How I Healed My Son's Tourettes Syndrome

Getting up the courage to write this blog (which will come in parts) was no easy task. I have been writing sporadically about "green" eating and living but the journey I just went through makes every single previous blog post pale in comparison. Let me start from the beginning. My son Cole has always been a terrible eater. You may have read some old posts about how I struggled with him as a baby and as a toddler and child his eating habits never improved. Sadly, I must admit that I gave in to his desires just to make sure he was getting enough calories. I was constantly worried that he would lose weight or even shrink! (I know that is not a rational thought but I still had it nonetheless). So his diet eventually morphed into one high in carbs sugar and dairy. I still kept it "organic" as much as I could. We stayed away from HFCS, dyes and fast food but it wasn't enough to keep him healthy. 

Around 3 years of age, Cole started making some little grunting noises when he ate. I noticed them right away and promptly asked his pediatrician what they were about. She reassured me that they were nothing and probably just anxiety related and would eventually go away. Eventually, they did but only to return months later as a different sounding grunt. They weren't very frequent so I chalked up to anxiety like the doctor mentioned and assumed they would just go away on their own.

Before he turned 5, Cole developed a "movement" that really had me concerned. It was a head jerk. He would nod his head down sharply and touch his chin to his chest. Again, it was infrequent but it was enough for me to ask the pediatrician about what I should do. Again she assured me it was a transient thing and that it would surely go away. Well, it did. Only to be replaced by knocking knees a couple of months later. Cole would be walking, stop and then knock his knees together 2x and then keep walking. It was actually kind of cute to see but I knew deep down that something was wrong.

I didn't really clue in until the spring after he was 5. It was March and Cole started making a weird noise that involved rolling his tongue. If I could write the noise down it would look like this "brrrreeeeeet". He started making this noise frequently and then almost non-stop. It was then that a friend posted on Facebook about Tourette's Syndrome (her son has it) that I finally looked it up and read the definition. Yep, that is exactly what Cole had and I was devastated.

Tourette's Syndrome is a clinical diagnosis as there is no test that can be done to confirm it. You just go to a neurologist, tell him the symptoms, he will observe and then you get the diagnosis. In order for Tourette's to be diagnosed, the child must have continuous motor ticks and at least one vocal tic present for over a year. Cole fit this description and as soon as I realized it all hell broke loose.

Its like he knew that I knew and suddenly he had 4 motor tics and 3 vocal tics going on at once and their intensity increased as well. His noises were louder, his movements were more jerky, more fierce and it actually looked like he was going to hurt himself. One of his tics was self gagging. He would stick his fingers in his mouth until he gagged. He was punching himself in the head, jerking his head forward and back, knocking knees, doing back bends, flapping his arms, repeating the TV, me and himself and finally SCREAMING on the top of his lungs.

I remember (and will never forget) Mother's Day of 2013. For the entire day, Cole screamed on the top of his lungs 60 times a minute. That is once every second - I counted. I could not interact with him, he was mostly non functional because all he could do was scream. I spiralled into a deep despair because I had no idea what was going to happen to my son.

Everything I read told me that there is no cure. TS was genetic (even though we have none of it in our family) and all the available medications work at best by reducing the tics by 30% with horrid side effects. Some of the antipsychotics reduce the tics more effectively but can leave the child with a permanent movement disorder. This was not something I would ever consider. The most common progression of this syndrome is that the tics would likely get worse as he passed through adolescence with a 60% chance of them subsiding by adulthood. Even then, the co-morbid diagnoses of ADHD and OCD (which are extremely common in kids with TS) may be even harder to deal with than the tics and they would never subside even as he got older. My son was 5 and a half and that was WAY TOO FAR in the future for me to even think about. He was supposed to be starting Kindergarten this coming August and with the way things were, I really didn't think that was going to be possible. I felt like I had no  options and how could God deal me such a horrible hand of cards. 

So I did what I was supposed to do and took Cole to a neurologist and a psychiatrist and since I have a very solid background in science and biology as well as a voracious appetite for research, nothing they told me surprised me. Cole had Tourette's Syndrome, ADHD, OCD and anxiety. His behavior during those appointments was horrific. He was screaming and not focusing and being a totally different child then the one I had known for the past 5 years.  I could understand it and accept it more if Cole was born this way but for the majority of his life, he was a "normal" child (I hate the word normal by the way but for lack of a better word...) and now he had done a complete 180 within a matter of weeks and was this non-functioning child that could not stop making loud noises or forceful movements. At least now I had some answers but really what did that change?

The only thing those diagnoses did for me was to send me into a deeper depression. I was waking up at 2am every night with full blown panic attacks. I mean I would be on the kitchen floor, heart beating through my chest knowing for sure that I was going to die right there in my house. Thankfully, I did not but if any of you have ever had a true panic attack, it feels like the real deal. NOT FUN, I tell you, not fun at all.

The opinion of both these western medicine doctors was to put my 5 year old son on Clonidine. Its a blood pressure medication that has an off label use of reducing tics. Its their first level go-to medication along with another called Tenex but both of the specialists I saw agreed that Clonidine would be the best start for him. I did not agree. 

I knew there had to be an answer, something deeper so I drew upon my holistic beliefs and went in search of the solution. It had to be out there and nothing was going to stop me until I found it......