KJS

Hi Andy, I just checked in with the Forum after a few weeks' absense and was thrilled to read your posts about the new treatment. Congratulations! It's been a couple of weeks since you last posted about it and I'm wondering how things are going. Something you said really resonated with me, as I'm sure it did with others. If NDF-plus is able to make such a big difference then it truly does have the potential to change a lot of lives. Kudos to you for being so persistent. Karen

To those of you who have commented on your kids being sensitive to sensory stimulation of various sorts, I have to tell you about the HANDLE approach I am trying with my daughter. She will be 12 years old this week and when she was much younger she couldn't tolerate lines on socks, turtleneck shirts, buttons, zippers, tight things around her waist, tags. Although most of those things have gone away, the OT who evaluated her still found tactile hypersensitivity. We're being guided by an Occupational Therapist and some of the activities we do are to reduce this tactile hypersensitivity. I believe it is working! There is an activity that involves slowly rolling a ball up and down the arms and back and legs, pausing when it tickles or just doesn't feel good, and stopping altogether after 3 pauses in one session. My daughter went from being able to tolerate arms, hands and back but NOT the back of her legs, to being able to tolerate the full session without even a pause. Information can be found at www.handle.org. Good luck! Karen

I received this as an e-mail today and thought I'd pass it along for those who might not have seen it. I have copied it in its entirety. ~Karen There is growing evidence which has scientists suspecting that a common childhood throat infection increases the risk of neurological disorders such as Tourette's syndrome. These findings are based on a study conducted at the Group Health Center for Health Studies (CHS) in Seattle, is published in the July 5, 2005 edition of the journal Pediatrics, accessible online at http://www.pediatrics.org. The study focused on patients of Dr Davis's co- operative health service diagnosed with a neurological disorder between 1992 and 1999. The study group consisted of 200 children aged four to 13 and compared them with healthy children in the same age group. Based on their medical histories, the results of the study suggests that strep throat (streptococcal infection) doubles the risk for a first diagnosis of Tourette's Disorder (TS/TD), obsessive compulsive behaviors (OCD) or tic disorder within three months after infection. In addition, multiple infections appear to approximately triple the risk for a first diagnosis of these disorders within 12 months. This could be an indication that the same antibodies that attack streptococcal infection may also damage brain cells. Robert L. Davis, MD, MPH, senior researcher at CHS and the study's corresponding: "Strep infections share certain proteins that stimulate a set of antibodies that cross-react with the brain. Many scientists believe the body's response to infection, and to the antibiotics prescribed to fight it, is to produce antibodies that attack not only the infection but may also damage brain cells that control movement and behavior." "Although the presence of these antibodies is more frequent among children with tics or TS, there's much we still don't know, for example, why do millions of children get strep throat every year, but only a tiny fraction develop these disorders? Genetics more than likely play a major role in these conditions, but strep throat might be one of the triggers," "There are likely a number of different causes for these conditions, which often show up first in childhood or adolescence. Following a number of different leads from past research, we've found more tantalizing clues about possible connections between childhood infections and certain disorders. However, our findings certainly don't suggest that there is any immediate need for a change in medical - or parental - practice." "We still don't know if treatment with common antibiotics helps prevent these neurological conditions that might follow strep throat, or reduce their severity, or shorten their duration if they do occur." Strep infections are common, but Davis said it was too early to know whether choosing one treatment option or none at all would help stave off tics. "This is scientific research at this point," Davis said. "One thing we didn't study was whether treatment (with penicillin) modifies these conditions." Davis does not suggest that parents and physicians should be more worried. Nor did he suggest parents do anything differently if their child gets strep throat. "Right now, this is all still in the research stage," said Davis. "We still don't know if treatment with common antibiotics helps prevent these neurologic conditions that might follow strep throat, or reduce their severity, or shorten their duration if they do occur." Other study authors include Loren K. Mell, MD of the Pritsker School of Medicine, University of Chicago, and David Owens, MD, of the University of Washington School of Medicine. Group Health is a consumer-governed, nonprofit health care system that coordinates care and coverage. Based in Seattle, Group Health and Group Health Options, Inc. serve nearly 550,000 members in Washington and Idaho. Group Health's Center for Health Studies conducts research related to prevention, diagnosis, and treatment of major health problems. The team from the Group Health Center for Health Studies in Seattle aimed to assess the strength of the link between strep infections and the incidence of neurological disorders. ---------------------------------------------------------------- Credits ---------------------------------------------------------------- Note, If a link does not work, try cutting and pasting the entire link into a new browser. ---------------------------------------------------------------- http://news.bbc.co.uk/2/hi/health/4647961.stm http://asia.news.yahoo.com/050705/3/23fsd.html http://www.smh.com.au/news/health/tourette-link-to-strep- throat/2005/07/05/1120329448351.html http://www.psycport.com/showArticle.cfm? xmlFile=comtex_2005_07_05_pr_0000-3026-wa-group-health- study.xml&provider=PR%20Newswire ---------------------------------------------------------------- Editor ---------------------------------------------------------------- Paul Marshall editor@tourettes-disorder.com Tourette – Updates http://groups.yahoo.com/group/Tourette-Updates To receive these updates in your personal mail box send a blank e- mail to: Tourette-Updates-subscribe@yahoogroups.com Comments or Questions: editor@tourettes-disorder.com For more information on Tourette Syndrome you may visit my site at: http://www.tourettes-disorder.com we are always adding and updating files. ***Permission is granted for posting this message in other groups and forums when including everything from the credits lines in your post for our service at Tourette – Updates.

Sarah, I forgot to tell you that I also took my daughter to a pedi neurologist and his advice was to go home and ignore her tics. Ignore them! Do nothing! How can we parents bear to watch our children's unintended movements & do nothing? Needless to say I have ignored something - his advice. Although my daughter still has tics they are more mild than they were when I first joined this forum and at least I know that we're trying to help her. Keep asking questions. Everyone's here for you. Karen

Hi Andy, I got chills when I read your post mentioning that you son tested into the gifted program! You must be SO proud! You really are a poster family for what hard work, persistence & faith can do. Continued success to you, Karen Sarah, I'll add my voice to those who are encouraging you to take deep breaths & try not to let the unsupportive doctors knock you off your path. This takes a lot of research and not all of it turns out to be fruitful. But the experiences of the wonderful people who post on this forum can help to streamline the process for you. I wish you strength. Karen

Wow, Kim, it's so exciting to hear about the benefits you're realizing from something - or some combination of things - you've been doing. How encouraging! Do you have a gut feeling about the role of Bonnie's vitamins? I spoke by phone with a local neurologist who was recommended to me as someone who is open to "alternative" approaches to managing neuro issues. He doesn't treat children so wouldn't see us, but he had some interesting suggestions that are consistent with what many people here are doing: supplement with fish oil and magnesium. He also suggested CoQ10. A neurologist with an open mind! I wish you continued success and am very interested to hear how the bedwetting goes with removal of the string cheese. Karen

Cheri, How amazing that there's a connection with the cycles of the moon! And how cool that you actually tracked this on a lunar calendar. You are really something... Karen

Robin, Thanks for the info on L-carnitine dosing. Do you have suggestions for determing which is a good brand? I hope the new head bending & shaking calms down quickly. I've also tried to do my child's tics and it is so distracting. Amazing that they stay as focused as they do. Karen

Hi Brenda, I'm glad you asked your questions about OCD. I, too, fear that I might have overlooked OCD symptoms because my focus has been on the tics. I'm not sure whether or not this would cause me to do anything different, but it's interesting to know. Welcome to this forum and good luck! Karen

Robin, I'm very interested to hear about the details of your experience with L-Carnitine. It sounds like you started your son on 1000 mg per day. Is that correct? How did you break that up, it at all? Were there ANY side effects at all that I should be alert to if I start my daughter on it? Does it matter if you take it with or without food, etc? I read that later in the day didn't work too well because of the increased activity it caused. Any help you can provide will guide me as I think about whether or not to try it for my daughter's eye-rolling tic. I totally understand what you say about not wanting to give your son anything that's not helping him. I felt the same way when we were on the Feingold diet. If it's not helping, stop it and look for something else. They've already got enough going on that we don't have to burden them with things that don't help. Oy, what a process. I hope you find something soon that helps with the head shaking. Karen

Hi Daniel, Thanks for your sweet and encouraging note. Yes, my daughter's tics are relatively mild and we are extremely grateful for that. Although we're now off the Feingold diet I still stay away from purchasing foods with anything artificial in them. I know my daughter will eat things when she's out of the house that aren't the best for her, but at least she'll be eating well at home and the foods I send her for school lunch. I have leads on 2 doctors who may be helpful. One is DAN! certified, along with a PhD nurse practitioner in his office. They seem to have a well-established functional medicine practice and I hope to speak with them over the phone this week. The other lead is a local neurologist who is known for seeking alternative treatments. I will also phone him and see if it makes sense to pay him a visit. Either way, I'm meeting with these people myself before bringing my daughter. I don't want to drag her around needlessly. Good luck with all of this. Karen

I'd like to add my welcome, Nick. Congratulations for taking the big step of posting something on this forum. Now you're 'in' & could very well become hooked, as many of us are, finding it hard to stay away from our computers, eagerly anticipating the next posts that might give us clues to solving our own mysteries. Good luck to you! Karen

This is fascinating, Andy. I hope you're keeping great records and planning to publish an article when you feel you've reached a satisfactory and stable place with your son. I wish you and your whole family continued strength to keep up the amazing work you've been doing. Thanks for taking the time to share. Karen

Daniel, I see why you think this Feingold diet is "lax" as it does not eliminate casein, gluten, corn, soy. Feingold is really about artificial colors & flavors, some preservatives, and some salicylates. It does seem to be most effective for people who have attention issues, which my daughter doesn't. The teriyaki sauce we used didn't have any artificial colors or such in it otherwise it wouldn't have been Feingold approved. Robin, Interesting that you did further food elimination and found some triggers. I've wondered about that, too. You can see from the sample I provided that dairy isn't a huge part of my daughter's diet but she does eat some almost every day. Casein is probably in some of the baked goods she was eating. We have considered eliminating things one at a time but I really don't want to put her through that without having some food sensitivity testing done first. At this age (almost 12), anything that makes her different from the kids in school is difficult emotionally and that stress probably increases the tics. So it's a tricky balance. For reasons that are a mystery to me, her tics have been better over the past few days. Nothing in her diet has changed (meaning, she's eating a regular, no restrictions, varied diet). Maybe school stress has diminished as the year begins to wind down. My husband has been out of town for a little over a week and I'm interested to see what he observes when he returns. Karen

Hi Daniel, Here are some of the days I recorded while my daughter was on the Feingold diet. If you see a pattern here or something interesting I'll be happy to hear about it! Thanks for your interest. You can assume that everything I purchased that was pre-made was a brand from the Feingold list (like cookies,cheese, cereal, etc). B=breakfast, L=lunch, etc. B: Puffins cereal with milk, lemonade, Dole pineapple L: cheese & crackers, watermelon, corn chips, chocolate chip cookies, water S: Sun Chips, avocado, lemonade, peanut butter, water D: home made chicken soup, home made challah (egg bread), artichoke, water B: eggs, lemonade, challah, melon L: tuna, pita bread, shake w/coconut milk, pineapple, papaya, kiwi D: feta cheese on bread, beef burger, white rice, meringue cookies, water B: Eggo whole wheat waffle with vanilla yogurt L: cantaloupe, mozzarella cheese, crackers, chocolate S: bagel w/cream cheese D: salmon wTeriyaki sauce, asparagus, orzo (pasta), meringue cookies, water That's a few days worth of meals & snacks. What are you thinking? Karen

Thanks for the links, Kim. I went to the one on lab tests and, YIKES!, I'm lost. Way too much information from people who are so much further along than I am. Some day I hope to have the time to browse that site for something I can grasp. Karen

Just to let the interested people know what's happening... I have noticed NO increase in my daughter's tic activity since going off the Feingold plan 4 days ago. Although being on the plan didn't seem to reduce her tics, I still wondered whether the clearing out of artificial colors, flavors, salicylates and preservatives might cause us to see anything once we resumed "usual" eating habits. No change for the worse, that's the good news. Still searching for something that will allow me to report a change for the better. Karen

re: May 6, 2005 posting on Dr. Freedenfeld. The correct web address for Stockton Family Practice is www.stocktonfp.com

Yes, Sheila & Chemar - if there's a video or transcript available after the meeting please let us all know how to access it. Break a leg. Karen

Kim, Fascinating Braintalk link on l-carnatine. Now I've got something else to obsess about - whether or not to try it. I never knew that my daughter's very smelly feet could be related to all of this. When she takes off her sneakers at the end of the day and is just in socks I have to ask her to take the socks off because they smell so bad. I need a doctor or naturopath or someone to help me sort this out. I wasn't going to try anything new for a while, focusing instead on the HANDLE activities we recently got from the OT. But I just can't stay away from these forums... Karen

Marie, Thanks for your encouraging and supportive note. You, too, Jeff & Daniel. You're right, Marie - it took years for the tics to emerge so we shouldn't think that the reversal of whatever that wayward process is will occur within mere months. One can always hope! How strange that your son is able to drink OJ at one time of the year but not at another. That really does speak to the interactions between food, environment and who knows what else. I am still in awe of those of you who have been able to pinpoint the triggers given all the confounding factors. When I told my daughter this morning that she CAN have pizza at school today because we've finished our experiment with the Feingold diet her eyes lit up. I assured her that just because Feingold didn't help her tics doesn't mean that nothing will, and we'll continue our search. I described it as trying to unlock the mystery of her tics with a table full of keys in front of us and we don't know which key - or keys - will do it. We might try something related to food in the future, but I suspect we'll do it with a practitioner's guidance and after some testing. Hopefully the summertime will help reduce everyone's stress levels and we'll all see improvements! Hugs to you, Karen

After 5 weeks on the Feingold diet we are fairly certain that the things we've eliminated (Stage One of Feingold) are NOT the things that cause our daughter to tic. We haven't seen a change in her tics and we think she has been extremely compliant. There were a couple of days when she ate things that were probably somewhat off the diet, but most days have been right on target. I also eliminated most corn syrup just because I was reading labels closely and could easily do it. The stress of being different - not trading food at school, not being able to eat at parties (and this is big party season), not eating the special lunches and snacks at school - isn't worth continuing since it doesn't seem to have helped with the tics. I will continue to try very hard to keep additives and preservatives out of the house now that I'm such a skilled shopper because I know that's healthier for all of us. Thank you so much to those of you who offered your support and insights as I struggled through the past 5 weeks, especially Jeff, Andy, Daniel & Gina. We're going to focus our energies now on the HANDLE exercises we received from the occupational therapist and see if those make a difference. I will continue to search for a practitioner to help us figure out our next steps, which are likely to include some testing so our efforts can be more targeted to our daughter's needs. We're giving her the summer off from eating restrictions since she'll be away from us for 2 nights each week and we'll basically have no control over her diet. Hopefully testing will happen over the summer so we're geared up to begin the next big thing in September. Thanks, again. Karen

Hi Daniel, I'm so glad that the information I posted struck a chord with someone else. The website I provided is the best place to get information, even a list of people near you who have been trained in this approach. I don't know where you live, but the person I saw is in NJ. She's a "regular" OT who has extra training in this particular approach and she is VERY happy that she discovered it, believing that it goes beyond where OTs usually tread. It seems that one really needs to be evaluated before a decision can be made about which exercises/activities are appropriate. If anyone reading this post lives within striking distance of Clifton, NJ, the founder of HANDLE is speaking there this Wednesday evening at 7:30. Good luck. Karen

ad_ccl, Wow, that was some amazing note you wrote in reply to my question about persistent tics! I learned so much from what you shared. The part about your husband's chronic cough struck a chord with me because my husband has been clearing his throat - often - for YEARS! I can always tell within a few minutes when he's entered a big room because I will hear his throat-clearing. Not sure I'll be able to convince him to get tested, but it sure is interesting stuff. I did read parts of the Doris Rapp book and remember the thing about the 5 favorites being very likely to contain one or more problem foods. If I had to guess right now I'd say it could be wheat for us because just about every one of my daughter's meals contains some. She eats dairy but not in large amounts and not every day. I must say, though, that for all this great information and all the encouraging success you've had by eliminating certain foods I'm still feeling quite confused. Here's why... Today we paid a visit to an occupational therapist who is trained in the HANDLE approach. You can read about it at www.handle.org. She did a full evaluation on my daughter that was fascinating to watch and lasted for about an hour. During the eval she asked us some questions and we shared a lot of information with her. We went away for about and hour so she (the OT) could process what she'd learned and develop a plan for my daughter. When we returned, the information we received was just mind-blowing. She spoke about the body's various sensory systems and described the status of each system in our daughter. Things she said just sent light bulbs popping in my mind and in my husband's. They explained things we've observed but never understood, like why she sometimes just has to fidget in a chair or twist something in her hands while she's listening to us or to a teacher. The answer is, in part, that she HAS to do these things to help calm down her overly sensitive vestibular system. It's not unlike what many autistic children do to calm themselves, just not as pronounced in our daughter. We learned that our daughter's dominant eye is the one opposite her dominant hand. Though this is true for almost 25% of the population it does mean that the brain has to work a little bit harder almost all the time. We found out that her eyes track well, but not easily - she really has to work at it and this is an added stress to her system. Although the overt signs that she showed as a very young child have disappeared, she is still overly sensitive to tactile stimuli and that adds yet another stress to her system. There were many such revelations and we were just amazed. No wonder she tics - her body's being stressed in so many subtle ways IN ADDITION TO whatever stress she, her parents and her teachers place upon her as part of everyday life! We left the visit with over a dozen activities & props, some that we have to do with her and some that she can do on her own. They are intended to strengthen different aspects of her system, to help with the left brain, right brain integration, to strengthen the eyes so that tracking is easier to do, to calm the vestibular system so she can keep her body more quiet and still be comfortable and focused. Just as the food elimination plans make a lot of sense to me and I know you and many others have seen tremendous positive changes in your children related to diet, this HANDLE approach & the findings from this evaluation also make a lot of sense. So the parents' dilemma is what to do first, or next. It's enough to make anyone's head spin! We are planning to try the activities recommended to us by the OT to see what happens. It doesn't seem that any of them can do any harm. We will continue with the Feingold diet as well, since we've made such a commitment to it over the past 3 weeks or so. If we see a reduction in tics I realize that doing two things at once might make it harder to know which one was more influential. But I'm sure we'll be able to sort it out later. Right now we just want to see some relief. It will help us all stay motivated. Once we've given these things a fair shot I may do a trial of wheat elimination to test my own theory. Many people who post here have found that there are different things that work at different times. We, too, may discover something similar. Complicated, isn't it? Thank you again for your thoughtful replies. You've been SO helpful! Continued good luck, Karen

Wow, Marie! How did you ever learn about such nuances as the properties of celery that you just described? Any advice on how to get started and how to figure out which veggies to use? Karen