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