Gabapentin??

[woosey35]

My daughter has CRPS in her right leg which has twisted her leg significantly meaning her knee keeps falling out of the socket!! She’s constantly in pain. The CRPS has started to spread too sadly and is now showing signs in her right arm.

We’ve been offered gabapentin but have been told to have a really good think before we take that step. Everyone’s being vague!!

Does anyone know more about this drug and the risks in starting it??

I’ve chexked out the website ‘medicines for children’ as advised by our consultant.

Thanks in advance

Woosey - my daughter is now 17, has had it since she was 13. It’s a horrible condition but we have had success with desensistisation and my daughter now manages each flare up relatively quickly. There’s a Facebook group for mums of kids with CRPS - they are very helpful.

Sparkle rainbow - how did your sons CRPS start??

Whatalovelyday - you say your daughter has flare ups..does it come and go??

I’m not on Facebook so can’t access any groups.

My daughters seemed to show at about 3yrs old. She used to get pins and needles in her right leg a lot. These then progressed to cramps. The cramps would come and go as usual cramps do. Then they got that they wouldn’t subside. The cramps would literally cramp for weeks on end. Eventually making her leg stiff and wooden. Then it would go. She would have episodes of about 10weeks then they’d subside. Her current episode though, she has had muscle cramps that seem to have distorted her knee joint to a wierd position and causing so much pain. But I look at it and think of course it’s goinf to hurt..she’s walking on a leg that’s in a strange bent way!!
She has had desensitisation last year with feathers etc but it didn’t work. She couldn’t have a breeze on her leg, and water droplets were impossible!!
We have had the initial consultation at Bath. They are very good. We are due to go for a weeks therapy however it seems she may need surgery now on her leg to straighten it so Bath cannot take her on while this is in limbo!!
I just feel lost. She’s also for anaphylaxis so a lot of the meds pose a real risk. Just feel it’s never ending. If we knew this was going to be how it is, we could prepare and change for it. But we don’t know if it will improve or decline. Currently it’s jist gradually getting worse and worse. I really feel for her

Yes, it does come and go. She has it in her foot/lower leg and then her hand/arm. It’s very tough but when she has a flare up (mostly happens in her hand at the moment), we work really hard - firstly desensitisation and then we try to play games - stupid things like moving sweets from one pot to another with specific fingers or with chopsticks - and eventually the pain seems to subside.

Sorry my son has been poorly so not been on. His CRPS was probably caused by Ehers Danlos Syndrome. How are things?

Thanks for your replies.
Had a bit of a rubbish day today. Dd’s Knee has been really twisted. They don’t know til the mri next week how bad the damage but the probable cause is muscle spasms in that leg. Her knee cap is out of place on xray and her leg barely holds her weight. So she’s now in a full leg hinges brace and crutches. I just want to know if this is going to be it. No return. Her CRPS itself seems to be in remission again but she’s left with twisted joints from it. Her hip is twisted too but her knee may actually need surgery to rectify now. Mri next week. 🤷🏻‍♀️

Oh no, I am so sorry. Has your daughter been diagnosed with hypermobility in her joints. This is all sounding very familiar to me.

No she hasn’t. What is this? She was born with dysphagia so has always choked when tired. Her swallowing muscles aren’t great. Also she’s been diagnosed with a weakened diaphragm so her breathing isn’t always synchronised. I’ve just been guessing that the muscle spasm and unpredictability in her leg is the cause and twisting her knee and hip. It’s just one thing after another. And it seems progressive too which is so hard. Seeing her now in a leg brace hopping around makes me wonder if this is it

Sorry d's has been poorly again and dd2 has been d's with a vascular disease which d's has too so life a bit rubbish. Joint hypermobility syndrome disorders or its more significant counterpart Ehers Danlos Syndrome is a genetic condition in which collagen is too elasticated and causes a variety of different symptoms including hypermobile joints, leaky heart valves, lax throat and mouth soft tissue to name a few. Perhaps worth a read up on Dr Google, then a consultation with gp go and a referral to a good paediatrcian or rheumatologist?