We don’t want you to miss out on some of the important feedback we’ve received from readers about our series Why the Tourette Syndrome Association Should Be Investigated.
We will continue to share comments from the series with premium subscribers each week; we know most people don’t go back to read them as they are added.
Our latest post in this series has links to the previous articles at the bottom of the page.
1 Cleopatra Says: My daughter has a PANDAS diagnosis (diagnosed both by Drs. Tanya Murphy and Sue Swedo). After a year and a half of high dose IVIG, antibiotics, the medication Namenda, and more, my daughter was just about completely back to herself after strep throat had resulted in a sudden onset of acute neuropsych symptoms (too numerous and horrifying to list), including tics. Recently, though, my daughter very suddenly developed a SEVERE complex motor and vocal tic that left her debilitated and housebound again for the past 2.5 months. I knew it was an autoimmune response. We tried every possible treatment from the physicians we saw (including IVIG, antibiotics by oral and IV route, steroids by oral and IV route, the drug Cellept, anti-virals, anti-inflammatories, etc.) Then I went to a neurologist to see if a standard medication like Clonidine would possibly help her function.
It was amazing to me that this top pediatric neurologist insisted there was no known cause or good treatment for tics. He gave her a Tourette’s diagnosis. He also kept telling me to increase her Clonidine dose, when it was clearly not working. I finally got my pediatrician to swab her nose (looking for strep) and instead she had Methicillin-resistant Staphylococcus aureus (MRSA) revealed by the culture. MRSA is resistant to almost all antibiotics. After one week on Bactrim my daughter has suddenly stopped ticcing completely. I saw a decrease after 3 days, but, it took a week for the medication to work more fully. I have no idea how these neurologists can look a person in the eye and say with complete certainty that it cannot be caused by an infectious or viral trigger, or, by allergies, etc. It is frightening and sickening at the same time. I have no idea why my daughter wasn’t just given a nasal swab to start with. It is such a simple thing to do some blood work or a swab to look for various triggers for tics.
There is no reason in the world why my 9 year old daughter needed to be subjected to all these medications, treatments, needles and potential side effects (blood pressure medication, steroids, really???). I applaud you and thank you for your work. It’s time to open the minds of these doctors and make them accountable for their actions.
~ A PANDAS mom
2 CA Says: When I was a child, my mother took me to see a doctor to assess my facial tics. We were told by the doctor that the tics could not be cured, but that medication might help to minimize the tics. My mother reviewed the harsh side effects of the medications and decided against them. Instead, she explored environmental factors and diet modification, since others with tics had reportedly been helped by addressing those areas.
As a result, I ended up receiving a series of allergy treatments. In addition we made a point to avoid artificial colors/flavors, fragrances, and other toxins. These simple changes made a huge difference with my tics! I will be forever grateful to my mother for deciding against medication that day in the doctor’s office. It would be really great if the TSA would consider exploring some of these alternative treatments in future studies. I think they might be surprised at the results!
3 Penelope Bridges Says: I have had similar experiences to the parents discussed in this article and to those who commented in Part 1 of this series. On the one hand, it is a miracle that each of these parents and I managed to find the cause of the TS symptoms in our children, either with the help of Sheila Rogers or with practitioners, i.e. nutritionists, allergists, osteopaths, and homeopaths. On the other hand, it is gross negligence and should be criminal that the mainstay organisations of our countries, the US, the UK etc, do not look into these relatively simple and non-harmful approaches to curing a condition which conventional, mainstay medical establishments say is generally ‘incurable’ and whose only solution is to offer drugs whose side effects can be as damaging to a child’s physical and mental well-being as the condition itself.
For any doctors or the TSA or similar organisation reading about this, perhaps a little skeptically, I am writing as a mother and an expert in my own child who has had TS (based on 24x7x365 observations) for years. Please think about all the children whose lives you can positively impact by being open-minded and connecting with Sheila Rogers or others such as environmental practitioners. This is real and it works. It is based on sound principles, fairly obvious ones in hindsight. To ignore these efforts would be to be responsible for the unnecessary suffering of so many children and their families. Please connect with those who have had the experience of success in treating this debilitating condition. Give them the credit they are due.
4 3bmom Says: Thank you Sheila for your courage and voice for the frustration felt by many parents.
I am a parent of a child with PANDAS/PANS which I see as a Venn Diagram with Tourettes and Autism since many symptoms are shared along with environment, diet and infections as triggers. The Autism medical community also ignore parents success stories and continues it’s claims of Autism as a “genetic disorder” which is now at epidemic proportions. Like Dr. Mandell, they ignore Dr. Michael Goldberg’s evidence based science showing blood work of Autistic children having high titers for chronic infections along with severe allergies or Dr. Amy Yasko’s supplement support based on your epigenetics. I also don’t think it is a coincidence that Dr. Mandell’s first Tourettes patient was in the late 70′s. That is when Glyphosate pesticide was first introduced into our food supply. We have since had an explosion of neurological issues starting in the late 90′s, including PANDAS and Alzheimer’s, since Genetically Modified (GMO) food now allows spraying of Glyphosate pesticide directly on the plant we are eating as opposed to the soil in the 70′s. Neurologists, Immunologists, Infectious Disease, Gastroenterologist and Pediatricians along with all of us parents need to unite and let it be known we want answers and information that leads to healing and prevention not more drugs.
We want research based on what is working and to stop touting that numbers are increasing because we “missed a few” in calculations. Seriously, 1 in 10,000, to 1 in 50. Who is doing the Math?
5 stevepoly Says: It appears the TSA has closed the door and conclude they already have all the bases covered. Just as so many drugs merely mask symptoms and do not go to cure the condition, they continue to mask the fact that they evidently have zero interest or consideration toward alternative approaches that can possibly allow those suffering to find relief. That being the case, how can they hold themselves up as having any sort of authority and consider themselves sincerely performing research concerning TS when they lock so many out?
Those on such a large ego trip are usually really masking their own insecurities. Even solely from the level of compassion, one would think they would be willing to at least investigate any new data coming in from other doctors and patients with an open mind. But just like any stick in the mud, it eventual withers and dries up if it does not move with the flow of new energy. They should be investigated and maybe a bit of introspection will reveal why they are so closed minded.