Caryn

I had the pleasure of working with Brad over the last couple of days as I read his book and wrote a review of it and preview article about the upcoming movie. He's a fantastic guy and the book is a great 'pick me up' for readers. Check out my article and do consider getting a copy of the book (paperbacks are due out soon) and reading it with your child who tics. Brad Cohen’s Inspirational Book about Tourette Syndrome Becomes a Hallmark Original Movie Movie airs Dec. 7 on CBS, so set the Tivo as soon as possible!

Hi, I'm going to take a stab in the dark here and try to help. I looked at the website on the product (we've never used it), and I noticed that it contains bee pollens. Do you know if your child has a bee allergy? Just a thought. Also, I noticed that it is high in copper and low in magnesium. In our case when we had our son tested by our Dan doc they discovered that he was high in copper (which can cause depression). Anyway, copper competes with zinc. Our son has a condition called pyroluria that when it flairs can increase tics. (Pyroluria drains the blood's magnesium, zinc, and B6 vitamin stores.) Some folks that have kids with tics/Tourette's have found that their kids also have pyroluria. We were advised to avoid copper in all our supps because of this. Copper is found in many foods in our regular diets. So the imbalance could make things worse. I may be way off here, but based on my personal experience this is what I saw when I read your post and looked at the ingredient listing and RDA amounts. It may be completely unrelated. Caryn

Here's a sobering notion from: http://www.organicconsumers.org/articles/article_11814.cfm

Sarah, Gluten is a major factor for folks with genetic susceptibility like your son and mine. But I think it is only one part of it. Do you know if your son has the autoimmune disorder or just the genetic predisposition? Our G.P. guessed that our son must have full blown celiac because of his genetic testing and his recovery on the diet both digestive and neurological. In the last year he's had so few exposures that I can count them on one hand. I have a gluten and corn free house and I pack food for him EVERYWHERE we go now. It really is no big deal anymore. If he has a class pizza party (like he did last month) I just pack one of Amy's GF frozen pizzas. The party mom just popped it in her oven, problem solved! He has recovered beautifully but it took nearly a year. I myself think he really does have Celiac, but there is no way to know without a biopsy or a blood test after a 30 day trial. We are just not willing to feed him wheat every day for 30 days. I read cases of families with kids on a GFCF diet for Autism who resumed the average diet after recovery only to see regression again. We are not dealing with autism, but I fear the same would happen as far as the tics go. Just my opinion. Each time our son got exposed he got either explosive diarrhea or he vomited after eating. Those exposures were part of my learning curve months. For example, I fed him ham from a deli and he got cross-contamination because the equipment wasn't clean, and also had a ticcing outburst because, probably, the meat was loaded with preservatives and dextrose (corn derived). He also tested positive to a wheat allergy which is another fish altogether. Some Celiac's can eat wheat starch and can touch things made out of wheat no problem. A wheat allergy just makes it harder for sinus issues, etc... His very first tic was a sniffing tic and we never noticed it because before the diet he had chronic sinus issues-- he was a pretty snotty little guy LOL! For us corn is a MAJOR tic trigger. Over time I have come to believe that the heavy wheat, corn, and dairy diet of his toddler years kicked up the Celiac issues and set the stage for turning on the T.S. gene. He may have been Celiac from birth. He was very colicky and I was told to give up dairy myself (I was nursing) due to his digestive issues (gluten, I believe can go through the milk, but double check that!) Anyway, he was always getting infections-- croup was two, three times a year, ear infections, flu's.... During these years I think his gut was being slowly destroyed by the gluten which couldn't be digested because he genetically wasn't producing an enzyme to break it down. Every snack I gave him had gluten in it and many baby jars do too! Eventually his gut was permeated and the proteins got into his blood. A series of vaxs became the catalyst and the neuro effects began when he was 3 1/2. Gut healing takes time and in our experience and from what we've learned from other Celiac folks, the first few months prior to healing of the gut are pretty sickly and reactive. You have to be patient and commit to at least 6 months of strict compliance. This is my strong opinion on it. No cheating, it only compromises the healing and causes regression. It also makes it hard to pinpoint what is causing the tics (as other things can contribute too, as we all know). Once his body healed things were great. Kim and I have talked a lot about liver and pancreatic function and I really believe that these kids have sluggish livers that have a hard time detoxing. This is why they need to be on a junk free diet for success. Gluten free is only part of it. There are a lot of gluten free junk foods that we just don't buy because they have preservatives in them that are not appropriate. We also NEVER use refined sugar. If I have to bake with sugar (which is rare) I use organic evaporated cane juice. My sweeteners of choice are honey and maple syrup. There are a sizeable number of folks who are Celiac and can't handle corn either. It's possible that corn is a major trigger for your son too, but that may not be the case either. I will say that in my opinion that corn is too prevalent in this country and is a known inflammatory food. It would be best to cut back on it for everyone, but unless you know whether or not there is an allergy, it may or may not make a difference in the ticcing (but DO try to STAY AWAY from High fructose corn syrup, dextrose, citric acid if you can, and other highly processed corn sweeteners-- many folks on this list in the past have said that HFCS is a major trigger). The more corn is processed the more sulfur it contains, plus the stuff they add to it to process it is pretty toxic to the system. Some folks believe that proteins in general are tough for some Celiacs, that is a whole different can of worms (so they avoid casein (milk protein), soy, corn, and wheat). Sounds pretty crazy and impossible, I know, but we do it and I have tons of recipes and a list of products that we use. We are not deprived and are not starving. I still make Christmas cookies, cake, and many dinner recipes that are common in most homes. Now if there is an exposure (like last month when the teacher accidentally gave my son 3 freeze pops in two days loaded with HFCS and food coloring-- I'm guessing about 8 oz worth) he erupted in a chronic rapid (not slow and exaggerated) eye blinking tic that lasted two weeks and was pretty constant during the waking hours. Now prior to diet he had six or seven tics and some that happened simultaneously, sort of like a choir--- they would roll into each other and be very noticeable. Have you ever read Doris Rapp's "Is this Your Child?" Caryn http://healthy-family.org/quick-links-to-g...rn-free-recipes

littledaniel, I also wanted to link you to an article I found while researching PANDAS for ourselves. The diagnostic criteria can be taken liberally by some medical professionals-- PANDAS May Be Overdiagnosed, Contributing to Overuse of Antibiotics The article is posted in Medscape: http://www.medscape.com/viewarticle/547096 I agree with Cheri, you have to look into the many possible causes and get as much testing done as possible.

Our son had frequent urination and OCD-like tendencies prior to his dietary changes. What kind of allergy test did you get done? Was it and IgE or IgG? In our case the IgG test showed gluten intolerance and corn intolerance, two key triggers that when removed caused our son to go into what I consider 'remission'. We had a sudden onset too but had normal strep titers. We also felt in the beginning that we might be dealing with PANDAS but now I am confident that our son's triggers are not related to strep specifically or fall into the categories that are set up for proper diagnosis of the condition. Our doctors were also conservative on the PANDAS criteria. Both believe in it but felt in our case our son did not present with enough symptoms. In many cases the symptoms can overlap with the two conditions (OCD is present in both sometimes). It is hard to know. Just go with your gut instincts and be very observant of possible triggers. Strep is very common in the general population. I just recently made a new post, if you'd like to check it out. Sheila Rogers is coming out with a new book about Natural Treatments for Tics and Tourette's (she is the owner of this board). Her first book was very instrumental in helping us find the causes and for getting the condition under complete control. Our son is doing fantastic now and is completely tic free, has no symptoms of ADHD, sleep problems, or behavioral concerns. He is happy and well adjusted. It was a long, slow recovery process for us and we waded through a lot of confusing information and did try different treatments before we settled into our most successful regime. I think the anxiety is the worst when you don't know what is causing it and feel like things are totally out of control. The stress alone will make him worse. Just keep reading as much as you can about it and continue to get the testing done that you are doing. http://healthy-family.org/caryn/704

We used Bontech for about three months while we were trying to find a good doc and figuring out what kinds of tests to run. In the immediate it helped us, but what we did after the lab testing was more beneficial. We ended up getting a compounded vit based on our son's nutritional needs. He was dxd with pyroluria, and although Bontech is EXTREMELY WELL BALANCED FOR T.S., my doc was very impressed with it, their vits are low in zinc and we needed adequate zinc to combat pyroluria. They are capsules and when we ordered them they were bright yellow-orange in color. I believe they are not the same color now. We had to take a lot of them (up to 10 capsules a day) and we did see a correlation between the wax periods and the next dose, so I really believed the vitamins were helpful in keeping the tics down. At the time when we ordered the vits our son was exhibiting chronic multi-focal ticcing and it was inhibiting his daily activities. He was also not sleeping well and was very irritable in general. So, to answer your question, yes, they were helpful. If I had to do it all again I would still buy them. I am also glad that we did all the testing we did do because that was very instrumental in getting him into 'remission' so to speak, which is where we are now and have been for about 1 1/2 yrs. Our son had severe food intolerances and at the time of onset his diet consisted of about 90% of the foods he was intolerant of. What really helped in the short term, before we had all the testing done, was to feed him organic, all natural stuff and to get rid of all the artificial colors in his diet especially. We also learned through experience that he is highly sensitive to dextrose, high-fructose corn syrup and citric acid (all corn products and he has a corn allergy problem.) These three compounds would set him off ticcing like crazy and it would last for days. Hope this helps. Caryn BTW we used to put the vits in apple sauce to help him take them (he was 4 at the time). We did two in morning, two at lunch, two at snack time, two at dinner, and when he was really ticcy we added two more an hour before bed. They have to be taken with food.

I have a question for all the folks treating their kids for PANDAS. What other natural treatments are you using (besides IVIG or antibiotics) to stop the reoccurring growth of strep bacteria that causes the onset of symptoms? What research have you found that discusses the biological causes for group B strep overgrowth, affecting the brain? What are your opinions on dysbiosis and the permeability of the gut leading to proliferation of strep in the body? Do you have any other treatment protocol for stopping future outbreaks other than drug therapies such as antibiotics and medicines like topamax? What other kinds of tests have you done to rule out other underlying conditions that can lead to continual outbreaks of bacterial, viral, or fungal attacks that can lower the immunity of the child with tics and OCD symptoms? In short, are you practicing any natural remedies, dietary or otherwise? I would just like a little clarity on exactly what your treatment protocols are. There is so much confusion about the differences between PANDAS and other tic disorders/Tourette Syndrome due to the volume of PANDAS comments being posted here that deal primarily with symptomology and antibiotic and IVIG treatments specifically. Thanks in advance for your input.

Just read that dark chocolate is best, according to Suzanne Somers new book.

We did GABA last year and were told to use it at night before bed 6 days a week. Back then he was very symptomatic and the diet, etc.... was all new for him. I felt it was working to help him fall asleep at night and to cut down his anxiety. I did a little research on GABA and it is basically a tranquilizer-- has nothing to do with seratonin levels. We eventually phased it out when he started to fall asleep okay without it on the few nights I'd forget to give it. Fast forward to the start of kindy this year. We saw a major tic episode after the teacher accidentally gave him three freeze pops on the first two days of school (for those not familiar, they contain corn and he has a major corn allergy). He blinked nonstop during waking hours for 7 days and didn't start to taper off until after 10 days. I began supplementing with tryptophan at that point because he had some serious anxiety what with the blinking and all the adjustments to school. (One night he asked me how long would he have to go to school all day every day. I told him it was going to last about 12 more years. He says to me, "Then what?" And I answer, then you go to college and you get to pick what classes you want and what days you want to go to school. So he says, well, I want to go to college right now!") Anyway, the tryptophan raises seratonin levels and as a result lowers dopamine. For stress related ticcing I think the tryptophan is great. He has been so great to be around, mister congeniality. The ticcing has been gone now for a while but I am still supplementing the tryptophan each morning after breakfast.

Might want to check for Lyme Disease too.

If you google epilepsy and ginseng you will find that folks are using it for symptoms. I find that interesting because there is a connecting between epilepsy and celiac/gluten sensitive enteropathy. I just want to mention that folks who may see an increase in tics with pop may do so because of the possible High Fructose Corn Syrup used to sweeten it. The only pop I have ever found w/o it is in Whole Foods or sold in Jewish neighborhoods during Passover.

Hey, I heard from other folks that zyrtec is bad for tics? Maybe someone will jump in here. We've never used it.

Okay, it's the fourth quarter and the Bears are up by 4, so I will keep this short.... I did a quick google search and found an interesting article.... about the powerful effects of ginseng on Parkinson's Disease..... http://communications.medicine.dal.ca/newsroom/gensing.htm I hope someone else chimes in because I know that how Parkinson's is treated is much different than Tourette Syndrome..... Maybe Cheri knows? anyway, I also found a rat study that mentions that it inhibits calcium absorption and we know that calcium and magnesium complement each other and compete. Somehow I doubt the calcium/magnesium thing, though. What intrigues me is the Parkinson's connection.

dut, Since JTP mentioned the negative strep test and lyme test while symptomatic I would think the next step might be to look at allergies or see a gastro. The candida suggestion is very valid and should be considered. You know the stomach is considered the body's 'second brain' and is often the place where diseases initiate due to problems with digestion. What leads me to think allergies are an issue is the chronic sinus problems and hives, coupled with headaches and irritability. These are all classic signs for gluten intolerant/celiac folks and corn allergy sufferers. Also, I am not sure that a PANDAS diagnosis negates allergies either, perhaps it could be an underlying trigger that causes reoccurring bacterial infections in folks..... In our case, just like with JTP's, we had strep testing done and it was negative. We did treat for candida, which can be caused by a leaky gut that could be triggered by low hydrochloric acid and/or improper diet. The waxing and waning is also a tip off if it correlates with changes in the menu (for example it happens within 15 minutes to an hour of eating and seems really bad after, say, pizza). I think it is important to rule out PANDAS, but I also think it is valid to consider other possible causes as well.

JTP, Hi! and welcome. Wow.... This sounds a lot like what we went through with our son nearly two years ago. In short we discovered that he has gluten intolerance and wheat and corn allergies. If you'd like to read our story it is at: http://healthy-family.org. I checked the info on amoxicillin on glutenfreedrugs.com just out of curiosity. In our case we would have seen an INCREASE in tics with antibiotics for our son rather than a decrease as PANDAS parents notice if our son were taking antibiotics that contained gluten or corn in them. He is very reactive to his allergens and they pose a huge trigger for him. Now brand name amoxicillin is listed as gluten free, but the generic brands may not be. As far as corn allergy goes, there is only one brand of antibiotic my son can take that is safe for him. It is Amoxil. The neurologist, in our case was a huge disappointment for us. We did the gamut of tests and they all came back negative (EEG, etc...) We asked about diet and were told there was no correlation. We were offered drugs but needed to wait six months as our son needed the T.S. dx first and hadn't been ticcing for a year yet. This is what put us on the road to alternative treatments. We never went back to the neurologist since and don't plan to--- I would highly recommend you do all the initial testing to rule out seizures, tumors, etc... Whatever they want to test for, but also see a gastro doc as well to look into the stomach issues and possible celiac or gluten/casein/lactose problems. If insurance coverage is a problem you can order tests from the companies directly and have the kits sent to your home and the results emailed or mailed to you. We did an IgG allergy test (very controversial in many camps) and this is what pinpointed the corn allergy thing. Corn allergy sufferers have similar symptoms as celiacs. Hope this helps. Caryn p.s. if your son has a IgE corn or wheat allergy you may find out easily by simply putting corn starch or wheat flour in his palm and wait for a reaction. If he is allergic he will immediately develop irritated itchy palms. We use benadryl too, btw. We buy the dye free capsules (contain very little corn in the form of sorbitol-- one a day at the most has never caused our son a reaction). Now it is possible that he could have an intolerance that would not cause a skin condition, but your post makes me think that in your case the palm test might be helpful. -- also, try stopping dairy for about a week to see if it gives him any immediate relief. Most folks here dealing with allergies say milk is a major trigger.

Wow, Cheri, Thanks for the link. I remember reading it a long time ago-- you must have linked it before. I had forgotten the info it contained and really enjoyed the refresher. We started using Tryptophan again after the eye blinking fiasco this fall and found it to be a great symptom reliever. We originally tried it after our Dan doc suggested it as one of several options for reducing tics. We eventually went with GABA instead. I just want to note that tryptophan is known to suppress appetite and we did see some of that. We compensated by giving it after a very big breakfast and then offering our ds his favorite 'can't resist' foods for lunch, and feeding him dinner when he came home from school at 3 p.m. Caryn

Thanks Mary! Our son slid into the corner of the kitchen cabinet over a year ago and hurt his neck. We did chiropractic for the injury and it also relieved some ticcing. I really do believe that massage/chiro can be helpful. On the other hand, I myself had been going to the chiro for neck pain that was ongoing. The chiro helped somewhat but only hours after my treatments the pain returned. Later I began taking magnesium and it cured it! I just wanted to throw this in there. At the time I was under so much stress trying to 'cure' my son. Now when I start to get a stiff achy neck the first thing I do is take some natural calm and a b complex. Caryn

Wow, Cheri-- This really is something to think about. Has there ever been any scientific study about it, or is it just anecdotal info? If a steroid burst is so controversial folks should be aware of the possible negative results if they have a mis-diagnosed child receive treatment. I wonder what percent of folks with tics are thought to be PANDAS and what percent are thought to have T.S. or milder, T.S. related tics w/o the verbals. Has anyone done a study about that? Perhaps Sheila Rogers would know? I think this kind of information would be helpful for folks with an ambiguous diagnosis that they want to treat aggressively. Thanks for sharing-- Caryn

Little Daniel, Our son had a similar onset at 3 1/2. We later found out that he is celiac. You can read our story at: http://healthy-family.org/caryn/289 We saw a lot of disturbing tics and OCD-like symptoms at onset. He has been stable and happy for over a year. He had one small setback this fall after getting three freeze pops at school over the course of two days. This gave him a chronic blinking tic for about 1 1/2 weeks. He is now back to himself again. He has no phobias and is doing great socializing at school. If you have any more questions, let me know. I have to go now and haven't got much time. Caryn BTW-- dairy will resolve in 7-10 days, but gluten takes at least a month for improvements to be seen. In our case it was nearly 5 months, but we were also eliminating corn and I was feeding him foods with corn inadvertently in the beginning because I didn't know better.

Sarah, I can't help you much with the Pandas info. I will leave that to other folks with more hands on experience. I assume your allergy test was either an IgE or IgG test? I'm not sure if you read my post about HCL, but if you feel like you are running in circles after a while maybe you may want to read it and see if it may apply to your situation. I just bought Suzanne Somers book today and will be reading it tonight, so I haven't any additional info to add other than what I have already posted. The theory is that low stomach acid might cause typical American dietary foods to pass through the system only partially or undigested (as our diet is highly acidic), thus causing chronic bacterial and viral infections and nutrient imbalances. I've no personal knowledge about it yet, but am looking at this theory closely because it can cause multiple allergies, and this is what we are currently dealing with in our situation. The diet has done wonders for our son but my feeling is that if the crux of the problem has to do with low stomach acid, then maybe our son's diet can include more foods without increasing his symptoms (which is currently what happens). Anyway, there is a correlation with bacterial overgrowth with h-pylori and strep. Another thing you may want to research is the problem of lectins. Kim recently posted a link and I forwarded it to my celiac group. The group's moderator was very intrigued and said that there are loads of people who have broken off from the celiac sprue association. Many celiacs do not do well on a gluten free diet--- they need to remove other foods as well for wellbeing. This is how the lectin theory fits in. My HCL link: http://www.latitudes.org/forums/index.php?showtopic=3836 Kim's lectin link: http://www.bmj.com/cgi/content/full/318/7190/1023 An additional link about lectins from my celiac group moderator: http://www.krispin.com/lectin.html Sometimes it is good to 'think outside the box' so to speak. I understand the frustration when you are doing something and it doesn't appear to be working. Don't give up and realize that you are your child's best advocate and this may mean doing a lot of documenting at home for a while to see if you can find correlations on your own. I learned the hard way a long time ago not to put all my stock in what the doctor says. I have a high degree of respect for doctors but also realize that at the end of the day they are not the ones that are dealing with the disease on a daily basis. The best doc I ever encountered had a son with Autism and just 'got it'. He was very forward thinking and open minded to all my research and personal findings.

Sarah, Could you give a little more detail about the diet and supps you have tried so far? Also, what tests have you done and what dx did you get? Also, what kinds of symptoms are you seeing mostly? What in your opinion seemed to help the most? Least? Caryn

Maybe try giving her a choice and also give her ample transition time before she has to switch to a new activity. I am assuming she may be a bit advanced for her age, judging by her age compared to classmates and her grades..... It is possible that she has a hard time transitioning away from something she is really into to do something she has to do. Our ds does well when I offer him time frames and give him options. If he is busy building Anakin Walker's space ship and dinner is ready soon I will remind him that he has to finish in 20 minutes so that he can help me get the table set. If he isn't quite done after 15 minutes I will go and help him finish before time is up and we usually have a nice chat while we build.... It works better than telling him to stop what he is doing right now and come to the table to eat. I would always get opposition because he would feel like I don't "get him". I used to set the kitchen timer when he was too young to understand the concept, but now he can tell time and he gets it. She may just want a bit more independence and more time to do things that she is really into without interference. My ds needs time alone when he gets home from school and I have to keep the small brothers away for the first 15 to 20 minutes while he has his 'down' time. If I don't do that all they do is fight until dinner because he is frustrated and needing space and they don't understand that or give it. Just a thought. It may or may not apply in your case.

Kim, Sort of off topic, but I read an interview article with Aidan Quinn where he talks about his daughter Ava and how she contracted Autism after an MMR vaccine. She is now nineteen years old. I made a blog post about it at http://healthy-family.org but it was also part of a larger interview about his career at: http://www.independent.ie/entertainment/ More fuel for the fire...... BTW, my youngest son will be 2 1/2 at Christmas. He has only had two vaccines in his life (thanks to the eldest boy's dx). He was the healthiest baby of the three boys, by far. Caryn

Kmccoy, Yes, we have been successfully managing our son's chronic multi focal tic disorder (was dx'd before 1 full year of tics so no T.S. dx) with diet too. We've been doing it for about a year and a half. We are gluten free, corn free, soy free (this is not due to allergy, but by my son's personal preference), and dairy reduced. We do no artificial ingredients either and buy organic when possible (especially fruits). In the beginning we did what they call a candida cleanse diet. We also used a lot of supps in the beginning. Our son used to have six or seven different kind of tics (including vocals like sniffing and throat clearing) and now when we do see tics we only see eye blinking or nose twitching. It used to be constant, all day long. Now it is after too much screen time, when tired, when stressed. Our son went all summer tic free but was exposed to HFCS and yellow #5 on the first day of school in the form of 2 freeze pops. This caused him to erupt in constant eye blinking for about a week and a half. This really shored up my feelings about the diet, it's role in wax and wane cycles, and the power that we do have to help alleviate symptoms. I use enzymes with cow's dairy and he gets it rarely. We do use goat milk. What foods do you avoid and what kind of success have you seen? If you want to read our story it is at: http://healthy-family.org/caryn/289 Caryn