Caryn

Mary, There is a strong connection between TMJ and gluten intolerance/celiac. My aunt suffered for years before a wise doc finally dxd her with celiac and she is so much better now after 1 yr on the diet. Same goes for the headaches. That was a classic symptom for me. Onset was usually 1-2 hrs after eating and was so bad I would be light sensitive. Didn't happen all the time but when it did it was horrible. I eat like dxd ds and haven't had headaches in two years. Caryn

We are completely symptom free for almost 10 months now. Ds age 6 1/2 (47 lbs) gets occasional teeth grinding but that is it. We have a low stress house and practice gentle discipline. He is happy and well adjusted at school. I switched to Country Life Basic B capsules and give him about 1/3 of a capsule a day (sometimes miss). With his allergies this seems to be the best fit. Has more B12 and B5 than most. Isn't too high overall in doses. We do magnesium at night with melatonin. He is sleeping great. We do fish oil daily (also supposed to help with allergies). We do vit C, vit E, in winter vit D. We also have been doing NAC for about 2 1/2 mos and during that time have ate at restaurants and have tried ds with foods that were at one time forbidden and he is still doing great. This is a major improvement for us. We did an OAT test that showed low glutathionine and learned that it is associated with Pyroluria, which our son is dxd with. We no longer seem to need the benadryl I don't know if it is a seasonal thing, if it has to do with having gut out our moldy basement, or the NAC. Last winter we had flooding and had to gut out our entire basement. (Old house, some mold was there behind the drywall for a while. The previous owners had painted the concrete walls, a big no no if you want your concrete walls to breathe and not harbor mold). After hearing Doug's talk at the conference I really think in our case the main trigger was fungal. We never did testing like we should have when he was reactive but I wonder if that wasn't a major contributor, especially since I myself have responded so well to the antifungal diet. We still avoid corn (high mold content), most grains except rice, yeast (like the plague) and many processed products in general. I don't buy as much organic now but do wash the food with grapefruit seed extract if it is conventional. Bonnie, get one of his books and read it. It is really eye opening. (Or look for his show, "Know the Cause", on cable T.V.) I wonder if the IgG test was instrumental because the allergies set off the tics or because the allergies also so happened to be fungal feeding foods and removing them helped balance out our son's system. Caryn edit: sorry, forgot-- he also takes zinc.

Char, I read a long time ago that the more processing corn goes through the higher the sulfates in it. Makes sense to me. My son still gets a bad reaction to high fructose corn syrup but has been exposed to corn flour without episode last spring. I think a lot has to do with Carolyn's theory. My son's immune system right now is really strong. I anticipate that when it weakens he will again get symptoms. I agree that it is connected to liver function. I started the NAC supplement recently and have found that with it I no longer need the Benadryl. Why? Not sure. Maybe the NAC affords him a 'bigger bucket'? Maybe his spring allergies are not so bad anymore. Dunno. My hunch is that the NAC is helping his body produce more glutathione and this is helping his liver detox more efficiently. I give a very low dose. (About a 1/4 of a capsule a day). Remember, I don't do as many vitamins as Carolyn. My son is much smaller (only 6 but under 50 lbs), and I have him on a strict diet for Celiac. So these are two different avenues of attack for what seems like the same underlying problem. Not everyone does a restrictive diet. One may argue that the supps are expensive, but so is buying gluten free snacks.... Six of one, half dozen of the other. Yes, I agree with Cheri on the high B's. It is not for everyone. Just start out low and work your way up to the point where you see a difference. We started out with four a day (I believe-- been a while) and wound up doing 10 a day. It really made a difference on its own without any other interventions. I know it works. But like I said, it isn't a miracle cure. A good non-toxic diet is essential. All these kids will wax if they are given too much artificial stuff. For us the yellow dye #5 was atrocious, to the point where I stopped buying pickles and canned peas because I couldn't stand the way it made my son feel/behave, let alone tic. Now pickles and peas are available w/o dyes. Hm...... And like Carolyn.N, we do Omegas (fish oil), probiotics (kefir), NAC (n-acetyl cysteine) and Vit C. We also do vit E (for immunity), enzymes (not so much anymore but they were vital in the beginning to just get him to digest his food properly), and vit D (in the winter months as we are in a Northern climate). I can't remember the dosage for B5 and B12 on Bontech's TS-control but the supps I currently use are higher in those two than most. B5 is supposed to help support allergy problems. I found that to be true with my son.

We used it. We have never taken clonidine, though. I think there may be drug interactions with some supplements so you should check with your doctor about that. We have allergy induced tics over here and later learned that our son has celiac and severe wheat/corn allergies. When we modified his diet we eventually learned that the high doses in the TS-Control were no longer necessary as his body was absorbing nutrients better. But we used Bonnie's TS-Control for about a year. He now is on much lower doses of vits and has been symptom free for quite a while. So I keep my fingers crossed. He was originally dxd with a chronic multifocal tic disorder and had behavioral issues (onset age 3). He is now 6 1/2 and we do a low dose of Country Life Basic B capsules (higher B12 and B5 than most and this seems to agree well with him). We used to use Benadryl for allergy issues but now he no longer seems to need it. I wonder if it is because of the B5 levels in this supp? If you are new to all of this I think the TS-Control is a good start. It got my son to a functional level while we took the time to sort out what the causes could be. So I do believe that they work. We still saw rages even with the vits if he ate foods with chemicals, especially MSG and maltodextrin, High Fructose Corn Syrup. We do not have inherited TS in the family but we do have digestive issues and ADHD issues, Learning Disabilities, both associated with gluten intolerance and Celiac. So that is our history. I think it is important for you to know as you consider your options. The other thing you could try is doing a no artificial colors, flavors and preservatives diet (Feingold or Failsafe). This has been very important to my son's recovery. With the vitamins it helped us keep our little guy in preschool (they wanted to kick him out for bad behavior toward others). He had missed two weeks prior to us starting the vits and Feingold diet. We were pretty desperate, and pretty surprised when it actually helped. (In our case the neuro wanted us to wait 6 months for a script.) The vits and diet worked so well that we never needed the script. He now has no behavioral issues. He is still on the diet and has to stay on it or the tics/behaviors will emerge again.

Kim, This study is buzzing around all the celiac groups today. Most Celiac folks aren't putting much stock in it because they claim the study was done on 'healthy' folks. Celiacs aren't 'healthy' to begin with. I read another study that showed that Bifidus L. supplementation allowed Celiacs to avoid intestinal damage from gluten ingestion. But all will tell you that the nasty effects of eating wheat far outweigh any study that would tell them that they shouldn't because it reduces the good bacteria in their gut. Interesting study. I question what they defined as a 'gluten free' diet. We aren't grainless here, but are low grain. I think that the gluten free only diet is just as bad in many ways because of the sugar, starch, yeast loving foods that it contains. So, yes, I can see how a packaged food diet that is gluten free can show this kind of result. I would like to see a study like this using the paleo diet instead. I bet the results are totally different. It's all in the poop. If it's healthy then you know you're on the right track. Bad pun, I know.

slightly OT, my girlfriend just emailed me a couple of days ago after finding out that baby carrots are soaked in chlorine solution. This is why they get slimy and form white dew drops after being in the fridge a few days. They are actually made by a machine from large carrots and the chlorine is used to protect them from going bad-- as the skin has been peeled off. Gross, huh? One more thing we will have to avoid now. Thought I would share.

Mom2a, You have a very nice website. I just wanted to say that it was my experience that too much vit B6 caused a salicylate sensitivity in my son. I had read about that online somewhere a couple years ago and decided to lower his dose. I noticed that your supplements have 75 mg of B6. For my son (less than 50 lbs) that is way too much. His dose is 25mg and he does just fine and no longer has problems with salicylates. We no longer do a separate B6 but use a B complex that includes adequate B12. We do a special low grain diet and avoid all artificials too, as your website suggests. Our son was diagnosed with Celiac and once his gut healed I noticed a huge change in his ability to absorb nutrients and was able to reduce or eliminate many supplements. We still do high Omegas, magnesium and amino acid supplements as needed. Our regime is pretty much anti-fungal but we go off the plantation from time to time. I agree with you that sugars and sodas are a big trigger. Corn is our biggest culprit over here and we avoid it like the plague. Caryn

Kelly, Did you watch the full video presentation? It is an hour long and she really got into the details of her studies at the end of it. To say that she won't endorse IVIG because of red tape is presumptuous. I think we have to give her credit for having as many years experience as she has. She discussed a clinical study that showed it wasn't any more effective than the other treatments. She also clearly stated that it should only be reserved for 'worst case scenarios'. Additionally, she stated that the risk factors were often too great considering the end result was often only a temporary improvement. She also CLEARLY stated that if IVIG was not successful after the first course that a second course should NOT be considered. I think folks need to be careful promoting IVIG as a 'miracle' cure. It is good to weigh the pros and cons and know full well what the options are. Over 1000 blood donors are used to make the plasma serum and there are several risks, such as anaphylactic shock, for example. The treatment doesn't protect the urinary tract and can cause renal failure. If you have a child with comorbid issues these things need to be carefully thought out. Also, a weakened heart may pose serious risks that might be overlooked if it hasn't been screened for. I think Swedo's stance is conservative because she has had much experience using IVIG and has seen the damage it can do. She specifically mentioned a case where such damage occurred in the video presentation. Whether or not Hepatitis C infections were only prominent a decade ago makes no difference to me. The risk is still present. You are counting on them screening for hepatitis. If there is another infectious agent not screened it will be injected into your immune compromised child.

Yes, those are the ones. I give only 1/4 of a capsule a day and that is enough for him. You may need more if she has malabsorption. Just try and see. The tingling was my own experience and the capsules were a much higher dose than these. I was getting tingling in both feet when sitting and my hands at night in bed. My son weighs about the same as your daughter, a smidge less. I give the B vits in the morning with Kefir, orange juice, NAC (every other day), and zinc. He eats magnesium rich foods during the day but I do not supplement with mag in the morning. He also gets fish oil capsules. At night he gets Kirkman Labs Magnesium with melatonin (two caps--you can actually do up to three, I think, at that weight) and he goes right to sleep about an hour later. The Dan doc told us that the Bs at night might disturb his sleep and that magnesium relaxes you to sleep. He had us on this schedule in the beginning and although I have changed brands over time I never changed the schedule. I have tried taurine, inositol, and have used tryptophan when we were off all dairy products in the beginning. The thing that bothered me about these was my son's lack of appetite. When he had the chronic daily ticcing they did seem to help keep things mild. Maybe the poor appetite was just a coincidence. Anyway, he is eating great now with the supps he is on and is currently symptom free. Over time I have noticed a drastic change in the amount of vits he needs. In the beginning he was on much higher doses than he is now. You know, I never had him tested for a B12 deficiency, but it is funny how of all the B vits I have tried him on this one seems to suit him the best. Caryn

Did you catch her one hour lecture at the DAN conference in October 2008? Sheila Rogers just sent it to me for review. http://www.autism.com/danwebcast/video.asp...;videonumber=84 Dr. Swedo talks at length about symptomology, Chorea, Rheumatic Fever, Autism, and of course, PANDAS. She discusses her work in detail and gives a good summary of information on the subject. It is a technical talk but I still think folks who watch it that have little or no background will get something out of it. What I found most interesting is her reticence toward IVIG. She said it should be reserved for worst case scenarios due to the risk factors involved. She had patients who contracted Hepatitis C from contaminated donor supplies, for example.

B5 is also called pantothenic acid. We are currently using Basic-B caps by Country Life. Our local Health food store runs specials on that brand once a month and we get 20% off on them. It lists: "vitamin B complex with extra amounts of B-12 and Pantothenic Acid." I use about 1/4 of a cap for my son who weighs about 50 lbs. It is a good amount for him.... and the caps last much longer that way. Too much B vitamins without enough magnesium will cause tingling in the hands and feet. I learned this the hard way a couple years ago when I bought a B cap brand that was much more potent than I needed. I think I read somewhere that fungal infections will also cause tingling too a while back. We have used other B vitamin brands and formulations. He used to have a problem with bruxism (teeth grinding) but this brand has really stopped it. I sometimes skip the vits on the weekends and he will almost always return to teeth grinding if he misses a couple days. Right now he is in the middle of a really long wane period and has not ticced since last fall. We adhere to the strict diet 100% and he is on board with that. He has eaten out a few times in the last couple of weeks and so far so good. I am also using the NAC every other day (in 1/3 cap dose) for low glutathione levels-- Caroline.N has written a lot about that. I think that was the missing piece for him. He was dxd with pyroluria and Dr. McGinnis responded to a recent email I sent him and confirmed a recent discovery that low glutathione levels are present in pyroluria due to oxidative stress. The low glutathione seems prevalent in Tics/T.S. So you should be feeding her foods high in antioxidants at the very least for a similar effect. Fresh fruit and veggies, raw unsweetened is best. Are you sure the rash isn't a yeast rash? When one of the kids has a dermatological rash of some kind I usually google it for images to see what it could be. All you have to do is type the word "image" or "picture" and then words to describe the rash "raised bumps" "flat" "pink" etc..... It is very helpful. Have you done the OAT test with Great Plains? (Organic Acid Test). It is very helpful in determining glutathione levels and also nutrient deficiencies (B's, C's, etc.....) The test will also tell you if there is a bacterial or fungal infection. It is a urine test.

Myrose, According to Doug's book, all nuts are fine: almonds, pecans, walnuts, cashews (although these are ones that kids with nut allergies are highly allergic to, I know that), pumpkin seeds, and sunflower seeds. He stresses 'raw'. He says peanuts and pistacios are bad and of course any nuts that are 'rancid'-- old and stale. We store our nuts in the freezer and have never had a problem. Caryn

Myrose, Start with trying Benadryl dye free capsule and just see if that helps improve the tics. If so they are histamine related and an allergy test would be a good idea. B5 is good for allergies, in the meantime. Check to see if it is included in your B complex. It could also be fungal related. I especially think this after hearing Doug's talk. April, May, June could kick up due to higher mold count. Check the weather stats in your area and see if the tics wax on a day when the mold count is higher. Caryn

I'm working on doing something official with Sheila and Q's mom. So you all will have to be patient on that. Here is a teaser for you all. http://healthy-family.org/caryn/1260 This is from Doug Kaufmann's talk. I also read two of his books on the plane on the way home. I did a little of my own research to. Was amazed at what I discovered. Toxic mold is a major issue, and so understudied when it comes to human illness. In short: Corn is the most mold infested crop..... and is right up there with beer and peanuts. I will stick my neck out and say that anyone who's symptoms started after a major illness or course of antibiotics may do well to eliminate grains for a while to see if that helps, regardless of allergy testing results..... just my two cents.

abbe, Have you tested for pyroluria? Have been hearing a lot today about zinc deficiency here. Needs to be monitored by a doctor because toxicity is a problem if you overdose. Low glutathione is indicated in pyroluria. We have recently started NAC. Must be taken with C. Caryn

I'm here at the conference-- Listening to Dr. Shaw of great plains. They will sell the video, in piecemeal and in it's entirety so you all can pick and choose. $25 each talk. Right now Dr. Shaw is discussing allergies and MSG etc..... I want to tell folks that Dr. Shaw is saying that dog and cat allergies play a major role in some kids and it can be so severe that they will react when someone with cats comes to visit with dander on their clothes. Something we don't ever discuss here on the board but may be an issue with some. He is promoting the IgG food allergy/intolerance type test. He is talking about milk allergy causing seizures.....learning disabilities, writing problems. This conference was well worth the money. It was so great to meet Sheila Rogers in person and shake her hand. I welled up with tears when I explained to her wonderful husband how much her book meant to my family and how indebted I am to her for her life's work in this field. She wants to start a foundation. She needs our help. Anyone who knows anyone that might be able to help her please get in contact with her. We have to spread the word. I will do a summary blog post when I get back about the whole experience. Caryn

Anne, We started with at least a cup a day, spread out. I have reduced it down to about 1/2 cup a day now. I don't measure anymore. I mix it in a breakfast smoothie. My four year old loves to drink it in a shot glass. I buy only the plain kefir. I do a blended drink every morning. The favorite mix is: mango chunks from Trader Joe's, a ripe banana, some fresh squeezed orange juice, kefir and blend on high. I will often add the B vits to the smoothie. After it is all well blended I add raw egg whites to it (pasteurized-- no salmonella) and blend on low so it doesn't froth up. The whole family drinks them and loves them. They are pretty filling too and keep ds from getting hungry before lunch (he also eats breakfast too). If you need to avoid dairy you can use Kombacha. I actually found it at Whole Foods. Some folks make it at home. It takes 30 days to ferment. It is great for digestion and includes probiotics too. (Made from tea rather than milk). Caryn

Same phenomena here. I was giving HUGE megadoses to ds in the beginning and they were helping but he still had symptoms. It wasn't until we were a few months into the new diet that I began to notice those same doses were now making him sick and he was getting 'overdosed' by them. Now he is on much lower RDA doses of vits and has no symptoms. I attribute it to a proper diet and daily kefir too. His gut is healed now too, and that has a lot to do with it.

We used the IgG food intolerance test through ALCAT. Our son's intolerances coincided with what would be considered a good anti-candida diet-- in other words candida causing foods were what he was largely allergic to. Shaesmom mentioned testing negative on celiac screens multiple times. I want to mention a word on that. There are nine gluten intolerant genes and only two are associated with celiac. A negative celiac screen does not necessarily mean gluten is okay to eat. Our whole family is gluten intolerant. We haven't tested the three year old yet (but he eats like the rest of us). My son who was dxd with a chronic multifocal tic disorder has the celiac gene and one other non-celiac gluten intolerant gene. If more people had genetic screening done it would be interesting to see if the other non-celiac gene was a common factor in these kids. The celiac may be a coincidence. My 4 1/2 yr old does not have the celiac gene and has a perfect digestion system. He has two gluten intolerant genes (neither the same as my dxd son) and one of the 4 1/2 yr olds' is associated with narcolepsy (which he doesn't have). Cheri's son was food allergy tested twice and was not found to have allergies. I do not know if it was IgE or IgG. He is dxd with crohns disease (which has to do with digestion). She will tell you that they had problems with yeast. Most others find there are allergies/intolerances present when they do actually do the testing. I will say that low glutathione levels can cause allergies to develop especially when the diet is low in antioxidants and the body is under oxidative stress. Many orthomolecular docs write about this phenomena. Blood brain barrier stuff is prevalent in Celiac studies and is a well known phenomena in many diseases. There is something written about in celiac circles relating to zonulin. It is a protein that is 'gate keeper' of the G.I. Tract. It would be interesting if this were also a factor in these kids as well. I can think of many possible studies.... too bad there is little funding/interest. I would love to start a foundation to raise money for these kinds of studies. There is more to the story than what meets the eye. My son's recovery is a mystery and I would love to know the details of why and how from a scientific standpoint. There is definitely some kind of correlation there. Who knows what it is until more research is done in the blood-brain area of science in patients with T.S. et al.

Hi All-- I wanted to add a bit on inflammation and immunity quickly. Clare wrote a few years ago about OAT testing results and food intolerances/avoidances in a thread. I latched on to the latter but only recently discovered the former. The group used a specific diet and supplement regime and many saw significant improvement. GFCF was part of the protocol for the majority. In the OAT thread the group found that what they had in common was low glutathione levels. This means poor liver function and poor liver function means poor immunity. I didn't uncover that thread until much later. It makes so much sense to me now, especially after all that Carolyn.N has done with her son (who never went on a food avoidance diet like GFCF but only does all natural non-chemical foods-- with many instances where she has allowed him to wander (aside from MSG). She uses n-acetyl cysteine, a supp that helps increase glutathione levels and thus boosts liver function and the immune system. When the immune system is under stress it begins to break down and disease sets in. This is when organisms begin to thrive and allergies/intolerances develop and multiply. So some of you may not have food allergies/intolerances..... YET, as the disease state that would cause it (yeast, clostridia) has not yet emerged as a problem-- as Pat states. As far as inflammation goes, there is a whole host of information out there about anti-inflammatory foods/diets/supplements. There is much info about it. Sugar, especially refined sugar, is particularly damaging and is 'food' for yeast. I agree with Pat on the issue of antibiotics and IVIG. Each parent has to make the decision when the need arises to do what is in the best interest for their child and in some cases that means antibiotics and/or IVIG. Caryn

Without knowing what the rash looked like, how long it persevered, or any other details, it would be hard to say what it could be or if it is related to the tics. Rash can be viral (which can lead to ticcing behavior up to 4 weeks after the attack). It can't hurt to get tested for PANDAS as EAmom suggested. I would also look into candida as well. Just a hunch. My son got ticcy when he started school. It passed as quickly as it came. Stress is a major, major trigger. When the body is under stress it produces more cortisol. He is probably just having a reaction to all that 'adult' stress. Moving cities is one thing, hopping a continent is another. Try giving him epsom salt baths. This might help.

sorry, double post

Shy, I'm a yank so I had to quickly run to the kilo converter. She weighs less than my boy who is the same age and pretty slim build. I see that there are no fats in her supplement regime. My son is dxd celiac and he had the same situation as Michael-- undigested food in his stool when he was dxd 2 years ago. I don't know if your dd is celiac or not, or what her digestive history is, but it is well known in celiac circles that digestion of dietary fats is a problem with celiacs who have flattened villi and intestinal damage. Many do high doses of fish oil, borage oil, primrose oil, flaxseed oil, etc..... Be encouraged that if you are dealing with intestinal damage and imbalanced flora things will improve in time. Be patient. In time, when she is 'healed' in the gut she may return to a much more varied diet. We originally had 17 allergies/intolerances on our IgG and now he only avoids 3 things. Time will heal her. I would suggest that you check for fat absorption if there is a test available that can measure that where you live. Here in the States we use Enterolabs and they test the stool. (We are waiting for our results as I type). All the best.

We use benadryl. I just want to add that benadryl dye free capsules is probably the safest bet as it avoids artificial colors and they are pretty much a universal trigger.

Yes, that is exactly my thinking. In essence, it is all the one, so to speak. We know there is not a 'one treatment fits all' scenario here, but I do believe there is much overlap between the Tics/OCD/Pandas/Pitands/T.S. diagnoses and each child deserves testing in as many areas as possible to determine a multitude of possible treatment options available-- above and beyond what is specifically designated for a particular label-- in unison, rather in isolation. I have always said my son is not PANDAS. His condition is definitely immunologically motivated. Right now his immune system is very strong (he hasn't been sick at all this year) and he is completely tic fee and has no signs of OCD or ADHD. Kim has often written about the sulfation system and Carolyn.N has written at length about n-acetyl-cysteine. We recently did OAT testing and learned about a glutathione deficiency being tied to pyroluria. Wow, the lightbulb really went on when I began to research that. Glutathione is necessary for proper immune function. I am going to step out on a ledge here and suggest that maybe treating the strep in isolation (ie: antibiotics/steroid burst/IVIG) is an act of futility in the sense that it is acting as a gerbil does when it spins inside a wheel. Stop the treatment and the symptoms start. There is no healing of the immune system when this is the only treatment protocol used. Test for the deficiencies, find the underlying problem in the sulfation system (whatever it may be-- we all have different triggers) and ultimately stop the reoccurring infections and no longer need the gerbil wheel in the future.