Caryn

Tryptophan lowers dopamine levels and is good for mood, but can suppress the appetite. It is found naturally in turkey and milk (milk can also cause ticcing, as many kids with tics can't tolerate milk). Some folks use GABA or inositol. Cheri knows quite a bit about this, hopefully she'll chime in.

Wow, Kim-- Thanks for the link. I know a mom on another list who uses the SCD diet for her son (which avoids all grains and potatoes, peanuts, and complex sugars-- even maple syrup). She makes her own Kombucha. I have never tried it and didn't really research it either at the time. She had a busy summer and I have tried to contact her this week and haven't heard back yet. I am very curious to know how her son is doing. Last we talked he was doing quite well. I know there is a doc in Wisconsin (I think his name is Bruce Semon?) who uses an anti candida diet for tics/tourettes. Curiously, he allows potatoes where most other candida diets do not (including SCD). For anyone reading this for the first time, SCD is the Specific Carbohydrate Diet and it is used to combat digestive disorders and autoimmune diseases caused by leaky gut. I have contacted some of Semon's patients and they really swear by the treatment which includes nystatin. We never did that because our son's corn allergy (nystatin has corn in it). I will forward on the link to my celiac group and ask for a response. I know what you mean about the lectins. I feel the same way about salycilates and oxalates. I'm not sure they are definite problems for 'all' but they certainly apply to 'some'-- and it may be a bucket issue too. In our case we saw an increasing salycilate sensitivity while we were giving our son increased doses of B6. When we stopped the high doses his sensitivity went away. I was curious about that and did some digging. I found a study that confirmed it is possible. Don't know about you, but I wish I had taken more chemistry in college.... LOL As far as ph levels, I have a good friend whose husband received a new liver 6 years ago. Ph levels are very crucial as far as they are concerned. She feeds him a stellar diet and uses baking soda (high ph) and apple cider vinegar. She also uses milk thistle. I might give her a call this week and ask her if she has ever made Kombucha. She probably has. They do organic gardening and only buy organic meats. Keeping him alive is no# 1 for them, (they've got two kids ages 4 and 2). They actually buy test strips that you pee on to get acidity levels throughout the day. When Tigger first had symptoms way back when she gave me some strips and he was very acidic. At that time this was all new to me and I didn't have a clue what that even meant. She gave me a print out about it from the internet but to be honest, it was way over my head at the time. Maybe now that I am almost a graduate of the school of tics and tourettes (ha ha) I should go back and re-read it. Maybe I will understand it better. Caryn

Yes, we are not PANDAS, but I believe the bucket theory applies for us as well. I recently made a post about Hypochlorhydria (low HCL in the stomach) and I am wondering if there might be something to it. I would love to know anyone's thoughts on that, especially anyone that has a known case of PANDAS and has a child who gets frequent infections. We used to get frequent viral and bacterial infections before the diet changes. I am wondering if low HCL is the crux of my son's problem. I am thinking about getting him tested for it but am undecided. This is the original thread: http://www.latitudes.org/forums/index.php?showtopic=3836

My son got sick last winter (I believe January?). He had a high fever and stomach upset. We did not give him fever reducers because of his corn allergy, but instead my husband and I took turns laying with him and giving him ice chips, cold compresses, etc... Prior to the onset of the illness he was a little ticcy (Something I believe other mothers have noticed on this forum). During the fever and fast period and afterwards for a very long time, he was completely tic free and in great health. So to answer your question, yes. I think that a fast can help reduce tics when the cause is toxic overload or dietary issues. I also believe that in our case the fever was instrumental in helping his body sweat out the toxins too. I'm not sure I would be comfortable forcing my child to fast for tic relief (as I'm sure most parents here probably feel the same-- a lot of us have younger kids), but there is a correlation. On the flip side, you could look at Carolyn.N's archives for her documentation on using N-Acetyl L Cysteine to stimulate the liver to detox better. It is another way to go. I do believe that the crux of the tic problem for these kids is a sluggish liver. Toxins are a problem for all of them, it seems, whether they be viruses, bacteria, fungus, intolerant foods, vaccines, etc..... A healthy liver is the key. Acupuncture is good too. We started down that road but ds was too young and couldn't handle the weekly treatments. Cheri can tell you more about how acupuncture helps. Caryn http://healthy-family.org

Did they do zinc levels on her CBC? You may want to consider doing a test for pyroluria-- she may have depleted zinc, magnesium, and B6 stores. Our son was dxd with pyroluria and it gave him issues of light sensitivity. The sensitivity goes away when he is balanced, and when he becomes stressed it can flare up again. The treatment for pyroluria is vitamin supps and less stressful lifestyle. Pyroluria is a kryptopyrrole disorder in the blood. I wrote about it a while back when my ds was first dxd. http://healthy-family.org/caryn/63 Just something else to read about, in the event there may be a connection. Testing is easy and can be done in a doctor's office or at home.

Carolyn, Congrats! That's fantastic news! Caryn

Brink, Wow. He sounds majorly stressed out and distracted, with sick grandparents and a new school. You no doubt have your plate full too. If you know that the spelling issues can be corrected with prompting, then I imagine his problem is attention to what he is doing in the moment. Have you tried talking to him about what's going on with him and how he's feeling about stuff? He might be bottling up a lot, as boys usually do, and be just totally distracted in his thoughts while at school. Poor guy. Is he worried that someone is going to die? Pragmatically, I say have him re-read what he has written after he's finished or make him type assignments with spell checker when appropriate. But to be honest, he just sounds like a kid on overload who is trying to survive right now. It may get better in a few weeks when he gets his groove on at school. As long as the teacher isn't calling home about it I would say wait and see. In a couple more weeks he may be more settled in and more ready to focus, granted the issues with his grandparents health aren't overwhelming him.

Yes, There are a lot of self-help treatments like apple cider vinegar available. I guess I am just looking for a definitive, you know? We could assume this is a problem and use a home remedy for treatment and think that it is working, or not-- But this would always keep me wondering. There is a test that is available for measuring the stomach's ability to produce acid. It involves a radio transmitter and swallowing a pill on a string. The administrator then pulls the pill back out through the mouth after I think 20 minutes. Somehow can't picture Tigger doing that one, LOL. There is another that doesn't involve the string and the capsule is allowed to pass completely through the system. I've got to research that more. I would have to ask our doctor about how much this would cost and who would perform it and where. Not sure I am going to do this yet or not. I'm still just reading about it and dh and I are finding it fascinating as we see other family members with different but similar digestive issues that may also fit with this diagnosis. I know the gluten intolerance issue is life-long, but I am forever wondering about the corn--- would hate to see him have to avoid it his whole life-- I am also wondering if the body's ability to produce its own stomach acid can increase naturally given certain conditions. For example, I know that increased bacterial or yeast overgrowth causes less acid to be produced, so in an ideal environment, could adequate acid be produced in a body that was previously diagnosed as hypochlorhydria? Maybe my son's acid levels have increased to normal levels over the last year? Maybe they are at below normal levels but are higher than before the diet. Maybe there has been no change at all--- This would explain why some folks on gluten free diets have problems eating meats, corn, soy, milk et al. They are still having digestive issues (because they are all protein rich?). I basically have to just get the book and talk to the doc after I read it. Conversely, we still eat meat but son has migrated away from soy and milk products (except goat) on his own. Those that know us well know that he has a wheat and corn allergy. My aunt (non-blood related, but recently dx'd with celiac) has a good gastro doc. I may ask her to question him when she visits-- Again, not definite we are going to do any of this; I am still just researching the subject. Caryn

Footballguy-- We are Big Bear fans, but let's not talk about Sunday's game. Just glad to see my guy out there (Orton). Been rooting for him since his rookie year and never understood the romance with Rexie. Anyway, enough on sports-- Pyroluria is a blood disorder that depletes B6, zinc, and magnesium by producing kryptopyrroles that latch on to the stores before they can be absorbed by the body. I wrote a post about it a while back when ds was dx'd with it. It is a digestive disorder according to Dr. Woody McGinnis, who I was in contact with last year. There is a strong correlation so anyone who tests positive for it should check out their digestive system. Here is a link to my old post: http://healthy-family.org/caryn/63 I am not sure how it connects with T.S. only to say that some but not all folks with T.S./tics/PANDAS also have pyroluria. Caryn

Kim, I wouldn't have a clue how to interpret genetic markers LOL, But after having three of the guys genetically screened I will say that scientists have identified a lot of gluten intolerant genes (9) and only 2 are associated with celiac disease. This must mean than the other 9 can be implicated in a whole host of other autoimmune disorders. And you, I think, are thinking along the same lines as myself. For those that are blessed with two gluten intolerant genes that differ, does this make them perfect candidates for particular conditions? You know, like creating "the perfect storm?" And when you take into consideration mutations, etc.... As far as my guys go, no bony growths have been noted so far, so I'm pretty sure we don't fit into that same category. Caryn

Low stomach acid is called Hypochlorhydria. It basically means the stomach does not produce adequate hydrochloric acid for digestion. Now I am by no means an expert on this, so take the following for what it is worth--- a novice just reading on the subject before deciding if ds should be checked out and treated for it. I became interested in the subject after seeing Suzanne Summers on T.V. plugging her new book. My dh turned to me and said, hm... wonder if this has something to do with our ds's digestive issues? So I have only really just begun the research and have no definitive opinion on it. Our son has never been tested for stomach acid and we have never attempted to treat him for this and I am not sure I will. Just learning about the subject right now..... But I like what I am learning, I will tell you that. Anyway, the theory is that low stomach acid prohibits the digestion of proteins and causes multiple food allergies and the proliferation of bacterial infections time and time again. The removal of hard to digest foods, in our case, has diminished our son's reoccurring infections. (Prior to the diet change he had reoccurring croup, ear infections, colds, flus, periods of vomiting illnesses and diarrhea.) It has also diminished the tics to the point that they are a non-issue. We do keep a strict diet and only see flare ups when he gets accidental ingestion (like HFCS) or when he is under tremendous stress. Our son had no tics all summer long and developed an eye blinking tic after he was given three freeze pops in the first two days of school. The ticcing became chronic, disturbed his eating and sleeping patterns, and lasted nearly two weeks. Prior to the diet change he had 6 or 7 tics that occurred on any given day and they happened constantly during the waking hours. He also had vocals, like a sniffing tic. He had sleeve pushing and other complex tics. We've been on the diet, strictly, for over a year and have not seen a wax on since. The diet is tough, but our son is very used to it now and doesn't try to cheat. It is inconvenient, though. So you can see why a hydrochloric acid supplement seems promising to us, but I am not sure it would make a difference or allow our son to eat a wider fare. Just reading about it right now. The topic of hypochlorhydria seems to be quite popular among alternative health sites. I am not against alternative medicine by any means, however, I always like to look at medical studies as well because I like to see controlled scientific studies before I buy into something. I found a lot of information from the Townsend Letters for doctors. Here is an excerpt that explains the role of low stomach acid in cases of asthma. I chose this excerpt because it talks about inflammation. There are also other excerpts that talk about metal toxicity, etc.... It touches on autism as well. Interesting read-- The article talks about pyroluria, schizophrenia, and others. The article states that: This may be why we've seen improvement on a low grain diet. Here's more: So that is why I have such a keen interest in HCL. Some natural remedy sites claim it is 'better' than antibiotics for autoimmune disorders. I won't believe that without proof, so I keep digging. But it is interesting. I would love to find out how one would stimulate the body to make more acid naturally. From what I've read buying the supp in the health food store w/o adequate testing could be pretty dangerous. You need to know for sure the person has low acid. Can't rely on an internet self-test, so I am reading and thinking about it. Makes sense to me. The more bacteria or yeast in the gut the less acid gets produced. It's a vicious cycle. H-pylori seems to have a strong connection to low HCL from what I'm reading. Sorry so long.

Kelly, whoa! I apologize if you think this is a personal slight toward you. It most definitely is not and there is no need to be defensive. I am absolutely not against the PANDAS diagnosis. I am sorry that my message offended you, put you on the defensive. I do not suggest that the answer is either gluten intolerance or PANDAS. I think you misread my post. I simply looked at the quote that you referenced and begged the question-- Does Swedo think that all cases of T.S. are inherently brought on by step bacteria? This is what I think you meant by the quote, is it not? Or what, exactly does Swedo mean here? This is the "bandwagon" that I am not willing to jump on, lock stock and barrel. I am referring to that notion in particular, not the notion that PANDAS doesn't exist. There is a tremendous difference in semantics here. I am not disputing the strep connection at all, just suggesting we look at the bigger picture here. Why are these kids constantly getting strep? What is breaking down their immune systems on a regular basis leaving them susceptible to constant attacks? I am not looking for a fight, only pointing out the obvious need in the medical community to look at this from another angle. Please reread my post with an open mind. Yes, I agree with the quote. Now what if there is a genetic predisposition for PANDAS/T.S., tics, whatever you want to call it, that is also tied to another, different gluten intolerant gene for a majority of kids who suffer from this condition? Yes, celiac is autoimmune. Doesn't Swedo think PANDAS is autoimmune? The particular celiac gene my son has is associated with the development of other autoimmune disorders like M.S., Diabetes, etc..... What if his other gene is associated particularly with T.S./ PANDAS, or tics-- whatever you want to call it? Do you understand my point? I am not criticizing those that are treating there kids for PANDAS. I am just merely pointing out that may be a common underlying factor for a large percentage. (Thus my reference to the narcolepsy gene). My DAN doc told me that they were making discoveries that connected autism to Alzheimer's. He said that they now believe it is the same gene only it is getting turned on in childhood rather than old age. He also said it is regressive, meaning that the treatment has to occur quickly or there would be permanent damage to the child's brain development. Not all kids will benefit from diet with terrific cures. Some will need drugs, some will need supplements, some will always have symptoms as we all have kids with varying degrees of affliction. What I am saying, is that if you have a newly diagnosed or recently afflicted child, get the food intolerance testing done and try that first, in the chance that it might work and the child could recover without the use of expensive treatments and ongoing antibiotics. If it doesn't work, then do, by all means go the other route. We thought we had a PANDAS case in the beginning because our son's symptoms were sudden and drastic. That was not the case. I am afraid that many folks here that are new to this might be reading about PANDAS and thinking that their child has it when really they may not. After all, it is a clinical diagnosis and needs to be done by a medical doctor, and second opinions are also important. There are folks reading these posts thinking they may have to fly halfway around the country to get treatment when what they may need to do is just clean out the cupboards and change the menu. It is the cheapest cure, in the long run. Do you understand my point? It doesn't devalue or undermine your experience or knowledge.

Am I reading this wrong, Kelly, or is Swedo suggesting that all cases of T.S. are really PANDAS cases, because the trigger is in the autoimmune response against the strep bacteria? The same can be said for celiac as well. I have been saying this for a long time, but often feel like it is falling on deaf ears. I read a study which featured two teens with OCD whose symptoms stabilized on a strict gluten free diet. I have posted info about the study (albeit small) before. The more I study about gluten intolerance the more I am understanding that celiac is such as small piece of the puzzle. I just recently read that 90% of nacoleptics have a particular non-celiac associated gluten intolerance gene, meaning these folks would never test positive for celiac and so docs would tell them that they have no problem with wheat/gluten and they would continue to eat it and continue to have sleep disturbance issues thinking there was no connection at all. Conversely, my FIL has sleep problems, although he is not dx'd with narcolepsy, he has some symptoms (nodding off several times during the day, waking up confused, falling into deep sleep w/in minutes, not sleeping well all night long.) Gluten is a major part of his daily diet. We had my dh and middle son tested for celiac and both came up negative. We did the genetic screen on them as well and it turns out both second son and husband have the gene that is associated with 90% of narcoleptics. Do you see my point here? Celiac is associated with only two of nine known gluten intolerance genes. What if T.S., PANDAS, tics, whatever you all what to call this, is associated with one of the nine other genes, specifically? We will never know that until there is a study and we all compare our kids genetically. No one wants to do that, because, let's face it, gluten free diet doesn't require drug therapy or antibiotics. I guess what I am saying is that there has to be an underlying catalyst that would cause the autoimmune disorder to awaken in folks. I really believe we are what we eat and if we are genetically unable to digest and process certain foods then our bodies will start to go haywire when we are exposed to them in the long term. Vaccines, in my opinion are a small and significant part of the equation as they tip the balance in most, if not all cases, but as many scientists have discovered, kids who develop autism spectrum disorders have metabolic issues that often stem from infancy but go unchecked until the stuff hits the fan. And we all know that for a large number of them the gluten free casein free diet is a key factor in improving their quality of life. One final note. I am now studying the effects of low HCL on food allergies and digestive issues. This may also play a role in the development of autoimmune disorders as low HCL can cause the proliferation of bacteria like h-pylori which I know has been discussed before on this board. I guess my point here is that I am not willing to jump on the strep bandwagon right now. I think there is way more to the story and I would love to see scientists and docs look deeper into the matter before I buy into it lock, stock, and barrel. Just my opinion. Take it for what it is worth-- Caryn http://healthy-family.org/caryn/289 (our story, for those that don't know us)

Okay, Hope-- So you have someone to talk to, Check out: http://www.vaccineexemptionlaw.com/index.jsp They are in New York!

Here it is: http://www.latitudes.org/forums/index.php?...huffington+post

Hope, If your child has a known allergy to an ingredient then I believe you can avoid the shots for medical reasons. Here in Illinois we are allowed a religious exemption. I used that to avoid giving my son the MMR. Although he has been almost fully vaccinated my doctor advised us to use a religious exemption and we handed in a blank form for the school. Every state is different. Our son was diagnosed with celiac disease and a member on the celiac forum said that undiagnosed celiacs, according to a study, showed no immunity to Hep B after the series of shots. (She is an adult who worked in the medical field and she herself was not immune after her titers.) I just want to throw this out there as a point of interest. There is a lot of discussion on the effectiveness of certain vaxs lately and also the connection to autism. There was a discussion here a while back about the Huffington Post article. You should look through the archives to find the comments and article. If your child has a genetic predisposition to a metabolic disorder and vaccines can be a catalyst then I understand your concerns. We are proof that there are families that avoid the vaxs and still get to enroll our kids in school. Caryn

SBMama, Is she off of wheat only, or is she gluten free? We initially went off wheat but soon learned through a celiac site that gluten was the culprit for our son. We saw a drastic improvement in him after being gluten and corn free for four months. We originally thought he had PANDAS but he never had elevated titers, even though he had what looked like a whole lot of the 'typical' symptoms including frequent urination and OCD like symptoms. (For example, he had to get naked and completely change into fresh clean clothes after each trip to the toilet, up to 10 times a day). Now, after 1 1/2 years on a gluten and corn free diet, dairy reduced and low sugar, no artificial anything, the most he will do is have occasional blinking when under stress. He is literally a different kid, and he used to do it all: shoulder shrugs, grimaces, sleeve pushing, sniffing, tantrums, constant hand washing, poor diet, insomnia-- I could go on and on. We no longer see wax ons anymore, except the first week of school when his kindy teacher accidentally gave him two freeze pops (high fructose corn syrup and artificial colors). He blinked constantly for about a week and a half. It petered off and now he is his own man again and sleeping normally too. Caryn

My son had frequent urination problems and does not have Pandas. He had bed wetting issues and day time wetting issues that resolved when we changed his diet. Urinary problems can also be due to physical issues as well. I had a bilateral reflex to the kidney that was corrected through surgery at age 6. Symptoms included urinary tract infections, bacterial infections, and episodes of very high fevers. I was quite sickly prior to diagnosis. I think we may need to be careful about pinning wetting issues on PANDAS. There can be multiple causes.

C.P. Not sure if your son has a corn allergy, forgive me, I can't remember-- Xylitol is most often made from corn-- I think I ran across one manufacturer that was making it from birch. I just wanted to put that out there. As far as stuffed up noses, I was the queen of them all my life, to the point where at age 23 I had to have major surgery for polyps, deviated septum, and widening of the sinus cavity. Surprisingly the surgery did not fix my ongoing allergy sinus problems (and I did do two years of shots and had the rast testing done). My ENT once told me that I would have to periodically get polyps removed. I have had NO issues this year. Yes I am still allergic to rag weed, and a trip to an Indiana farm gave me some sneezing issues, but I have not needed any oral allergy medicine this season at all, nor have I suffered from any ongoing allergy symptoms. I am breathing great and can function on a humid day without the nasty sinus headaches or other annoying breathing difficulties that always ensued every July and August. I am thinking the GF diet has helped me tremendously, but this is after almost 1 1/2 years on the diet. Last summer I had allergy symptoms. Caryn

football guy, BTW, what team are you for? I hope if you are treating yourself for pyroluria that you have had adequate testing done? I say this because pyroluria is tricky to treat and lab testing is a key component. Zinc is necessary in high doses and such doses are toxic to the average person, thus a proper urine screen and zinc status test is necessary before beginning; also a follow up test is important 2-3 months into treatment. As far as the copper question, you really should have yourself tested first. Copper is not recommended when dealing with pyroluria as far as I know. It competes with zinc. Have you read Dr. Walsh? High copper is associated with depression. Hope this helps. Our doctor told us there is a very convincing connection between gut problems and pyroluria. Once we changed our diet the pyroluria corrected itself (over time, mind you, not overnight) and eventually we were able to stop the daily vit treatments. Having said that, stress will cause it to flare up regardless of diet so lifestyle is as important as diet.

Yum! I am going to try that recipe!

The more you process corn the higher the sulfite content it acquires. Molybdenum can also be compounded into a vitamin. My ds took it daily while he was 'recovering' last year. We have since phased it out. I'm not a lima bean girl either.

Kim, I realize this thread is getting a bit further and further off topic-- But just briefly, Yes, Celiac is an autoimmune disease, and is also associated with the development of other autoimmune disorders. It is believed the celiac comes first but the diagnosis of the other autoimmune disorders are discovered long before the celiac is. In our case the gene that my son has for celiac is the trademark gene that causes other autoimmune disorders to develop. (There are something like 9 celiac genes.) Tigger won the lottery, unfortunately.

-- Not sure about a link between strep and Celiac as far as scientific studies go, but I do know that chronic infections and bacterial problems are known catalysts for the onset of Celiac. I suppose it is a chicken and egg thing. There are studies that link Gut Bacteria and Vit D deficiency in infancy to the onset of Celiac: http://www.celiac.com/articles/21605/1/Do-...ease/Page1.html We were advised to check for Pandas in the beginning but our son did not have the classic titers. He did show that he was recovering from some kind of infection but his strep titers were not abnormal. We never treated him with antibiotics for tics. He did, however, have unusual amounts of antibiotics prescribed in his early years due to chronic and reoccurring illnesses brought on by his early diet which was high in gluten containing foods and milk. He was prone to ear infections and bouts of croup. I never had him tested for bad gut bacteria, but in hindsight I imagine that it was more than likely there but never caught. For all the antibiotics he was given I never gave him probiotics at all afterwards and never restricted known candida feeding foods. I would say that adequate testing should be done to rule out Pandas just for your own sake. In many cases doctors (I've read) are now more likely to diagnose without elevated titers. In such a case I think I would then also try to rule out Celiac at that point just to be sure I have an idea of what's what, especially if it is in the family. Caryn

Lyn, Just quickly, I would suggest to your friend to have him screened for celiac disease. I wrote a blog post last year that tells our story, http://healthy-family.org/caryn/289 and in that article I mention a study that she might find particularly intriguing: In our case no one in our family had ever been diagnosed with Celiac and we had no reason to suspect it. Now I have another relative recently diagnosed (within the last two months). Our son is consistent over the last year and a half without any wax on cycles as is typically noted by Pandas and T.S. parents. He had a neck turning tic early on before we changed his diet, along with a host of other movements. Now the most we will see is slight eye blinking when there is a slip in his diet. His road to recovery was long and adherence to the diet has to be strict, but the cure for us was nothing short of miraculous. We do gluten free, corn free and feingold over here. On the first day of school (yesterday) the teacher gave our son a freeze pop-- not aware of the artificial colors or corn syrup in it. Amazingly he only had slight eye blinking afterwards. It was resolved by this morning. A year ago he would have had four or five tics and it would have lasted at least three, maybe four days. Many on this forum have asked us if we planned to stick to the diet indefinitely. My answer is YES!!! It is working beautifully. Good luck and hopefully your friend will find the answers. Caryn