05 October 2015

Finally what seems to be an Answer.

I mean, would you want to sleep with that stupid thing around your neck??

Over a year ago, my sweet Liam started a new thing with his 'mouth'. While maddeningly frustrating for him and us, we chocked it up to it being one of Liam's newest stims (a behavior that is used to stimulate yourself in some way- honestly the best way to describe it) and waited for it to pass.

When Liam was just a wee thing he would chew on his inner right cheek. He did it for so long that he actually built up a callous in his cheek. After a year of that he moved on to sticking his tongue out and biting it. I have lots of cutesy pictures of him doing it. Then he moved on to sucking in his bottom lip and biting it. Lots of cutesy pics of that too. And then the newest one started. He would open his mouth, lock his jaw, and sound like he was choking. It's real cute let me tell you....

We thought this was another stage and it would pass but as the year, now year and a half, of doing it has rolled on with no end in site, it has had me asking questions to everyone in the medical world he sees. I mean, he will even do it if he wakes up at night! We first started out with OT who was working on oral motor issues with us. She had no idea what he was doing, is it on purpose? is it unintentional? is he doing it due to his CP? We worked at prompts to get him to stop when he started and let me tell you, he would work for Katie, cooperating like the cute little guy he is, but when he got home, nothing. He would actually gag on me if I tried the prompts. And you all know he can vomit at the drop of a hat if he gags from all of his years of experience.😳 So I quit that super fast!
After that we had PT look at him. If you need a PT, this is the one. She knows her stuff, loves her kids, and kills herself weekly loving on babies to make their lives better. She had the same wonders we did about Liam's purpose in sucking in air and choking himself. She would do a move that would make him stop it instantly. But watching him do it with her made me realize something, Liam wasn't 'always' doing it on purpose. Then one day during therapy instead of stopping him, she let him go on and on and on. Over and over he would cock his jaw open and compress his airway, then inhale deeply, close his mouth, then start again. And she was at a loss.

We had an appointment for Liam's yearly pediatrician check up ( thank God my little medical conundrum is healthy and we only have to go once a year) and when I showed her, she'd never seen it before. Not surprising, Liam humbles everyone I tell ya.

The following week we had a highly anticipated visit with a specialist in Chapel Hill to speak with him about Liam's hips. When I told him why Liam was wearing a neck brace and what would happen if I took it off, he nodded his head. I knew then this appointment was going places. I took it off and Liam performed right on time. Choking and sputtering away.

I told him no one I had talked to knew what he was doing and was hoping he could help us. He asked a bunch of questions and that brought us to the real issue and a solution (hopefully). liam is not doing it on purpose. His dystonia is causing either his neck, his throat, his jaw, or his pallet to contract and making him do it over and over every day. He said he has seen kids with it and recommended us to an ENT in Chapel Hill that can help us further. He also suggested we try Liam on Baclofen. This is a drug I know much about from being in the CP community and one we have never needed for Liam because Liam isn't too spastic in his muscles.

While I am thrilled to have a cause, I admit I am not thrilled about Liam being on the medicine. It has to be taken 3 times a day because its effects wear off after 6 hours. We were to start this week with only one dose at night to get him used to it because it (can) makes them sleepy. I was worried about how sleepy it would make him and so far on day 3 he's not shown any side effects. So tomorrow I am adding in dose 2.

We are praying this medicine helps him. He is so frustrated with this jaw thing and to have a medicine help him stop doing it would be a game changer for him. He wouldn't have to wear the stupid neck brace all the time, he wouldn't cry at night because he's woken up and he's sputtering for air, and he could concentrate better in school. 
post signature