By now I hope you have read these posts in chronological order because that is how I am telling the story. With that said, let me take a step back for a minute. Up until this point, I had a sense of dread in the pit of my stomach every waking minute of every day since I clued into the fact that Cole had Tourette's Syndrome. I was constantly on edge, expending so much energy listening for tics and watching my son and worrying about the future that I was exhausted every night by 8pm and then awake in panic attack mode by 2am. It was a horrible existence and I was unhealthy physically but most importantly, mentally. My mind was filled with negative thoughts and a lot of people surrounding me (with the exception of my always supportive husband) did not believe that the holistic approach would yield any results for my son. They thought I was wasting my time and in some instances, putting Cole's life at risk with all the supplements and diet changes I was forcing on him. It was a lonely place to be. I didn't want to leave the house or socialize with friends. I just wanted to sit inside and watch Cole to see how often he ticced. I know this sounds insane and I agree, it was.
That all changed once I connected with Shannon. Shannon is a mother of two boys in SC and her oldest son (a couple of years older than Cole) also has Tourette's! She was posting her story on Latitudes (the forum where people treat neurological disorders holistically) and it seemed like she was a couple of months ahead of me and was having success! She reached out to me and we chatted on the phone for a while. She had been through everything I was currently experiencing, including all the nasty emotional stuff but was seeing the light at the end of the tunnel and had a very positive out look. She was a life preserver in the perfect storm. I latched on to her positivity and it helped me navigate through the treacherous and pitch black waters.
It was the end of July and we were back from our two weeks in NY and Cole's tics were ramping up again. He was in a week of summer camp and I would ask the counselor each day how he was doing and each day she said the tics were getting worse. He was clearing his throat loudly now and flapping his arms forcefully. One day I broke down and just cried on the playground for what seemed like an hour. A couple of the moms of Jake and Cole's camp mates gave me hugs as they could sympathize with me but they really did not get it 100%. I was just a mess and Kindergarten was 2 weeks away.
Shannon and I started texting on a regular basis that week and I told her what was going on. She convinced me that I needed to pull dairy from Cole's diet. On his food sensitivity panel, dairy came up as a mild intolerance and even Dr. Bhatia said I didn't have to pull it. I was holding on to it because Cole loved his grilled cheeses and we just got adjusted to the gluten/corn free bread and I was afraid to change up the cheese on him. Dairy free cheese is terrible. Other than that, Cole didn't drink milk and he wasn't too keen on yogurt so it was really just the cheese that was holding me back. I decided that I had to take this chance so that Friday I stopped giving him dairy from the time he came home from camp.
By the next afternoon the miraculous happened! Cole's tics all but went away. Not only that but his behavior was incredible. He was calm, focused and content. He became considerate and started doing thoughtful things for me and his brother like coming inside the house to get ice cold water for the both of us and bringing it outside!! This kid couldn't think past his right hand less than 24 hours ago and now he was a completely different child. I was in shock. Even his OCD tendencies dissipated. No more counting things, no more having to start from the beginning, less frustration and no more whining!!!
I was afraid to believe that what was happening was real. We had seen improvement in the past (although not as significant as this) and the tics eventually had come back. So I told Shannon what i was experiencing and she just filled me with positivity so much so that I was able to BELIEVE that healing was occurring. She told me it could take up to 2 years to see complete healing and that there will be bumps in the road but we should be at a new baseline for tics and the general trend should be towards healing. Knowing that I was following in her footsteps helped tremendously. She talked me off the ledge dozens of times. She also shared some great recipes for grain free muffins and cookies that I put in their lunch boxes everyday and they are a hit!
With one week to go before Kindergarten, Cole's tics had reduced dramatically to the point where an uninformed person would not really know he had any tics at all. The true test as to whether he was healing or just "waning" would be when school started. Tourette's Syndrome is characterized by periods of "waxing" and "waning". This means that sometimes the tics become more intense and more frequent and other times they tend to lessen and almost disappear (but never really going away completely) until they start to wax again. A neurologist would have told me that what I was currently experiencing with Cole was just a typical waning period and that his tics would come back just as intense as they had been in the past. But what most parents of kids with TS know is that school tends to be a huge trigger for tics. School is associated with stress and anxiety, both which stimulate tics and Shannon confirmed this with me as well. Thinking back to the previous year, I do remember Cole's grunts becoming more apparent right around when school started and then dissipating sometime in late October. It completely made sense and I would know for sure once Kindergarten started if this new diet change was just a fluke. Jake and Cole were not only going into a new class but Kindergarten was a new school as well. Big changes were just a week away and I tried to stay positive.
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