Joint dislocations and Ehlers Danlos Syndrome

by frogpondsrock on June 26, 2012

in David,Ehlers Danlos Syndrome,headfuck,Sadness

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.

 

{ 14 comments }

Jayne June 26, 2012 at 2:56 pm

Big squishy (((hugs))) and omonthingie.

frogpondsrock June 26, 2012 at 4:32 pm

Thank you Jayne, Hugs are very nice :)

Mrs Woog June 26, 2012 at 4:28 pm

I could not imagine it. You are an amazing mum. x

frogpondsrock June 26, 2012 at 4:48 pm

Thank you. I don’t feel like an amazing Mum, I feel like this cranky old lady who nags and nags and nags. And only stops nagging when she feels her sons joints sliding around underneath the palm of her hands.

I have no idea how I slipped into the third person then either. Thank you for saying I am an amazing mum, you have made me smile and I needed to smile today.

Pixie June 26, 2012 at 4:53 pm

Massive hugs

frogpondsrock June 26, 2012 at 7:32 pm

thanks :)

kelli June 26, 2012 at 5:38 pm

yuk. when I read of battles with EDS I thank my lucky stars that I only have FMS.

frogpondsrock June 26, 2012 at 7:33 pm

I hear you Kelli

Rusty Hoe June 26, 2012 at 6:44 pm

Does it ever gets easier to deal with as a mum? I hope so, or at least that I can learn to hide my feelings more. As more and more of Liam’s joints start to be involved I must admit I feel overwhelmed by it some days. Big big hugs xx

frogpondsrock June 26, 2012 at 7:39 pm

Some days are Diamonds and some days are total shit.
I need to help David make some decisions about his future, his dodgy joints just exhaust him and he is finding full time school far too exhausting. I push him to push through at the same time that I allow him to sleep all day on a bad day. I have no idea RH what the fuck I am doing. I second guess myself all the time. I should see about the disability pension for him so he has some leeway to just be, but it seems like a huge failure, a cop out. My friend who was very ill once described going onto the pension as the beginning of the end for her and I wonder if I am carrying her words with me rather than carrying David’s with me, Like I said, I don’t have a clue.

river June 26, 2012 at 10:06 pm

I have no experience to base this on, but I imagine it must be really awful to feel your child’s joints moving in ways they shouldn’t far too often.
Is that David wearing a red nose?
I also think you’re an amazing mum.

frogpondsrock June 27, 2012 at 7:55 am

Yes River , he is wearing my “Complimentary Red Nose” The last time The Spouse was in hospital we had a visit in the ward from the Clown Doctors. The Clown Doctors asked me if I wanted a complimentary red nose. I accepted their offer and every time I put the Complimentary Red Nose on, I gave someone a compliment. It is a very good nose.

Andrea @ From The Sol June 27, 2012 at 6:10 am

What you are going through is heroic. To support and struggle along side your son is painful and hard and exhausting. There are no perfect answers, but your son, now soon to be 18, should be the one to make the decisions about what he wants to do and you can be his support system. A disablitly pension is good only if that is his only choice. He may find a place where he can be productive and find some self esteem by doing it. Help him in that direction … and again, turn to the pension as a last resort. Disabilties don’t go away. We have to put our energy into ways of working with them and that is what you are doing. I am sorry you have to bare this … I wish life was more kind.

Andrea @ From The Sol

frogpondsrock June 27, 2012 at 7:57 am

Thank you Andrea :)

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