Riley was diagnosed in February with Tourette's Syndrome. I know some of you are thinking...I have never heard him yell cuss words. Well, that is actually quite rare in the Tourette's world. He doesn't yell. He moves. He jerks or twists or stretches or shrugs. Movements that may seem normal, until you watch for a while.
On his first neurology visit, we talked about medication. He was almost 8. We felt that he was old enough to help make decisions about that kind of stuff. He did not want to medicate. Which was fine by us. Then on his birthday, he changed his mind. So we began a drug called Clonidine. It is really a high blood pressure medication that when given in small doses, can help with Tourette's tics.
We have tweaked with the dosage (per doctor's orders) for a few weeks. Things have come to a head with that. Last night we had a little scare with it. Recently we have increased his dosage to 0.1 mg in the morning and 0.2 mg before bed. A side effect of clonidine is sedation and low heart rate. Riley had slept for hours on end since changing to the new dosage. Last night when we checked..his heart rate was in the low 50's which is not good. So after a call to Dr. Asghar at 10:30 last night we are backing his dosing off and getting ready to try something different. Clonidine only works in about 25% of Tourette's patients.
My heart breaks for Roo. He cries himself to sleep most nights because his body starts moving and it takes a while for it to stop. He wants it to go away and wants to know how long it is going to last. He wants to be like everyone else. His body at times hurts from all the repetitive motions.
He started all this at 4. I knew right away what it was, but we just waited and watched. The tics got worse, and are continuing to increase in the number of them. At any given time he may have up to 10-15 different movements that he does. A lot of people do not notice it. Which is great!!! He tries hard not to do the movements out in public. But when we get home...they come out. We have tried to tell him to just tic and not worry about other people, but that is easy to say when you aren't the 8 year old little boy who is not in control of your own body. Some kids out grow this and some do not. It does get worse during the tween/teen years. Our worry is that we have seen it progress so much in the last 4 years that we are afraid of what the future might have in store for him.
He is strong. He is so kind and loving and funny and silly and loves Star Wars, and baseball and golf... and all the things that 8 year old boys love. Tonight he was crying and I told him that I wish I could make it all go away. I would gladly take the tics myself if I could. I want so bad to make this better for him. But I can't and that is a real crappy feeling. He prays often that God will stop the tics. I try to remind him of Paul asking God to take his thorn in the flesh away. He prayed and God told him no. For a while that makes him feel better. I think if we could find even one kids for him to relate to it would do wonders. If you know of anyone..please pass on our info.
So this is Roo's burden to carry. At least for now, Roo will walk through this life with a ever present reminder of his burden. He will walk in grace and kindness and love. He will walk down the path as his Creator walks before him. He will walk with his Mommy and Daddy always cheering and faithful in the background reminding him that it is man that looks at the outside but God looks at the heart. God makes everything beautiful in HIS time.
So we will be faithful while we wait for God's perfect timing.
