BY PARKER’S MOTHER
Editor: This parent is sharing her ongoing experience as the family seeks answers to her son’s Tourette syndrome. She is encouraged by their findings so far and Parker’s response to date. As of this writing, Parker’s mom tells us she just received additional advice from a second physician and she will be update us on the new information and his symptom response next month.
Sheila, your website has been so helpful—it’s the only place in this journey where I’ve found real answers. My son and I want to help others, so we are sharing our account with your readers by discussing his distressing tic disorder and what we have been learning. We’ve included some of our findings below, and meanwhile we continue to look for more answers.
Also, I’m reading your book Natural Treatments for Tics and Tourette’s: A Patient and Family Guide. In it you request information on people who’ve been tested for gluten sensitivity in relation to tics, so I am addressing that as well.
Parker’s torturous tics
Parker is now 15 and has had Tourette’s since he was 8 or 9. His symptoms were incredibly mild, almost not even noticeable at times. We thought he’d outgrow it, and it wasn’t affecting him much at all. We were not overly concerned until he began a significant growth spurt at age 14½. At that point symptoms exploded into a debilitating condition that has rendered him nearly incapacitated.
Many people would ask or assume that Parker’s onset coincided with a strep infection or perhaps Lyme exposure. Parker is an incredibly hardy kid. He has been sick a total of three times in his life. He has never had strep or Lyme. He has never need to be on a single antibiotic. When Parker’s tics exploded in May 2015, he suddenly outgrew all his clothes and began eating everything in the house. He was 5′ 4″ in May and a size 6 shoe. By August he was 5′ 10″ and a size 10 1/2 shoe!! Doctors we have seen corroborated that the likely cause for the tic explosion was the fast increase in testosterone and growth hormones hitting his system.
We consulted with an osteopathic physician, Dustin Sulak, of Integr8 Health in Maine, and worked with some of his staff. Initially cannabis treatment was very helpful, but within two months of using it Parker developed an allergy to it. We had to give that up in December 2015 and this cut us off from the only natural treatment that was really working.
That threw us into exploring the role of diet and the environment. We recently learned through a food allergy blood test and other input that Parker is not in fact gluten sensitive nor dairy sensitive in the ways one might suspect. Instead he has methylation issues that predispose him to a subset of both of these categories. Meridian Valley Labs clarified for us that Parker has a whey protein allergy. (Food Allergy Test Parker )
Genetic testing from 23andme.com was recommended and through it we uncovered many issues—only one of which is that he has a problem with metabolizing folic acid as a result of a MTHFR mutation.
Parker avoids milk due to his high whey sensitivity and also does not eat wheat products. He has a very dramatic reaction to synthetic folate (labelled specifically “Folic Acid”), which is in every form of commercially sold bread and pasta product in US. This additive is mandated by the FDA to prevent spina bifida. We eliminated items with this ingredient and saw marked improvement. Then weeks later, Parker accidentally ingested it in some breaded chicken. He experienced a four-day severe bout of tics; the connection was very obvious. We have learned he is unable to methylate this type of folate but he responds well to the proper form of folate for him.
When eliminating the offenders noted on his blood work (as well as some other items), his tic severity drops significantly. So, what would that mean for us? I periodically, without his knowledge, count and time his tics. When the symptoms are at their worst he can experience complex motor and vocal tics more than 72 times per minute. Just multiply this times the number of minutes in a day, and you see where we are. We have been borderline desperate here.
When we eliminate whey and products with added folic acid, along with other offenders identified like banana, almond, peanut, and quinoa, tics are reduced to 20 times a minute or less, which one could postulate is 75% decrease.
There is also indication of a candida infection, which we are now treating with supernatural silver and probiotics.
Our new focus
From everything I’ve read, it appears that inflammation = disease. It seems with my son that we need to identify any and all things that cause inflammation and use targeted therapy to eliminate them, while also improving his own ability to detox or eliminate them from his body.
We’ve just recently decided to pursue an expert in interpreting Parker’s 23andme DNA results because there are significant factors indicated that are creating inflammation on many levels. It seems that some of these issues, once identified, could be treated with dietary and environmental approaches. Only until we’ve done that will we begin to see what’s left that may need additional help.
We are currently waiting for a new doctor to interpret his DNA data in the next few weeks and give us a big picture plan on the where, when and how of helpful supplements and diet changes. When the methylation cycle is involved, it’s really complicated and progress doesn’t happen all at once; the effort has to be constantly tweaked. That is when I think we’ll really see some improvements.
Why we went the alternative route
I’ve had extremely bad experiences my whole life with conventional medicine. If your body gets a hole in it, wears out, or a part falls off, the doctors can usually fix it. But with things like this, forget it. A condition like this is not a one-size-fits-all. We’ve always been the family that is in the 2% of the population that gets the “reaction” to things. If you looked at our DNA as a clan you could see why. I wasn’t about to start arguing with conventional doctors about pharmaceuticals when there are other avenues that can be pursued first. Parker himself begged us to NOT go the conventional medicine route. He also agreed to try any and all natural approaches first, and that conventional medicine was the last resort. He’s been a real trooper in this regard, and I am very proud of him for it.
We are trying to go natural at home but that costs money we frequently don’t have. Society and its products in the US as a whole seem increasingly toxic. Going natural can mean more expensive. There is still a lot to do, investigate, and unfortunately purchase on a regular basis to make that happen. Parts of our house need to be renovated to make the home cleaner and clear of molds, dust, and allergens. So I look at it as a continuum. When we have extra money or run out of something, that is the opportunity to take the money previously dedicated to a more toxic product and put it toward a less toxic one.
As we continue our search, Parker is desperate to be well. Think about what the typical 15-year-old-boy might be doing: Going to high school, playing sports, perhaps has a girlfriend, is learning to drive, and starting to think about college. My son can do none of these things. It’s a crime. His tic disorder is stealing his life from him. He’s ready to do anything, make any lifestyle change, to be well. We are hopeful that recovery awaits Parker very very soon, because he has had some encouraging responses to even small dietary food and supplement changes so far. Further, we have just implemented some new recommendations from the second doctor that seem to be making a huge difference, and additional suggestions are going to be available to us shortly. So, more to come on this!
I hope the info we’ve provided will be helpful to others. We will keep ACN Latitudes updated on our progress.
Editor’s note: A stock photo has been used for this article.