Tuesday, June 7, 2016

An Update on Ry


On Thanksgiving Day, Riley casually mentioned that he thought he had developed a twitch. It was kind of said in passing and I didn't put much thought into it. A few days later I sat behind him in an informal service and noticed him fidgeting like crazy in his seat. I was good and ready to get up and go tell him to be still when I felt like the Lord put his hand on my knee and said "watch him" So I did. My heart sank. I remembered Riley's comment from Thanksgiving Day and I knew. I quietly pulled out my cell phone and made a short video of him from behind without his knowledge. I sent it over to our family doctor who is also a friend of our family. He responded quickly and said to come to see him the next morning. And so we did. 

Tourette's syndrome. 

So we went to the retina specialist and it was decided that he should be referred to a pediatric neurologist. Of course, that guy is also in Atlanta. We made our way there yesterday and had the shortest wait in this history of appointments. The doctor was kind and thorough. Riley twitched a good bit during the visit, which was helpful, because that confirmed the movements without needing to order an MRI. For now, the diagnosis of Tourette's Syndrome has been put on the shelf, maybe for later. Riley has been twitching for six months and if he still is in another six months it will be "official." His twitching could possibly be caused by the rapid amount of growth his body is doing. You will never believe this, but my once scrawny tiny Riley measured 6 foot tall at yesterday's appointment! 

The appointment was important for several reasons and definitely not a waste of our time. (That may have crossed my mind.) Riley's movements have now been medically documented in the same health care system in which he receives treatment for his eyes. If he does begin to have sudden problems with his eyes, they will now also consider a neurological perspective as the cause, and not just blame everything on the disease. They also now have a basis on which to reference for the future in regards to the frequency and intensity of his ticks. 

Riley's ticks at this point have been upper body. He can feel them in his shoulders, neck, arms, face, head. He has some vocal ticking (think about making a clicking sound with your mouth) that he does not make often. He makes some odd mouth movements that he is unaware of when he does them.
None of these things have caused Riley much distress. We have noticed that when he is more physically stressed (like during wrestling season and track season) he ticks almost constantly. He isn't being bullied. Nor is he mentally stressed about it. He does have some mild O.C.D. tendencies that is associated with Tourette's Syndrome. 

Our trip there and back was good. I thanked the good Lord once again for not allowing me to live amongst the Atlanta traffic. My nerves were shot by the time we made it back into "regular" traffic. Riley will celebrate his 16th birthday in just a few weeks. He has his heart set on a kayak and has been working odd jobs to earn money to help pay for one. He should have earned about half of the cost of a kayak by his birthday and we will cover the remainder as his birthday gift. Riley's time spent with the Boy Scouts has really pulled him out of his little hole he was in for so long and taken him on some really fun adventures. He feels like this kayak is just going to take that to the next level. :)

Thank you to those of you who still stop and check on Riley from time to time. He is doing so much better now than we thought he would be at this point. I credit that fully to the prayers that have been said for him over these past seven years. He is a good boy.

God is so sweet to us. 

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