Time for a follow up on Jarvis' condition, Triphalangeal Thumbs.
First off, some background. When he was 8 months old, Jarvis was diagnosed with triphalangeal thumbs. He underwent some testing to make sure the condition was isolated and was cleared of any other issues. We started seeing an occupational therapist to make sure he was using it appropriately and to learn activities to improve his use. In January, she noticed a deviation (curve) in the last joint of the right thumb and had us start night splinting. However, it was very difficult to get his finger in the small splint and the pediatrician on base went ahead and got us a referral to a bone and joint specialist.
We headed to Bismarck again on Thursday to see the specialist. We were thrilled to finally see someone who knew what the condition was and what should be done. He made sure we had completed genetic testing and heart testing, took a look at the x-rays and determined that Jarvis was using his thumbs well. Often, children with this condition have weakened tendons and muscles that make it difficult to extend their thumb away from their hand but Jarvis is able to do that fairly well.
In the past 6 months, we have noticed a deviation starting on his left thumb as well as the right. He told us that the growth plates between the bones were growing unevenly to one side. This is apparently common in bone/joint abnormalities because the body isn't sure how to handle them. He recommended splinting, but a slightly more extensive one. He will be wearing night splints on both thumbs to encourage the growth plates to even out for 6 months. We will have a follow-up then and determine to stop or continue splinting, or if surgery is necessary.
The splint is the length of his forearm and holds his thumb out from his hand (to strengthen those tendons) and holds his thumb in the channel using velcro to hold the last joint of his thumb straight.
It was a long, long day for the bit. We had to be up at 6am to make the trip there (normally 2 hours, but took 3 because of flooding road closures in town). The appointment it'self was rather quick, but the wait for the therapist to fit us in to fit the splints was over an hour, and it took him an hour and a half to fit both splints correctly. We really appreciated them fitting us in though, so we didn't have to make another trip! Jarvis did rather well considering it was a 3 hour drive (that he didn't sleep) and 3 hours being in a doctor's office, then another 3 hours home. Actually fitting the splints was difficult because they had to be hot to be mold-able, and he kept saying 'hot, hot, hot, hot" and trying to pull his arms away.
He has no use of his thumbs while he is wearing them, so we made sure to have a paci-picking-up practice session before bedtime to make sure he could actually still pick up the pacifiers while he is in bed. He doesn't mind them too much, but we are thankful he only has to wear them at night. It will be an adjustment period for him, but hopefully something he gets used to.
They have little socks underneath the splints to protect his skin and absorb some of the sweat, and to protect him from the edges of the velcro. We will be carefully watching for any rubbing points or raw edges and hope we do not have to take another trip to Bismarck for a re-fit.
Here are a few pictures of our practice session!
Gig 'Em Ags! :P
The channel for his thumbs.
And yes, they are camo...
Jace keeps saying it's too bad he's not a little older and watches TV, because they would be the perfect 'iron hands' or Batman's web shooters. Haha, I can only imagine how much fun a 5 year old might think these are!
