Debbie1

Hi everyone, My son, who had been doing so well, has had a dramatic increase in tics over the last two weeks. He has been in day camp the whole summer, and swims daily there. He is scheduled to go for two more weeks, but I am debating pulling him out early to try to get a handle on his tics. I know that the pool is a trigger for many here. He did not react immediately to it, but I am wondering if prolonged exposure to chlorine might be triggering him? Has anyone experienced this? At the start of the summer, he broke out in a rash from the sunscreen we were using (Neutragena Sensitive Skin). I switched to a brand recommended by the health food store (Sun Away). His skin is better with this sunscreen, but I am sure it is not compeltely chemical or preservative free. Does anyone know of suncreen being a trigger for tics? Thanks, Debbie

Thank you everyone for your replies. He is not allergic to almonds and I will definately explore the oxalate issue. In the meantime, no more plums or figs for him! He seems to be doing better this morning, although the true test will be when I see him later in the day.

Overall, my son has been improving and we continue to reduce his medication (slowly) as well as follow a mostly GF diet, and eliminate all artificial ingredients and preservatives. Every time I look at him, I think to myself - Wow! he has come so far. Yesterday he came home from camp and had a snack. Almost immediately after eating, he complained of stomach ache followed by an almost immediate increase in tics (in his case, hand clapping). His snack consisted or two small plums (not organic this time), a bite of a fig (which I am not even sure he swallowed because he did not like it), and a small homemade chocolate chip cookie. He has had plums before without any reaction I can identify. The fig was new. The cookies I have made before. The only difference with this cookie was that I used a different combo of GF flour - specifically Goya enriched rice flour (I had been using a different, more grainy rice flour that no one in my house liked, potato starch and tapioca flour.) In my more recent recipies, I had been using potato starch alone and omitting rice flour and tapioca flour all together. Can anyone give any advice on what he may have reacted to? His tics remain worse today. Thanks for your help. Debbie

Cheri - Although it has taken me a while to reply, I wanted to let you know how helpful this list is. I had the list of ingredients that always contain MSG, but did not have the list of "Often Contains MSG" and have often wondered whether these ingredients are safe when I have seen them. Thanks for taking the time to send this list to me. Debbie

Nan, I am so happy for you! I don't post a whole lot, but do read here almost daily and am so happy for you that you have found what works for you. We have also found that dietary changes make significant improvement. I hope that one day all of the doctors will catch on to this idea and recommened it to their patients! Debbie -Nan

We have not tried supplements yet, but we do eliminate all artificial colors, flavors, preservatives, high fructose corn syrup and eat organic as much as possible (as do so many here) - it worked wonders within a few weeks. I highly recommend giving it a try. If you are not sure where to start, this site has lots of information. If you do a search, you will find a post with all of the hidden names of MSG - I brought this list with me to the grocery store when I first began. Make sure you recognize all ingredients on packaged foods as pure food ingredients. If you are not sure what an ingredient is, don't buy it. It takes some effort at first, but becomes much easier with time. Its eye opening to take a good look at what is in much of what we eat! Debbie

Hi Jenny, We are new to this gluten free thing too. From what I understand, the problem with oats are that they are often cross contaminated and so many people who are gluten sensitive avoid them. My son was only mildly reactive to gluten when tested and did not react to oats at all. So for the time being, we were told its is ok to keep them in his diet. Debbie

Hi Jenny, Can your daughter have oat flour? If so, I just made a recipe that was not bad! Let me know if you want the recipe. Debbie

Hi everyone, In my search for gluten free items several people have recommended particular brands of gluten free pretzels. These pretzels list "yeast extract" as an ingredient. Until now, I have avoided yeast extract - I read somewhere that it contains MSG. Does anyone have more information on yeast extract? My kids are big pretzel eaters. Thanks, Debbie

Hi everyone, I have come across several doctors and articles lately who have disputed the reliability of IgG results. Can those who have done the IgG testing please confirm for me that after eliminating the foods that scored the highest, they saw direct results? I don't mean to sound negative. With all of the negative feedback I have gotten regarding this test, I guess I just need some encouragement. Going GF is HARD!! Thanks, Debbie

We just asked this question a couple of days ago, but not in relation to vitamins. We were told that high fructose corn syrup is worse, but that corn syrup is not good either. We avoid it whenever possible.

I am fortunate that my son's tics have been under control for the last several weeks. He was on vacation for two weeks during which time we saw no tics. He is still on medication, but we have been reducing his dose and so far so good. The first time we noticed a tic was yesterday (just one) - it was his first day back at school and he had hot lunch at school. Needless to say, I took him off of hot lunch as of today. So here's my question - With things largely under control our doctors have a difference of opinion regarding his recent test results. He tested low reactivity to wheat and wheat gluten on his recent Igg. One doctor says reduce his wheat intake as much as possible. The other says - things are going well, ignore the Igg results, take things one step at a time. Any thoughts??

Faith, I tried to PM you with the information on where to go for those articles I read on MB12. I got an error message that your mail box is full. They are on a doctor's website and I was hesitant to write the doctor's name on the main board. Debbie

Faith, It sounds like you have more knowledge on the MB12 than me. I read about it in passing while I was looking for the right doctor to chose. I believe where I saw it was on one doctor's website as link to an article. We were considering this doctor but decided on someone else. When I called the office to inquire about the doctor, his staff member told me that they routinely start their patients on MB12 even before blood results come in to help the body detox. Now I do not know whether this staff member was giving me correct information and like I said, we went with someone else. I can PM you with his name early next week (I have to look it up, but right now have to go prepare for company that is coming over the weekend.) Let me know if you are interested. My son is doing well right now - I can give you more details next week on that too. Debbie

Hi Faith, Thanks for your input. His B12 was very high at 1139 with a normal range listed as 211-911. I have heard of MB12 in some of my research, but did not realize it is used to normalize high levels of B12. I thought I read it helps to release toxins for those with high mercury levels. Can you (or anyone else) tell me what B12 does in the body and how high levels of B12 may affect kids? Do you see improvement with the shots? Debbie

Thanks Tami. We used Great Plains for the IGG and urine, Genova for stool testing and LabCorp for other routine blood work. I think the 3-oxoglutaric was on a Great Plains report (I don't have it in front of me - I could be mistaken). My son is not currenty taking any supplements other than his regular mutivitamin but does sometimes drink vitamin water (I think I read that sports drinks can elevate the B12 number).

Hi everyone, Its been a while since I posted. First an update - we have not seen any tics in the last few weeks! My son has been doing so well on the elimination of artificial colors, flavors, preservatives, etc. that we just started reducing his medication (under supervision of his doctor, of course). We just received test results for his IGG and other testing in advance of a follow up appointment with our doc next week. Can anyone help us understand some of the results? First - IGG: No foods in the high or medium sensitivity category. Low sensitivity to: Wheat Gluten Wheat Gliandin? Garlic Sorgum? Kidney Bean Egg Yolk Egg White Sensitivities ranged from 3.02 (Wheat Gluten) to 1.46 (Egg White) Do foods in this low sensitivity category affect tics/OCD or can they remain in the diet? Other tests with abnormaly high results: 3-oxoglutaric 3-indolcacctic BUN/Creatinine Vitamin B12 Abnormally low results: Lactobacillius Bifidobacteria Vitamin D Can anyone help us make sense of any of this? Thanks in advance! Debbie

I just wanted to say thank you to everyone here. We took my son off of all artificial ingredients, preservatives, high fructose corn syrup, etc. and have seen significant improvement in his tics. We went to see a nurse practioner on the DAN list and had IGG, urine, stool and other blood testing done. Still awaiting the results. His OCD is going strong, but we are greatful for the small miracles. I would not have known where to begin without this website. Thank you!!

I have read several posts lately mentioning Epsom Salt Baths. Could someone explain to me what they are used for? I am relatively new to this forum and must have missed earlier posts on the benefits. Thanks! Debbie

Tami and Chemar - Thanks for your advice. I have not yet been able to find a DO in my area that works with tics, although I will keep looking. In the meantime, I just made an appointment with the holistic nurse practitioner.

Michele, My daughter is on Klonopin for tics (she does not have any accompanying disorders). She tried others first, but they either didn't seem to work or the effect wore off within a short time. Side effects are usually drowsiness, although my daughter does not experience this even with increases in dose. My son is on Klonopin as well. He also does not experience the sleepiness, but it has not worked as well to control the OCD so the doctor started Zoloft recently. He is coming down on the Klonopin dose at the same time. Zoloft (anti-depressant used to treat OCD) seems to have had some positive effect. Side effects are sometimes insomnia and weight gain. My son has not experinced either, but as I said in a previous post, did complain of headaches, blurred vision and dizziness. These seem to have subsided. We are hesitant to increase the dose now to get improved effectiveness because it will mask symptoms we are now going to try to address through a more holistic approach. Michele, let me say that I might not have taken the medicine route if I had known there was another way to treat tics. We would really like to try to reduce/eliminate the medication if we can find a trigger and eliminate it. Gla to hear your son's tics and OCD have subsided eventhough you are struggling with ADHD. Is the GFCF diet working for him?

Faith, Thanks for the reply. My daughter is almost 11 and is doing great. She has been virtually tic free on her medication. She still has a mild arm jerk but only at bedtime. Just recently an eye twitch resurfaced. This sometimes happens when she outgrows her dose, but rather than increasing her, we wanted to explore the allergy/diet connection. As of yesterday, I convinced her to try a week without MSG, preservatives, food coloring, etc. Of course it is too early to tell. She was allergic to eggs when she was younger (pre-tics) and had terrible eczema until we eliminated them. We thought she outgrew this, but maybe not? Part of the problem in identifying her allergies is that my children fall into the small percentage of kids that never test positive to skin or RAST testing. My son is 6 and is not doing as well. He has both tics and OCD while on his medication, though not to the same degree as before. It is possible we have not yet found the optimal combination or dose. He experienced side effects from the medicine - he complained of frequent headaches, blurred vision, dizziness. We are not sure to what degree he was actually experienceing these symptoms - he is a child who has a history of always complaining about something, but with a new medication, we have to take it seriously. The neurologist is comfortable at this point with an increase as his complaining seems to have subsided, but we would like to hold off while we explore alternatives. We eliminated artificial ingredients at the same time we last increased his dose. His focus and concentration have definately improved, but it is hard to tell which helped. I also live in the NY area. If there is anyone you can recommend that has been helpful to you, I would greatly appreciate it (perhaps through a PM if you are more comfortable). Tami and Chemar - thank you for your input. I hope to respond to you shortly. Right now I have to go pick up the kids. Debbie

Hello everyone, I have posted only once on this forum before, but have been reading the boards almost daily since I found this forum a few weeks ago. Although I have been dealing with my children's tics for a few years and googled "tic disorders" and "OCD" many times, I only found this site recently after googling "tics and diet". Thank you to all of those people who spend so much time offering support and guidance. It has truly been a source of hope. Here is a bit of my history: I have two children with tics. The first was diagnosed three years ago first by my pediatrician and then by an excellent neurologist who sees many children with tics. She was put on medication to manage her condition since it was clearly interfering with her ability to concentrate in school. She responded well to the medication and had no visible side effects. We had no idea that there were other options - we certainly would have pursued them. We are not in favor of unneccesarily medicating our child. I have another child that was diagnosed with tics and OCD about one year ago, although we saw signs earlier. He was also put on medication but has recently complained of many side effects including headaches, blurred vision, sleepiness. We did not want to increase his dosage for fear that his side effects would worsen. It was heart breaking to see him complain daily about not feeling well and hear his teachers say that he is having difficulty concentrating at school. That is when I began my search that put me here. Since reading Sheila's book and finding this forum, I have taken my son off of preservatives, artificial flavors, colors, and MSG and looked for a DAN doctor. At a recent appointment with my neurologist I asked him about dietary changes. He suggested reducing sugar intake to help with the OCD. He also gave me the name of a nurse practictioner in a holistic medicine practice(who happens to be on the DAN list) who one of his patients highly recommends. When I contacted the nurse, she said she sees several patients with tics/OCD and when she can identify a nutritional deficiency, food sensitivity, etc., the response is remarkable. I do not think she gets into metal detox (although I am not 100% sure). Because I am still partial to MDs (and in search of someone who might actually take insurance!), I next contacted an environmental medicine doctor who seems to be pretty well known in the DAN community. I was quite taken aback by the conversation with his office - He sees just a handful of children with tic disorders (his specialty is autism) and he usually begins with MB12 treatment even before extensive testing is complete. He sends patients home with a kit to bring to a lab to have food sensitivity tested and then results are sent to his office for analysis. Regarding detoxification, he said that if toxic substances have been in the body for a long time or in high doses, then brain damage may be permanent even after treatment. BRAIN DAMAGE??? This is where I was taken aback! I my now several years of dealing with tics no one has ever said my child may be brain damaged! My neurologiost actually expects my children to grow out of this condition in their teens! I am now unsure which road to take. Thank you to all who took the time to read this long post and who all who take the time to repond with guidance. As you all know, this is an incredibly challenging time for us. Debbie

annag- Are there any other doctors (does not have to be traditional medical) in the area that you have found helpful? How is your child doing now?

I am new to this site. I just read Sheila Rogers' book on Tics and Tourettes. I have a child with tics and OCD and am interested in finding an allergist who might be able to help us. Has anyone seen Dr. Wojcik in Bronxville, NY?