum to help bring down copper levels. BTW testing was done just after gluten free diet was enacted (so will act as a sort of baseline for us). We will have him retested after six months. I would be curious to see if there are any changes. Pharmax makes a copper free vitamin (also iron free, though.) hope this helps Caryn

Michele, Symptoms of pyroluria, constant illness, cysts/pimples on face-- Have your husband screened for celiac disease. These are all possible signs of celiac disease. Get him to go off gluten for about a month and see if he doesn't feel better. (When I did my symptoms disappeared). Wheat allergy also can cause cerebral/neurological problems as well as in my son's situation. These are all things that we have been dealing with in our family. Gluten free diet will help tremendously if it is in fact the problem. Most MDs don't even consider dx, as they have been historically taught that it is quite rare. New research is showing that it may not be as rare as once thought. And there is no medicine necessary-- just get off the wheat! Caryn http://healthy-family.org

Thanks a mill Judy! Will do, that was just what I was looking for.

This is very interesting! I'd like to know why too, what is in benedryl?

Okay, I have been doing quite a bit of research on celiac disease at the moment. I have noticed that my son's tics are very tightly (but not solely) related to gluten and corn in the diet. He did not officially test celiac but did test intolerant to wheat and corn and has several symptoms of pediatric celiac's disease. In my research I stumbled on info about how celiac disease can cause neurological dysfunction (cannot find info on corn yet, but I am interested). Research is not expansive on celiac and neurological disorders, but there are a few studies looking at this topic. I just want to throw this in the pot, especially after all our conversations on vaccines. It is my theory that the vaccines are the catalyst that create the right environment for early onset of celiac's disease. (For those that don't know, celiac disease is an autoimmune disorder that attacks the small intestine with self-created anti-bodies thus resulting in catastrophic vitamin/mineral deficiencies in infants and children). I have learned that celiac's disease is becoming more common and some can loosely tie it to learning disabilities, ADHD symptoms, tic disorders, shortened stature, and failure to thrive, etc.... Anemia that is not corrected with iron supps, etc.... I want to write an article about it on my blog, as I really think it is necessary to curb wheat consumption in infants (something the baby food industry doesn't seem to be diligent about as wheat is so cheap. With the inundation of processed foods in our diet, it is present in nearly all foods, too). I just want to get the word out. I'm looking for feedback from you to help me consider the viability of the information I'm uncovering (you know, some studies only have 12 subjects, etc....) And the studies I've found so far are not based on tic disorders solely, either. Thanks to anyone with info. Caryn

Okay, Faith-- This is a stretch, really. But light sensitivity is a symptom of pyroluria. I am just throwing this out there, because it may just be a matter of adding more zinc to his supps? Maybe someone else with more experience could jump in here. My ds did blink more with T.V. and computer at one time but I honestly never took too much notice or wrote down any specifics. All I know is that he doesn't now and he is being treated for pyroluria in addition to tics. Caryn

I got this off of another forum, so I am copying and pasting. Sorry if this was already posted here. Subject: Tourette Syndrome Genetics Research at Rutgers University In June of this year, the New Jersey Center for Tourette Syndrome Sharing Repository at Rutgers University, began collecting clinical and genetic data from New Jersey families affected by Tourette Syndrome. The ultimate goal of this study is to identify genetic (inherited) factors that play a role in causing TS and related disorders such as Chronic Tics, Obsessive Compulsive Disorder and Attention Deficit Disorder. Previous studies have suggested that Tourette Syndrome has a strong inherited component. The purpose of the research is to understand the relationship between genes, Tourette Syndrome and the associated disorders. The study is being done, in part, to try to find out why some individuals in a family are affected with these disorders and others are not. Therefore, both affected and unaffected members of a family are important to this study. If you or someone in your family has been diagnosed with Tourette Syndrome and are interested in participating in this research study, please contact Dr. Gary Heiman at Rutgers University at 732 445 1027 X 40033. Faith Rice Executive Director TSANJ & NJ Center for Tourette Syndrome 908 575 7350 http://www.tsanj.org

I give my ds GABA in the morning. I do not notice any kind of spaciness or inattention. It actually helps our ds remain calm and focused. He tends to be naturally keyed up (high strung) and easily "excited" by his environment. He is driven to perfection so the GABA kind of mellows him out and helps him not to get upset when stuff happens (he loses an object, his newly built fort crashes down, or teething baby brother bites him, etc...) The only bad thing I noticed is that his appetite isn't as great when GABA is coupled with taurine, so I only give it after breakfast and not with taurine. Perhaps the GABA works differently for different kids? He tends to be more easily upset on his off day. (Our dan doc told us only give GABA 6 days a week.) I cannot remember the reason exactly. I think it has something to do with the body's own production levels? Maybe someone else knows. Caryn

I read the same thing. In ds's case, our doc wanted to continue fish oil. It is my understanding that extreme cases of pyroluria have omega 6 deficiencies. I have to double check my facts, but if I remember correctly, there is a conflict between omega 3s and 6s when a person has a severe deficiency in the O6s. Anyone remember for sure? We are using Nordic Naturals 3-6-9. Seems to be working nicely.

I wanted to ask you, does your son have any numbness in his feet, ankles, lower extremities, that you are aware of? Kim, what is that a sign of? B12 deficiency? Too much B6 without enough magnesium? I thought I read something about that somewhere. Caryn

Michele, Best rule of thumb on the B6 is to continue to give it until your child has dream recall. Vivid nightmares or dreaming that disturbs a good night's rest means too much B6. Also, don't give it before bed. Whoa! I have made that mistake. Last dose should be around 4:30-5 p.m. if bedtime is between 7-8. We give milk with magnesium (kids calm) before bed. FYI, low iron that is not corrected with iron supplements is a sign of celiac's disease I recently read. Just thought I'd throw that out there. Zinc status at the health food store will let you know if your child is deficient in zinc. Just start with a low dose and increase until the status shows there is no longer a deficiency (unless you do a blood test for zinc levels). And keep testing. Many times these patients require higher doses at first to balance the system out, and once the tissues are saturated they go on a maintenance dose. Canker sores is another sign of zinc deficiency. I'll throw that out too. This is also a condition with high stress factors. Try to keep home life as calm and peaceful as possible. Also, do your best to curb activities if you need to. Once the anxiety tapers off you can begin to tackle more stuff again. In our case I noticed a big difference with my ds when I focused on keeping him relaxed. Low zinc will cause problems with sense of smell. Enhanced smelling is a sign that things are beginning to balance out again. There is something too about a metallic taste in the mouth--I have to reread my stuff and get back to you on that one. Maybe someone else recalls? Hope this helps. My brain is tired and the dishes await. Hm. I hate when I procrastinate! Caryn

Amy, The most common cerebral allergies, according to Sheila Rogers book are: wheat corn eggs milk Our son tested positive to three out of four!!!! You could start there, eliminating one at a time to see what gives relief. Keep a journal of symptoms. We took the Alcat test and found it to be quite accurate. Caryn