So, finally, more than 2 years after Em’s first big dislocation and ongoing, increasing pain, we finally have a prescription for some actual pain medication beyond Tylenol and Aleve. The pain clinic has prescribed neurontin, starting with a low dose and gradually building up as necessary. This is a welcome and long awaited development – in the beginning we were consistently told by doctors that they didn’t want to give kids pain medication. I do believe that if I ever hear that statement again, I just may spontaneously combust!
Of course, Dr. Tinkle doesn’t hold that opinion and he is the one who sent us on to the pain clinic. Unfortunately, he seems to be in the minority – as if allowing a child to suffer with chronic pain is somehow the best option. But, I digress…
Anyway, we are starting with 100 mgs, 3 times a day. Em took it for the first time last night and said it seemed to have helped. As I said, this is a low dose and we will almost certainly bump it up over the next few weeks. At any rate, we are glad that real pain relief is finally in sight.
Foot/Ankle update: Still a lot of pain and she can only walk on it if she is wearing the brace. (crutches are out of the question since her shoulders are so unstable and our house is not very wheelchair accessible, so it is an ongoing challenge) The foot is still a bit bruised, not really swollen – but that is typical for her. The RSD pain is my biggest concern – the neurontin could not have come at a better time. Hopefully, the neurontin will help us get that nerve pain under control before it gets out of control. We were lucky last time and hopefully our luck holds.
We have an appointment with the ortho next Wednesday – wish it could be sooner but it is what it is. I am keeping an eye on her foot and may yet contact Dr. Tinkle for any suggestions, but we will see.
This is the part of EDS that gets me every time…how serious is that ‘little’ injury? what if it is really serious? what if weight bearing is harming her? should she go to the ER? should she see a doctor asap? what if it is nothing and I am overreacting?
All I can do is the best I can do and right now that is wait and see! But, at least this time, she has some pain relief and I am thankful for that.