I apologise if this turns into a stream of consciousness, I'm absolutely worried sick and I just need to get this down.
I have a very rare (1 in 50,000) genetic disease called Heritary Multiple Exotoses (HME or MHE). It's probably easier to Google for details but basically it causes multiple benighted bone tumours which can press on nerves and muscles, and some shortening and sometimes bowing of the long limbs. I have it as my mum has it, and unfortunately my DS12 also has it.
In the last year or so, he's developed pain in various parts of his body. It's so bad he goes to the school office almost daily for Neurofen, and nothing we give him seems to help. Most recently, in the last 3 months or so, the pain has become daily in both his shoulder blades, both knees, both feet and both hands.
This is not typical for HME. I never had pain like this as a child, not even remotely. His paediatric orthopaedic specialist does not believe its the HME causing this pain.
He's had a blood test, for which we are waiting on results, and an MRI of his shoulders and hands is scheduled.
In the meantime I'm at a loss. No painkillers seem to help. Deep heat doesn't help. He's not my happy, bubbly, quirky little lad anymore.
He's not begun puberty yet, he's very much still a little boy. On the contrary my DSS12 is fully developed and his voice has broken, however DS seems completely untouched by puberty and I wonder if his pain could be something hormonal.
There's also the psychological factor. His dad and I are currently involved in a court case concerning his future custody and living arrangements. DS says he's fine and I tell him he can always talk to me, but he's a funny little thing and such a closed book, when I ask him how he's feeling about things he always just says "good"
I'd be interested to hear whether anyone else's DC have experienced anything like this and what turned out to be the issue.