Sheila

Thank you, Christie. This is going to be a controvery for sometime. (I had to delete the actual article because of the copyright, leaving just the link.) Here's another interesting article about an interview with Dr. Andrew Wakefield and another researcher that was circulated today: http://news.independent.co.uk/uk/health/st...sp?story=459621 Autism is not assumed to be totally due to mercury and/or the MMR--they are just apparently key players for a subgroup of kids, according to Wakefield. It sounds like we should know more next spring (per the article). Sheila

Thank you, Claire, for posting that link. From what we have heard, the antiobiotics are most effective with new cases, with older cases more often requiring the more intense treatments mentioned by Vojdani. Am sure there are exceptions. But if Forum users have additional input on this, please let us know. Sheila

Sloan--Here's a good overview of the issue -- you need powerpoint to view it: http://www.autismone.org/proceedings/Brain...ild%2043003.ppt It's complex in places. Dr. Lang contends there is an issue of sulfation across different approaches that have been useful for autism. Some of those approaches are also useful for TS, so there may be something valuable to learn there. Sheila

Karen--I'm glad Gavin is doing better! Did you just recently start the allergy shots? What type of shots are they, if you don't mind my asking. Sheila

Dear Karen, I'm just dropping a note to see if your doctor had ruled out PANDAS? Best wishes, Sheila

Dear Jorge, There has been a minimal amount of research done on heat sensitivity and tics, and there is a new theory being floated that an imbalance with the hypothalamus could be affecting some people with Tourette syndrome. It's a new area of research, but I would consider it worth exploring. Good luck. Sheila

Laura--we have arranged for a reading specialist to be our next forum guest. You should have an answer fairly soon! It's best to sign up for our e-newsletter (free) so you will receive an announcement about it. Good luck. Sheila

Thank you, Chemar--that's a very helpful link to give people an overview of the issues. These are major drugs that have not been tested for children and that even adults have trouble tolerating. And the fact that they can cause serious, permanent damage--and they often do--is more than sobering. It's really unbelievable that the same doctors who prescribe these types of drugs right off the bat often warn parents not to try a special diet or nutrient supplements. Sheila

Mustang Carole--It's pretty frustrating to have to educate the doctors, on top of all the other duties a parent has when involved with these conditions. It's amazing how many times we hear from people whose pediatricians don't know about PANDAS--and I think neurologists are very tentative since it is relatively so new. I also think the neurologists are not too keen on having to share these disorders with immunologists! If you have found someone who is open and wants to see lab results, that's at least something. Keep us posted--and good luck. Sheila

Merrie--there are many with TS who find a connection with intestinal/digestive difficulties. You might want to look into an intestinal permeability assessment. http://www.gsdl.com/assessments/ip/ and follow-up with a doctor familiar with this. I am sending you an email with more information Best wishes, Sheila

Betty, from what we have been able to learn about treating tics and other TS symtpoms without drugs, a multidisciplinary approach seems to work best. This means doing a few things at the same time--like changing the diet, adding nutritional supplements, making some changes to the home environment if there are allergies or chemical sensitivities (which there often are, even if no one had thought to consider this before)--and removing any heavy metals from the body if they exist. If someone's TS symptoms are linked to exposed to heavy metals such as mercury, lead, or cadmium--which are toxic to the brain--then it is important to remove them from the body or the other approaches, while potentially helpful, will be less successful. Taking a good look at heavy metals usually entails lab work by someone experienced in this area and who can treat by detoxifying the body. Other toxins affecting the brain are pesticides, typical cleaners and fragrances, and some chemicals added do foods. More and more environmental reports are coming out that show the negative effect of toxins on our kids. They are sometimes detected in the blood of the child from birth--and also increase with numerous exposures while they are growing up. If you are looking for a place to start, I would sincerely suggest you think about getting our back issues of our publication Latitudes. They are not out of date as far as being relevant to parents, and each issue has articles and other informtion on treating Tourette syndrome without drugs. We offer them very reasonably--you will receive 5 years worth for $35--while a one year subscription is $45. That would be my advice, were I in your shoes. I know it can seem overwhelming in the beginning, but there is a good chance you can find approaches that will help your son need less medication, possibly none. There are no promises, but I agree that the side effects he is experiencing are of concern, and you may decide it is worth the effort to find out if something else can help, starting with diet, nutrition, and the home environment. Please keep in touch. Best wishes, Sheila

Mike--That's such a difficult spot to be in. You can do a google search for the drug name and "warnings" or "side effects" and come up with many references that list problems. You can also go to the manufacturer's site and print out the entire package insert. Of course that's also available at the pharmacy but is so tiny that it's almost impossible to read. I believe you will be better served by using standardized statements than by collecting parental observations. The manufacturer should also provide research, which gives some idea of the percentage the drug helped--and you will also find the age group it is tested for on the insert--often not for children. Betty's comment gives a positive view of using a low dose medication--though clearly with significant side effects. Just curious--have you ever had Matthew tested for heavy metals? Best wishes, Sheila

Jennifer, would you please contact me by e-mail? I would like to talk to you--Thanks, Sheila sheila@latitudes.org

I sent you an email, Katie--Sheila

Rebecca, I recently spoke with a leading homeopath who said she has often treated TS. She said that the results run the spectrum, from amazing quick resolution, to needing ongoing treatment for years. One thing all the homeopaths suggest is that you need to see a training professional for chronic problems, whereas you can more successfully treat acute issues yourself from products at the health food store. It's interesting that we did a survey once that implied many people had found homeopathy helpful for tics, but we rarely get individual reports on it. For the mineral blood test, some doctors we work with recommend www.doctorsdata.com; (800.323.2784) in Chicago area but there are other locations as well, and experts have different favorites. (You don't have to live near the lab, of course.) If you want the names of homeopaths who would possibly do phone evaluations and treatment, you can email me:sheila@latitudes.org Best wishes, Sheila

Hi, Socorro. It depends where you live. Some school districts have a parent support department and will assign someone, sometimes a staff member and sometimes a volunteer, to sit in on your IEP meeting and offer suggestions and support. It always makes the team sit up and pay attention! Otherwise, if it is a serious problem, it can be worth it to locate an advocate and pay for the service. I would ask for recommendations at parent support groups. (Teachers may not be inclined to give any names out!) I hope it works out nicely for you. Sheila

Carley, there seems to be a significanti subset of people with sensory hypersensitivities--touch, light, heat, smell. . . recent research put the number with heat sensitivity at around 30 percent. Many report light sensitivity, as did Chemar. Some people have found help with Irlen lenses (there's an article on our web site on it under Learning Disabilities), though we only have a few reports so far on it helping tics. People can use colored lenses in glasses or colored pastic overlays on reading material once they find the color that feels best for their eyes. See www.Irlen.com Natural or full spectrum lighting is best. It's interesting that flashing lights seem to bother some more than bright lights. Flashing lights can also trigger migraine and seizures. I think the main thing is to listen to children when they complain about the tags in clothes or a new shirt feeling scratchy, or the room being too hot--and respond, instead of brushing it aside or thinking they are just being fussy. Good luck, Sheila

Thanks, Jennifer. Good to hear a personal testimonial on this! I notice it's available by mail order from many sites, so people could ask their natural food store to special order it, if they presently don't carry it. Sheila

Thanks for adding that, Chemar! Sure glad they moved the class. Most schools seem to be getting away from carpet because of problems with cleaning and mold growth, etc. In 40 years from now people will probably look back with amazement that we used such toxic products in carpeting/glues. But in the meantime it's so hard to protect ourselves. Sheila

Dear MC--where do you live? Let's try to find a practitioner who can help you. It's true that dental work can trigger tics. In fact, aside from the serious mercury issue, we have had reports of people finding that even dental spacers or braces set off tics that went away when they were removed. I hope you will get back to me. Sheila

Bonnie--please send me a summary of the exact announcement you would like to circulate and I will put it in our next ACN Today newsletter--probably next week. (Latitudes is going out in the mail today, but can put it in the next issue of that also if you still need participants at the time. I think it's great this is happening! Sheila please send to Sheila@Latitudes.org

Thanks for the feedback, Trudes. Sorry to have overlooked your letter! I'll pass this on to Miss Mona who made it! Sheila

Susie--you can read about Dr. Robbins on the Forum where the guest are featured. He answered questions for a while. He is an environmental physician, like Doris Rapp who wrote Is This Your Child? and Is this Your Child's World? You might want to read some of the discussion and then get back on the forum. This is a different approach to allergy than the typical approach. It helps some people's OCD and TS. Best wishes, Sheila

So sorry to hear that. I hope you have been able to bring the symptoms somewhat under control? I will put your question in Latitudes and see if anyone replies. Best wishes, Sheila

Will do! Sheila