Joint dislocations and Ehlers Danlos Syndrome

by frogpondsrock on June 26, 2012

in Ehlers Danlos Syndrome,headfuck

In 1993 I smashed my knee in a serious drinking accident. I put up with floaty bits of bone and recurring spontaneous dislocations of my patella until 1998 when I had major reconstructive surgery. I am not a squeamish person but some things do make me nauseous. Watching someone dislocate any part of their body, would have to be top of my vomit inducing list of things to avoid at all costs.

Last night I was quietly minding my own business and faffing about on the internet, when my son David asked me to help him relocate his hip. He was having problems with a subluxation (partial dislocation) of his hip and needed me to put my hand on his hip so that he could wriggle his hip joint back into its socket. Once his hip was successfully back where it should have been, I was visibly shuddering and David cheekily grinned at me, as teenage boys are wont to do when they know they haveĀ  successfully “grossed their mothers out”

Oh my word internet itĀ  is a terribly creepy sensation, to feel your own child’s joints popping in and out of place.

We have found that whilst the Celebrex (anti inflammatory) have reduced Davids joint pain quite a bit, they have also had the unwanted side effect of making his joints very loose and floppy.We are between a rock and a hard place here. The subluxations and dislocations cause heaps of pain, Celebrex eases the pain but increases the laxness of his joints and so around and around in circles we go.

There is no such thing as a magic bullet with Ehlers Danlos Syndrome, though Veronica and I are still looking.

On the upside, taking the proton pump inhibitor pantoprazole of a night time instead of in the mornings has reduced David’s nausea to a manageable level, where he can actually manage to eat some breakfast. It was also lovely to kiss my son good bye this morning and only smell toothpaste on his breath rather than dead things. So three cheers for pantoprazole.

On the weekend David was off with his friends, doing teenagery type things involving steep hills and long skateboards. On Monday morning David could not walk and stayed in bed all day. Normally I would view these stay in bed days with suspicion as it is very easy to assume malingering when a disability isn’t obvious, even when it is my own child who has the disability. If I am honest, especially when it is my own child who has the disability, as I expect the kids to push through and keep on doing even when it hurts.

I was grumpy with David for missing school yesterday as all the days he has missed, oh so many days, are piling up and piling up like so many red Xs on a calendar. I was grumpy with him Internet, until I felt the grinding of his hip joint slipping in and out of its socket and then I was ill for him and oh so sad.

He is 18 in four days time and he should be riding his skateboard furiously down all of the steep hills all of the time, not asking his mother to relocate his hips.