Caryn

Judy, I am so sorry to hear your story and I hope I can offer you a small bit of hope through my experience. We too saw our first tics after our ds age 3 1/2 at the time received his vaccinations (varicella and hepatitis . I am not sure which chicken pox vax your grandson got, but some, maybe all, have animal byproducts such as pig gelatin in them that may be an allergy of sorts. Also, some claim that certain vaccines may help promote the spread of candida overgrowth in the body, as do over use of antibiotics. (I am assuming the z pack is an antibiotic?) Some parents on this forum believe that an outbreak of tics combined with a fever could indicate PANDAS diagnosis or PITANDS-- which means that the child is exposed to strep throat or other virus and their body produces an excess amount of antibodies. Someone else could tell you more on this. Many of these parents treat their kids with antibiotics, saying that the antibiotics will diminish the tics. In our case we discovered that our son was gluten intolerant and allergic to corn. (Originally he had over 17 allergies in an IgG allergy/intolerance blood test we did.) We also treated him for candida with a special low sugar, organic diet that eliminated wheat, corn, was soy reduced, and dairy reduced, and only used honey, maple syrup or regular plain old fruit for sweetening. We did do probiotics and heavy vitamin treatments for a while but after a year on a special diet he is free from tics and recovering quite well. We now are organic, low sugar, dairy reduced (except Kefir and natural yogurts, butter), and still gluten and corn free. I hope more people answer you as the day goes on. These kids have various reasons for tics and various treatments that work. You have to play detective to figure it out. The gist of it is that his little system has had a toxic overload and needs to be cleansed for him to get healing. I have a blog that highlights what we have learned, foods we eat, and recipes for dishes I make. Feel free to peruse it if you'd like. Check back here too, as I am sure other experienced parents will be weighing in with good advice. Hope this helps. Caryn http://healthy-family.org

Yep, I forgot about that since I threw my coromega out. Sodium Benzoate has been proved to make all kids hyper in a recent study. I summarized it way back when: http://healthy-family.org/caryn/231 Also, FWIW all cough syrups commercially bought including at health food stores have sodium benzoate in them as far as I could find. For my son it is like giving him speed. I stay far away from it. Caryn

Coromega has corn in it. I used it for ds and had the same problem. Try nordic naturals.

That has been my experience with the different people I have talked with. I have purchased enzymes from Houston but have not yet implemented them. (Other than experimenting on myself one time). My son is VERY reactive to gluten. The woman who I talked with from the company told me that it certainly does not work for all kids and that the degree of damage plays a role. She has worked with many families that started the enzymes only to quit because their child's symptoms worsened. Some of these same families returned to the enzymes six months later to find that they worked. She surmised that this was because the gut had ample time to heal. Some found that they just wouldn't ever work. They are not a magic pill. I would rather someone err on the side of caution than jump the gun. Let me explain. Six months ago when Tigger got accidental cross contamination he would erupt with ticcing. Not so anymore. Now he will puke or have explosive diarrhea. It appears as if the reaction has shifted from neurological to just the gut. I cannot explain why this is. Perhaps he had a leaky gut and it has healed? I only know that I have definitely seen a shift. Whether or not the neurological flares up again in the future I don't know. Perhaps if we go back on a typical American diet it would. The thing with the enzymes is that they have to be given with EVERY meal. You cannot just give them in the morning and expect them to work all day long. Gluten without enzymes will cause damage. When a very reactive child is put on a gluten diet with enzymes the chances for cross-contamination are much greater. How does the child know what is safe or unsafe? Thus the message we send is confusing. You can only eat gluten with pills..... It is like feeding a diabetic cotton candy and then saying, well-- let's just give you a shot to counteract it. I really think a gluten diet is dangerous for the gluten intolerant, regardless of how reactive you are. If you are gluten intolerant then you have the gene that can cause celiac. For me the enzymes helped only with digestion, not with inflammation or other symptoms (in my experience). I had no bloating or pain after eating the gluten (I am gluten intolerant but as far as I know not celiac). I did have flatulence and inflammation the next day. FWIW I ate a burger so I ingested gluten and yeast (which is pretty much what we all do on a gluten diet, as most all bread has yeast.) I am not sure how the enzymes work with digestion of yeast. I will have to inquire. I bought them recently thinking that they may help us with cross contamination as the last few times we ate GF at restaurants Tigger got sick and either puked or got diarrhea. Not a good way to end a day out. My hope was to give him the enzymes for the odd occasion when we have to eat out (Like my grandmother's 90th birthday) and he may get gluten from an inexperienced server or cook who doesn't understand the dangers of using contaminated pots and serving utensils. Right now I don't plan on giving him a gluten diet with enzymes. I may change my mind, but for now we are very happily gluten free at home. Caryn

IMHO-- We did both. I started with heavy amounts of Bontech supps in the beginning then went to special compounded supps. They helped but did not eradicate the tics. The only thing that did that was a GF diet. If your child is gluten intolerant or has another specific allergy to a certain food no amount of supplements in the world will stop the ticcing completely when they are still ingesting the allergen and thus causing the immune system to produce excessive antibodies. I didn't want to do GF (and corn-free) either when I first got the results back. It was like a death sentence to the Christmas cookie lady. But you know what? Almost a year later and I am not looking back. My kids are so much healthier now and we are off the supplements (knock on wood) for two full months. No tics for nearly three full weeks. I think if you are dealing with a gut disorder that leaks into the brain the only thing that will really heal that is a good anti-allergen diet and lots of time. We are now flirting with the idea of enzymes but I have been told not to do that under any circumstances unless the gut is completely healed because the neurological part of it will flare up. So I say this-- heal the gut if that's what you need to do. Commit to at least a year GF if your child tests gluten intolerant. After that you may be a candidate for enzymes and may be able to return to a low gluten diet (I say this without experience, so don't trust me completely). I am scouring the internet for people using enzymes successfully (there are many that have not found success, the main reason being that the gut was not completely healed). So that's my feeling on the subject. Caryn

yes, and I thought about this last night after I had posted--- Did she receive an IV with the surgery? As Faith and I know all too well-- corn is an insidious tic trigger. IVs are made primarily from corn byproducts. I am a regular consumer of corn allergy information sites as it has been necessary to keep our son tic free or majorly tic reduced. He started symptoms at 3 1/2 and they had an onset like what you have described. (Only we did not have a major surgery to provoke them.) On that note, many corn allergic people have claimed that IVs are extremely dangerous and detrimental to them. for example, on Ephraim Vishniac's website, http://www.vishniac.com/ephraim/corn-bother.html he writes: dextrose (glucose), fructose Dextrose (also known as glucose or "corn sugar") and fructose ("fruit sugar") are simple sugars that are often made from corn. Dextrose is used in a variety of foods, including cookies, ice cream and sports drinks such as Gatorade. It also shows up in prepared foods that are supposed to come out crispy, such as french fries, fish sticks, and potato puffs. It's common in intravenous solutions, which could be quite dangerous. Fructose is usually seen in the form of high fructose corn syrup, but makes an occasional appearance on its own. Just a thought. I don't want to overwhelm you with too much information. As Faith will agree, I'm sure, corn has an insidious way of reeking havoc especially if it is ingested at very high doses. A RAST test will not necessarily show a corn intolerance. Both Faith and I had an IgG test done. Our pediatrician told us that he did not believe in such tests, but for us that test was the one thing that helped us to get a grip on things. I would have never figured out the corn allergy any other way as it is in so many processed foods and just about all hygiene products. Rashes on the bum and ezcema are signs of allergy. Just my two cents. Hope it is worth something to you as you try to sort through all this.

I would suggest you get her tested for gluten intolerance and milk allergy. The developmental delays, apraxia.... constant ear infections, etc... Surgery is traumatic at any age and would put added stress on the body. Pandas is a clinical dx, and before you go down that route do take a look at whether or not she has a food allergy/intolerance that is causing chronic illness and neurological dysfunction (gluten is a prime suspect). We found this to be true for our ds. He is now healthy and happy and no longer needs routine antibiotics for chronic re-occurring ear infections, etc.... We did look into PANDAS quite a while ago when all this had first begun. Caryn

Bontech is pretty comprehensive. Our DAN doc said the only thing he didn't like was that it didn't have any zinc. He also said ds needed to get his daily intake of calcium too. We did Bontech initially and then phased it out to do a compounded vit. With the compounded vit that was more specific to our son's lab results we included a very pure multi called Baby Plex (it is a liquid that comes with a dropper and even my baby will take it directly on his tongue so it must not taste that awful). I give it to all my kids. It doesn't have 100% of everything, but we are feeding ds a very good diet high in fruits and veggies, gluten and corn free. We do not do anything artificial either. At the time I did like the Bontech and got very good results with it. It was just too many vits every day for a 4 yr old. The compounded vit was only four a day. We are currently TS supplement free after almost a year on the gluten and corn free dairy reduced diet. We do use baby plex and fish oil daily. This may change as our ds's stress levels change and or/ he infringes on his diet. Hope this helps. I noticed you haven't gotten a response yet and so I thought I would offer up what little info I had.

Thanks Chemar for the clarity you provide with your post. I do not want anyone to get the misconception that this is a cure all. No, Faith, we are not using the Threelac at the moment. I was also advised (Like C.P.) to try Kefir instead. So far so good. C.P.-- I do the exact same thing as you with it. I will also mix it with all natural not from concentrate orange juice. It is funny, but now that my Tigger is used to sugar free eating he does not notice that it isn't sweet. I think the most important thing I have learned along the way is to get rid of the sugar and starchy foods that do not provide good nutritious value and replace them with fresh or frozen fruits and veggies. We have slowly moved toward a more specific carbohydrate diet but we never quite went all the way with it. We were lucky that our son's corn allergy led us down this path inadvertently. I firmly believe that the candida cleanse diet is a lifestyle that has to be maintained. I bet that if we went off the plantation so to speak we would see a return of symptoms in maybe a month, maybe six months, maybe a year. I have talked to a few others that have said that they strayed from the diet only to return after symptoms resurfaced. So for now we are doing great and have seen complete remission of symptoms.... But Valentine's Day is coming, and it is followed by Easter..... We may see some light ticcing again when we allow for a few treats. I will keep you all updated. -- As for the pyroluria dx, I have read a bunch of Dr. McGinnis's work about the gut connection and oxidative stress. We are doing a trial of no supps (although I have to clarify that he still gets fish oil and a regular multi just like any other kid.) Caryn

Faith, We have been off all supps for two months now. We went off a few weeks before Christmas. As far as the probiotics, I was in contact with a woman whose child was treated through Dr. Semon and she (herself a biologist) said that she could not get the probiotic to function in the lab and questioned whether or not it would in the gut as it needed to. She suggested I use live cultures like what you'd find in Kefir or homemade yogurt. She told me that her child was symptom free for three years after the candida cleanse with nystatin and that her child had only one flare up due to a course of antibiotics. They promptly returned to the regime and the tics subsided and never returned again (so far). Tracey-- Do use the supplements. That is a great place to start and will give you relief in the immediate time frame. In our case even when we went gluten free we did not get an immediate relief of symptoms. Gluten can take months to get out of the system. If you are a middle aged adult it could be over a year from what I've been told. While you are doing the supplements take some time to evaluate your options and to consider your particular situation. Keep a food diary and stay away from candida friendly foods. Stick to the basics. Yes we do a 'feingold' diet. It is really 'feingold plus' IMHO. We do not use their product listing because quite frankly, we cannot have most of what is on that listing anyway as our diet is much more restricting. The Feingold diet does not restrict wheat, gluten, corn, casein, egg, soy, etc.... It only eliminates artificial stuff and salicylates. But we did not start with this extreme treatment protocol. We arrived here as a 'last stop' on the train ride so to speak. Take the train ride. You may be able to get off much earlier than we did. If not, then when you get to the last stop you will know exactly what needs to be done for the cure. FWIW-- We are not doing a strict SCD diet. I do not allow dairy unless it is in the Kefir or yogurt, so in that sense we are not strictly GFCF-- (gluten free and casein free) either. Occasionally I will let him have a minute amount of cheese. I still allow the odd sweet treat (but not daily). Our regular diet is completely sugar free. We do allow maple syrup (a no-no on the SCD diet) and honey (which is used on the SCD diet). On a very rare occasion I will allow cane sugar but it is never refined sugar, always organic and minimally processed (like evaporated cane juice). It took a long time, but I somehow figured out what works for Tigger and our family and have stuck to it religiously. Faith, Tigger is five, after all-- He does not have explosive meltdowns but he still has more anxiety that his brother Chuckles or many of his peers. Part of this may be the fact that he is a little advanced for his age and tends to worry about things that he shouldn't (like the astronauts dying in space). He also has a very intense level of concentration and a very big vocabulary so he understands adult conversations both among adults around him and on TV. This causes stress too. He also has social stress. For instance, we went to a mother son dance with his brother and his brother had a great time from the start but he was very anxious and unhappy the first half-hour we were there. By the end of the night he was having the time of his life). I try to separate what is normal five year old stuff and what is over the top and in need of medication. I think for a while there I would blame the condition for the behavior and instead of sit down with him and talk about how he should have handled himself better. I would discuss how I needed to up this dose or alter that one. I think subconsciously I was sending him the message that it was okay to behave that way because there was 'something wrong with him and he couldn't help it.' Tigger still gets mad but I think it is in the realm of a normal five year old who has pesky 3 yr old and 1 1/2 yr old brothers that like to destroy his lego creations, take his cars, and break his crayons. So for right now we are supplement free and tic free. Things may change as time moves on. I will keep you updated. Caryn

itsme, I have a friend who is doing a dissertation on TS treatments and she told me about Dr. Semon and his protocol. Dr. Semon has a child with autism. We are currently completely tic free since just after Christmas and are following a system quite similar to what you described, only we are not doing nystatin (not because we don't want to, just because I haven't been to see my practitioner to inquire about a script. We do eat potatoes, and have been gluten and corn free for almost 11 months. (Being corn free is practically a candida diet as you have to eliminate vinegars and pickles, etc....) I do allow for the odd sweet, but we are basically sugar free for the most part. We have eased off of the gluten free breads lately, and only allow natural juice (no store bought brands with citric acid and or sugar). We have also eliminated most dairy. We are no longer doing probiotic or vitamins. I read somewhere awhile back in a study that too high doses of B6 for too long develops a sensitivity to phenols. We personally saw that happen with our ds so I decided to step back on the vits before he was basically allergic to everything. We are very happy with his health and his progress and are pretty much supplement free now. Yes, I agree that candida is a major issue. We are using kefir (which I heard from someone on the SCD diet that it contains yeast). SCD dieters make their own homemade yogurts. We are doing fine with the kefir for now, but I may get adventurous with the yogurt in the future. At the moment I do not have a yogurt maker. I highly recommend this route for anyone interested. We literally no longer have the many problems that are often mentioned here. Our ds is doing very well and most people we meet have no idea that he was dx'd with a chronic tic disorder last year. One doctor thought he was a 'classic' case and would eventually be dx'd with TS. I want to mention too, that our son (age 3 3/4 at onset and now age 5), was dx'd gluten intolerant and allergic to wheat and corn through IgG testing last year. We used to see: facial grimacing, insomnia, rages, excessive eyeblinking, shoulder shrugs, head nodding, sleeve pushing, sniffing, throat clearing, screen sensitivity, and obsessive anxiety. (at his worst he would change his clothes six times a day after urinating because he felt he was 'dirty' if even a drop of pee landed in his knickers.) change upset him and he often needed much coaxing to help him in social situations. Daily meltdowns were common. For us the vits helped initially to take the edge off of the symptoms. We did the high vit doses for five months, but it wasn't until we were on the diet for quite some time before we could drop the vits altogether. Anyone interested in going this route must understand that there is no immediate 'cure'. For us it was VERY gradual. I think it depends on the severity of the case, too. Caryn

I'm not sure what condition his symptoms best mimic, but I thought I would post a summary of an article I found. You put me thinking because my dh has had jerks like this for years and they went away when he went gluten free (well, to be more accurate I should say gluten occasional LOL). He was more like PLMD than RLS. The think that is concerning is that it usually coincides with the onset of an autoimmune disorder. Something to think about. My fil also has jerking limbs when he sleeps. http://autoimmunedisease.suite101.com/arti...disorders_in_ad

Before we go ahead and try the product I inquired on a celiac forum I belong to about enzymes. I got an interesting response by a celiac friend who has a celiac son (age 10). Here it is: We tried that and even though he was not given gluten on purpose (may have had accidental), he did not do well. I think it caused neuro problems. My friends on a food intolerances lists said all their kids stimmed and had other as behaviours when on enzymes. They speculated that it was because all of the enzymes made it go straight into the blood stream and to the brain. I would have to agree based on our experience. We tried it for over a year. I would love to know how this resonates with those of you who have done both food avoidances and enzymes. I am having second thoughts about the enzymes now. Caryn

Mary, Have you reintroduced gluten to your son's diet? Muscle twitching is common for the gluten intolerant/celiac when they are ingesting gluten in the diet. Is this symptom constant or does it wane while off the gluten? Gluten has been scientifically proven to cause ataxia in many cases. There is plenty of evidence to suggest that the many claims of gluten-free celiacs is true. They often claim that once the gluten is removed from the diet the muscle twitches and cramps go away. This is a highly talked about issue on GF forums. Also, for us, the sleep improved TREMENDOUSLY for Tigger. (averages 2 more hours a night now GF-- unless his brothers are loud and wake him up). Caryn

Gluten-Ease is certainly talked about on Celiac forums. I think it sells for about $19.99 per bottle. The theory is that a dose could come in handy in case of accidental gluten cross-contamination. The catch is that Gluten-Ease would have to be taken simultaneously with the gluten just as Lactaid has to be taken simultaneously with dairy products. The dosage is critically important since even a tiny amount of gluten is harmful to a celiac. If you haven't properly had your child tested for celiac disease than it could be a dangerous short term solution for a child who exhibits symptoms of gluten sensitive enteropathy/celiac disease. Many people go gluten free and get positive health results after years of 'false' negatives on celiac screens. They put more stock in a strict diet with results than a negative blood test and continual illness. There are countless numbers of people who have 'self diagnosed' because they couldn't get a positive on a blood test and were just sick and tired of being sick and tired. We do not have a positive dx for celiac (as we went gluten free before we realized we should have done a biopsy first), but Tigger did test positive for gluten intolerance and had many of the gastro symptoms that are common, so I'm left feeling ambivalent about Gluten-Ease to alleviate purposeful gluten ingestion. I have that constant fear of the unknown-- is my child really celiac but I don't know it? Undiagnosed Celiac disease on a gluten diet leads to all kinds of autoimmune disorders, cancers. You wouldn't give sugar to a diabetic, or alcohol to a recovering alcoholic. Same principle here IMHO. Now if I had a biopsy done that clearly showed he had no celiac, had genetic testing done that showed he does not have the two genetic markers that lead to celiac disease, but I know he is lacking proper enzyme production in general. Then maybe I would consider it. I do plan to purchase Trienza for Tigger (and it does include enzymes for gluten and casein as well as salicylates), but I do not plan to allow gluten on the diet regardless. Damage to the small intestine leads to leaky gut and leaky gut can lead to candida overgrowth.... Too much of a risk IMHO. I just want to throw this out there too-- Perhaps for some the GFCF diet works in large part because it avoids candida friendly foods in general. What causes the candida problem to begin with is a mystery, and certainly different for each child. (Damage to the small intestine is a biggie). Positive results on a GFCF diet does not necessarily mean a child is celiac or lactose/casein intolerant. It may mean that GFCF foods and enzyme treatments help kill candida overgrowth and this clears the system and diminishes tics. (Corn is a big candida feeder, too BTW). I want people to understand that gluten intolerance is 10% of the population and for those that genetically can't tolerate wheat or gluten the solution is DO NOT EAT IT. Caryn

C.P. The real die-hards say no grains, esp: wheat and corn. (corn has a high mold factor), no starches (potatoes or thickeners) No peanut butter or chocolate either. No vinegar or pickled products. Basically-- no enjoyment in food IMHO. We do use potatoes and thickeners in our foods. I do feed Tigger Elisa tested oatmeal (safe for celiacs), and rice products. When I stay away from GF sweets he is symptom free. When he eats them for a time I will see either eye blinks or shoulder shrugs emerge. I would love to do the SCD but I just don't have the energy to take it up a notch-- I've got 3 kids and a dh from Eire who would just die if I took away his daily dose of potatoes and GF cookies with tea. Tigger is just getting over a stomach bug and he has been completely symptom free for a week now and eating starches but no 'sugar' foods. I am giving him store bought kefir for good flora. So I think he sweated out the toxins from the holidays and his system is recovering. I'm going to try to keep the sugars down for a while and see what happens. Caryn

Michele, Keep your chin up. I totally relate, in so many ways you don't even realize--- I can't remember how old you ds is. Sorry. My suggestions may not be relevant. Depending on his age, it may be the best thing for him to hit rock bottom and then desire to improve on his own from there. (Obviously not a good idea if he is 5-7 yrs old). But an older kid might just be bucking for a bit of independence? He might see the whole GF thing as a control issue. I know saying this is going against all I stand for at the moment--BUT-- If you let him 'do it his way' for a certain period of time (that you two determine together)-- like say, 2 weeks-- and then just take a mental holiday and let what happens happen. No supps, no diet, no nothing. What is the worst that could happen? He will probably wax, probably get in further trouble at school, have more outbursts-- But he can't blame it on you, the diet, etc... whatever. Set up rules ahead of time for expectations and behavior and then let him take total control of himself. If he fails, he fails. Then you can come together and talk about it in a supportive and non-threatening way. He may be more receptive to the changes if he sees for himself that he needs it. Also, When you do get him 'on board' then it would help to find a support group for him if one is possible. (There are a lot of celiac support groups for kids/teens in different parts of the country that actually meet and go out together socially). Again, if he is much younger this info is not relevant. As far as my Tigger goes, (age 5), our house is totally gluten and corn free, so there is no temptation at home and he never feels alienated from the family or left out. I have never 'given in' and given him something with gluten when we are out either. He just knows where I stand. That does not mean he has never 'cheated' behind my back and eaten something. When it has happened I didn't punish, just explained that there may be symptoms. He no longer desires to eat 'regular' food. He is afraid to after experiencing what can happen to him. (He has puked twice). Now having said this I have to add a disclaimer for anyone reading this for the first time: my ds has gluten intolerance and a wheat allergy. Not all kids suffering from tics/TS are gluten intolerant or allergic to wheat. Caryn

Michele, The symptoms for gluten intolerance and candida overgrowth are very similar. If your son was not officially dx'd with gluten intolerance or celiac, perhaps his problem is a candida one? Could it also be both? We cut our supps almost completely out and only give multies, fish oil, omega 6s. Tigger drinks fortified unsweetened Rice milk, but we do also give minimal dairy. We are following a GF MF and carefully selected carbs that do not exasperate candida issues (low sugars, no peanut, no chocolate, low vinegars, no pickles). We are using a little Kefir now, as per recommended by another parent, to help with gut flora. For the first time since the holidays Tigger has NO tics. (Over the holidays we ate our share of chocolate and GF sweets.) Tigger had some hyper issues too, partly due to the excitement, I'm sure, and partly due to diet. He is much more settled now. I have mixed feelings about the GF baked goods. I went down that road twice in the last nine months and both times Tigger had an increase in symptoms. I really believe our problem is both gluten and candida. You can do gluten free without the added expense if you just prepare regular meals without the added gluten. I just buy tapioca flour, potato starch, and rice flour and mix them according to Betty Hagman's recipe. Then I use the mix for all my gravies and stews. Pop me a personal message if you want to talk more about specifics. I don't want to go too far OT on gluten free stuff. Caryn

Michele, Do you belong to a GF or Celiac support group? I belong to an offlist group and have discussed issues like this with the 'resident experts'. It is not uncommon to see mood and behavioral changes on gluten if you are gluten intolerant. The longer you are GF the more sensitive your body becomes to it. The healing process is long and slow. Everyone detoxes differently. Some get skin rashes like eczema, psoriasis, and others get 'brain fog' irritability, and exhaustion when they initially go GF and then each time they get exposure. The gluten is taxing on their immune system. My ds has behaviors like you described when he has exposure. Twice he had cross-contamination and puked as a result. (Actually a relief because immediately after he felt better and there wasn't a 4 day long term 'tic fest' withdrawal to live through.) I know. It stinks. I feel your frustration, pain, and disgust with the whole situation. You just want your kid to get what everyone else gets and enjoy it and be happy. You don't want him to feel left out or weird or different. When he eats it you worry. When he has a reaction you feel guilty. I wish there was a magic wand for special occasions. Caryn

JennyC, I did the exact same thing with our pediatrician-- I brought in my ds's b-day video for him to watch. He confirmed that they were tics and was concerned he was also having seizures, so he arranged for an EEG and a neuro appt. We did both and a CBC, all came back normal. When it came to actually helping us treat the condition he fell short. He admitted that he had never had a case of tics or tourette syndrome and was at a loss for what to do. He is a compassionate doctor, new in his practice, and truly wanted to see a resolution for us, but with two little kids at home himself and an office that is hopping with patients he quite honestly did not have the time to do the research on the condition, nor to work with us on alternative treatments until we found one that worked. He worked under another doctor (who was actually my pediatrician as a child) and that doctor refused to sign a script for the ALCAT test. I was devastated, because by that time we were really reaching for straws and on our own (okay, actually, with the help of the ACN) had already figured out how to cut the tics in half. It was then that I finally decided we needed to see a DAN doc. Most GPs and pediatricians (jump in anyone who has known different) are weary of prescribing or suggesting vits and mins that are beyond the RDA for the average person. Most just refer you to a specialist (neurologist) for medications. If I had my druthers, though-- I would say you may have better luck with a GP or a D.O. rather than a pediatrician. Anyone jump in who has a different opinion. We now have a GP and he is fantastic. I know that you are stuck in a tough spot, but depending on where you live you may have options? You may find a DAN doc that will accept pay on a sliding scale or perhaps offers grants. We did not go that route but I know the option was available where we went because we were asked if we wanted to donate. Don't get stuck on the notion that a DAN doc is only for children suffering from autism. They are very well rounded, and the doc we saw dealt with so much more than that. Just a few thoughts. Caryn

Michele, I was actually looking at Houston's website today and I am wondering if I should try them for Tigger. I'm wondering if you could give me an idea about how well you think they work for digesting casein and wheat, and also for salicylates if you've tried it. (No-Fenol). I am afraid to take him off the gluten and corn free diet, but he does get minimal casein and eats fruits with salicylates (hard to avoid everything). Caryn

Welcom Bowman, It is possible that your child is getting gluten outside the home, especially at restaurants and with school snacks. Most people find that casein (milk proteins) also cause reactions in some children and so they choose to go both gluten and casein free. Studies have shown that those with disorders due to gluten intolerance have developed milk intolerances/allergies that may or may not correct themselves after a period of time being gluten free. It can take a long time to rid the body of gluten protein toxicity. It is not uncommon to have to wait nearly a month, and often times you will see the symptoms worsen in the beginning. We are gluten free and corn free for my son and this has greatly diminished his symptoms. Corn, IMHO, is an insidious food for those that are intolerant to it. You will find corn and corn derivatives in everything. We will see a reaction within 10-15 minutes of corn exposure and it will last 3-4 days. To be truly corn free you have to research all the corn derivatives out there and find corn-free brands to replace your current staples. For us a corn reduced diet is no good. We are 100% corn-free. Visit cornallergens.com for more info. I also have a blog with recipes on it and product listings for gluten and corn free stuff (also some casein free as well). It is not complete, but I add to it regularly. Food coloring is also a major trigger. And, IMO, acidophilous is not as good as Threelac, especially if you are giving a chewable and you think that your child may be reactive to corn. Just a thought based on my experience. I have recently read that kids who suffer from autism and do not find success with a GFCF diet are unsuccessful because they have candida problems and need a diet void of corn, chocolate, peanuts, vinegar, pickles, and reduced chicken. My son's IgG test revealed a gluten intolerance, wheat allergy, corn allergy, peanut allergy, chocolate allergy, and problems with brewer's yeast. Hm! Sounds like a candida problem for sure!!!! He has been on threelac for some time now and I will see a small increase in symptoms when he eats any of the above foods (as happened over the holidays). It is hard to keep them away from sweets over the holidays! Hope this helps! Caryn

It is possible that gluten sensitivities can lead to candida overgrowth. This is because the gluten protein is undigestable (in certain genetically susceptible populations). Here are some musings from Celiac.com: http://www.glutenfreeforum.com/lofiversion...php/t15136.html If your son is not already doing a gf diet it may help him in kicking the candida.

Chemar, I agree wholeheartedly with your sentiment, and I also believe what Faith said is true too. We must remember that TS is a clinical diagnosis and that the symptoms appear on a sliding scale of severity, with variable triggers and variable treatment options. I believe it is all inherited, to some degree, only the specifications of the particular gene or genes is not yet fully known. The severity of symptoms depends on environmental factors and 'luck'--- if you will. Which is why some of us on the low end of the spectrum get 'better' results from treatment than those on the 'high' end of the spectrum. Years ago I used to teach in a junior high special education class and I had a few students who exhibited tics, one with a dx for Tourette Syndrome, so I know the pain that is associated with the dx on a social/emotional level in the school system to some very small extent (as my Tigger is only in preschool now). We all need to be strong for our kids and not focus on the negative impact that this dx could have for our kids. It is just a name. Period. And as far as the school system is concerned, it is necessary to have a label to get valuable services. Especially for those of you who have younger children. You may qualify for an early intervention preschool program in your state. The dx, as 'ugly' as the media may make it sound, is a very powerful tool for support. We may never be able to change the media's perception, but then, look at the media-- what are the top stories in the headlines? Britney Spears shaves her head.... Everybody knows that the media likes to sensationalize. What we can do is affect positive changes within our communities, schools, and within our families. Get involved-- join PTA, become a room mom, encourage sports involvement-- help your child excel at something you know he/she is good at. (Tigger plays the keyboard). It will become an avenue for social acceptance and a place for your child to 'turn to' when things get 'tough' neurologically and they need an outlet. To all of you who are 'new' to this (Tracy)-- keep your chin up. I got a lot of initial resistance when we started on this path a year ago. But you know what? Once they saw the success that some of these treatments brought our son they all jumped on board. This year Tigger's teacher is a dx'd celiac. What a blessing from God. She is so on the ball about what he can and can't have because she 'gets it'. Sadly, most people don't. And Chemar-- (wrap your arms around yourself and squeeze)... that's a long distance hug from me. Without your efforts and guidance I would not be where I am today. My son would definitely be on some medication right now and probably struggling with his behavior in school (like he did last year before this all started). I have you to thank, for your ministry to strangers on a DAILY basis, despite what is going on in your personal life. You are a rock and have done so much for so many people but you do it 'anonymously' through message boards and emails. Thank you from the bottom of my heart! Caryn

I agree completely, Faith! I think you really said it well. As mothers (and fathers!) we want to keep our kids safe, happy, and healthy. I think that the initial onset of serious symptoms is the darkest time for all of us, but as you mentioned Faith, eventually we learn what the triggers are for our child. (And for each of us they are different). For many there are commonalities-- allergies to the top 4 (wheat, milk, eggs, corn) seem to be talked about a lot. Others have heavy metal issues, still others chemical/environmental sensitivities. Candida pops up a lot too. What causes the tics and what alleviates them is a mystery that we each have to work hard to solve using the tools we have available and guidance from others. Over time I think we do come to a better understanding of what works for our own kids, and that brings peace of mind-- the idea that it can be managed-- that there isn't some elephant in the closet lurking and ready to pounce at the most inopportune time. Yes, Faith-- I see tics all the time now, in kids, adults, etc... Just last week I saw a family with a very spirited 3 yr. old at the grocery store. He was very irritable, distracted, wanting to constantly get out of the cart. He ran off on his mother, and when he ran over to me and looked up I saw him wiggle his tongue. I knew that move. I had seen it before in my Tigger. It is the kind of wiggle that you can't consciously reproduce. I thought, oh my gosh, that's a tic! I bet his mother didn't know, nor did his babysitter, grandparents, etc.... I think we 'know' because we have dealt with the worst of it and we are on 'high alert' now-- always on guard against the beast that lurks in the shadows. Was his tic a problem? Most certainly not, I'm sure. As a matter of fact, to the average person, he did not look in anyway out of the ordinary. He may never, for that matter, either. We just have to all take it one day at a time, and pray, for those of us that believe in prayer-- for guidance, wisdom, and faith! Caryn