If you’re like most people, you read an article but may not go back to check out the comments that later come in from others. We don’t want you to miss out on some of the important advice and information we’ve received from readers about our series Why the Tourette Syndrome Association Should Be Investigated.
For your convenience we have compiled several of the comments below. We will continue to share other comments with premium subscribers each week.
Our latest post in this series has links to the previous articles See here.
1 Thank you for your passionate commitment to supporting suffering families through all the valuable information you share. I could not agree with your Part I article more. We have been on this journey with our son for 6+ years now, and I am convinced that environmental factors are a key player in frequency and severity of tic symptoms.
I am so very disappointed in the TSA’s narrow approach to tic treatment/prevention and to what appears to be an unwillingness to explore the positive effects of alternative as well as traditional approaches. I don’t want to discount the many good things that the TSA does, but the TS community would be better served by a broader approach. Sheila, set up your non-profit to fund alternative studies, and I will be the first to contribute!
2 VERY interesting indeed. Having *just* returned from the TSA conference last week, I was disappointed to attend a panel discussion on Nutrition, Exercise and Coping only to come away with nothing more than anecdotal advice. None of the panelists had tried a gluten-free/casein-free diet, and one joked that he was going to try a diet of one food a week to see how that went.
As someone who is working diligently to help my son with TS, I am interested to learn more about what ACN has to say and offer.
3 I absolutely agree that the connection between Tourette Syndrome and allergies should be studied using rigorous scientific methodology – actually, this should have been done years ago!
My now 20-year-old son suffered from moderate Tourette Syndrome with symptoms starting at the age of four. Around the age of ten, my son went through comprehensive allergy testing and was found to be allergic to grass, weeds, trees, etc. Years of weekly or semi-weekly allergy shots at the hospital allergy clinic followed. The traditional allergy symptoms started to improve within a year of treatment and over time the TS symptoms slowly improved as well. Right after each allergy shot, however, tics would skyrocket – no use to even think about getting homework done. My son’s TS symptoms are now mild.
Obviously, we don’t know if the allergy shots were the reason for my son’s improvement – my son’s experience is a case study, at best. His nervous system or his immune system might have improved independently over the same period of time or some habit or environmental condition might have changed.
The most frustrating aspect is that if allergy shots indeed help allergic Tourette syndrome sufferers alleviate their Tourettes symptoms, so many more children and adults could be helped. It seems to me that designing robust experiments to determine if allergy shots are an effective treatment for Tourettes would be fairly straight forward. In addition, allergy shots dispensed in a clinical setting are very safe.
(Editor: We replied to this writer that conventional allergy shots as described here have not been associated with a prompt decrease in symptoms as much as some other approaches.)
4 I’m an adult with now mild Tourette Syndrome who once had severe TS as a child. Around the age of 12 I discovered Latitudes for the first time. At that time some wonderful and very special person bought me a subscription to the Latitudes newsletter along with the back issues of Latitudes and had it sent my way. This changed my life forever as my dad and I first started trying to treat my TS naturally. I had been on many different medications that either didn’t work or had too many side effects since the age of 5. I had been in and out of a few Children Hospitals along with Yale Hospital. The help of Latitudes brought us many answers in treating my TS. Since then I’ve treated my Tourette’s with supplements, neutralization allergy treatment, massage therapy, acupuncture, diet, detox, etc. At the age of 18, I was able to gradually stop all of the medication that I had been taking for my Tourette’s.
I totally agree it needs to be investigated as to why the TSA has not pursued studies on alternative therapies and TS. Over the past 20 years, so many people have found alternative therapies to be so helpful for their TS or their child’s TS, and it’s time for studies to be done on this!
We lived in a very rural community, and my family was able to go to a TS support group one time when I was first diagnosed. It would have been nice to hear about alternative therapies from the TSA support group when I was five years old and just diagnosed rather than after seven years of dealing with severe Tourette Syndrome. We need studies to be done, so that all doctors are knowledgeable about alternative therapies to treat TS, TSA support groups should be able to share info/discuss alternative therapies for TS, and parents/families/individuals can get the help they need without having to turn to strong meds that frequently don’t help and/or have serious side effects.
5 Thank you for tackling a very controversial issue head on Sheila. We were pretty much treated as “quacks” when we attended local TSA meetings and dared to try to discuss diet, environment and any other aspect of treatment for tics/OCD that did not fall into the standard TSA rhetoric.My son even spoke at a regional meeting about just how much better things were for him since he went off meds and followed the things we learned about in the Latitudes magazine and here at ACN…this was about a year into his “natural” treatments so we had clear proof of how much it was helping. No one ever followed up and it remained the same old stuff in their newsletters and research.
In some cases, like my son’s, their recommendations on medications, and referrals to physicians, psychiatrists and psychologists that tow their line, can be downright dangerous!!
I really hope your articles will draw lots of attention to this very vital issue, and that many will contact the TSA about it, in hope of a broadening of their views. After all….who knows how many children may actually be greatly helped by treatments that are a lot less risky than those the TSA promote. Just the testimonials by the many parents who have found ways to help their kids via ACN/latitudes should be enough incentive for them!
More to come!