Em is having terrible back pain. I mean, she always has back pain, but it seems to be getting worse and worse. I have an email out to Dr. Tinkle but haven’t heard back from him yet. I would really love to get meds that will help her sleep and do something about the back pain – something has to change for the child. How long can she not sleep at night because she hurts so bad?
I am getting more and more tempted to take to her back to Dr. Woods, the ortho. I am fairly sure he would order an MRI of her back. But, I feel like I should wait until I hear from Dr. Tinkle.
It is so hard to know what is just pain and what is pain that is a symptom of something serious. I am convinced that she has tethered cord syndrome as well – which would explain the back pain and some other stuff. But it could be other things as well, so I just think we need a scan to see if anything is going on. Something is going on – we just have to find out what it is.
She was trying to do her exercises last night and confided in me that doing the chin tucks hurts her back – in her tail bone. More ‘proof’ to me that it could be tethered cord. The other odd thing going on is the arch in her back. When she lays on her back, her back stays arched. When she brings her knee up, it gets worse when it should flatten out completely. The arch is so pronounced that I can insert my hand vertically and still have room to spare. She cannot force it down either. Very strange – the OT and PT noticed it last week too but I don’t think they realized how bad it hurts. Not sure what it means, but I am sure it is involved with the pain she feels in her mid/upper back and ribs. It prevents her from laying on her back because it hurts so bad and this is why she can’t sleep – she cannot get comfortable in any position.
Everything is so complicated with EDS and there are so few experts. Everyone else is just groping in the dark for answers. Answers are exactly what we need but where can we get them?