Almost 2 months ago, as I was tucking Utah into bed, he revealed something to me about his tics and how they affect him at school. I had no idea about this and was so relieved he told me.
I posted about it on my personal Facebook page and got a lot of support and advice.
It’s a touchy and controversial subject: medicine and kids. I’ve never been one to choose one side over the other. I’ve always felt that it’s a personal decision to be made by each family unit.
I think working in the past as a Special Education teacher and Recreation Therapist with kiddos with disabilities has taught me not to judge any parent on what they decide to do or not do, as far as medicine is concerned. I’ve seen many kids helped tremendously by taking medicine. I’ve also seen some do just fine without meds. It’s always a case by case thing, like most everything else in this world.
I got private messages and phone calls, in addition to comments on that thread — all from loving friends & family that just want to help and support us.
I called our neurologist Dr. Kane’s office the next day. We spoke about some different options. I inquired about possible CBD use. The nurse, Madison, mentioned that they can only prescribe that for patients with epilepsy so far in Texas. I know I could just buy it at a CBD shop…but I’d want exact info on dosages, etc… The nurse then told me that Dr. Kane suggested we try a medicine called Guanfacine. She said the only side effect was some sleepiness but that it tends to go away after a few weeks. So we gave it a try. He started with 1/2 a pill for a week then a full pill after that each morning with breakfast.
It was amazing! It worked so well. His tics were completely GONE. I honestly even forgot he had tics at all.
The morning of his birthday party at a local animal shelter, we forgot to give him his pill and whoa, there was a huge difference.
I went up to tell him that we’d be singing “Happy Birthday” and eating cupcakes next and his tics were off the charts!! About 15 in a row – neck stretch, eyebrow raise, nose scrunch, upper lip pull — repeat. It was shocking. Of course, all of the excitement most likely lent to this — tics increase with a lot of stimuli. But still, it was a big reminder that he had them still, and how much the medicine really did help.
A few weeks later, I started noticing a sort of flat affect & dulled down personality in him.. He just seemed…quiet, tired, subdued and even almost sad. It broke my heart. I asked Neil if he’d noticed anything. He said he hadn’t. But their relationship is so heavily play based. I’ve always noticed how Utah completely perks up when his Dada is around. So then I figured maybe I was just blowing it out of proportion. Though, I didn’t completely write it off. I wanted to trust my instincts. But I planned on just keeping an eye on it and maybe checking in with his teacher if it persisted. Heck, it could’ve just been that he was just back in school after his nice, long Christmas break. So, maybe he really was just tired.
I asked him a few times – “Are you okay? Are you sad?” To which he’d reply, “No, I’m just tired”…literally kind of like how Eeyore would say it. It was so strange.
It’s crazy because the Guanfacine worked SO amazingly well on his tics. Like they were legit gone! I even forgot he had them. But then if that means HE’D be gone too?! No thanks! I’ll welcome the tics gladly and I think he would too.
Last week, his incredible teacher pulled me aside at pick up and mentioned that she’d noticed some quiet, dulled down behavior and a flat affect in him. I immediately thanked her and felt a rush of overwhelm, sadness and relief. I’m surprised I was able to keep my tears at bay that day. The relief was immense, though. I knew something was wrong. It was so validating, but also so scary.
I called Dr. Kane’s office the next morning. He recommended we cut the pills in half again and see if that helps. If we are still noticing the flat affect, we will try something else.
We found that chewing gum helps a little with his tics. His amazing teacher allows him to chew gum in class – as long as he keeps that special privilege to himself and the gum in his mouth. He’s done really well with that so far.
Since we switched to just 1/2 pill each day, his big, silly, happy-go-lucky personality is back! And his tics are still kept under control! I’m so very thankful that we have this medicine. I’m so thankful for Utah’s awesome teacher that is such an incredible team member. I’m so thankful for Dr. Kane and his nurse, Madison. We’ve got a great thing going with this little village and Utah is one lucky and loved little guy.
Thanks for following along on our journey with the wild world of Tourette Syndrome. It’s been a trying time but overall Utah is happy, healthy and very well taken care of. We wouldn’t change a thing about him.