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

[Sparklerainbow1]

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?

[woosey35]

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

[Sparklerainbow1]

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

[woosey35]

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. 🤷🏻‍♀️

[Sparklerainbow1]

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

[Wellwhatalovelyday]

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.

[woosey35]

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

[Wellwhatalovelyday]

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.

[Namelesswonder]

My DD10 takes gabapentin and pizotifen for nerve damage in her gut. It definitely left her spaced out and sleepy until her body got used to it. She has now been on it for 1 yr with no side effects. It definitely helps her pain levels. I worried about her taking because of the possible side effects but it really has helped her.

[IvorHughJarrs]

Does this help at all?

[rocketgirl22]

I had a long appointment with the CRPS specialist. It is still a mystery medicallywhich is why you will struggle to find very much information. This alone makes you feel more worried, and isolated.

[rocketgirl22]

I had a long appointment with the CRPS specialist. It is still a mystery which is why you will struggle to find very much information. This alone makes you feel more worried, and isolated.

[rocketgirl22]

Can I also reassure you that my friend's son has this, he is 12, and went to the bath clinic - they have worked wonders and he is now walking and functioning much more normally. Not perfect, but so much better.

My friend was at her wits end, it is getting better, slowly - so slowly but progress.

Wishing you both the best.

[rocketgirl22]

I have CRPS as well after a fracture.

It is incredibly hard to fix according to my consultant, but keep going and hopefully things will improve.

I had initially truly agonising pain, and it was easily hitting the most I could bear, burning (as in on fire) feeling, v. painful shooting pains, severe swelling and odd thickness of nail. Feelings of revulsion towards that area. Hyper sensitivity. I nearly passed out having a scan, and even the smallest breeze is agony. It has been really hard to deal with and I have had my fair share of major operations and two children without pain relief.

After lots of physio and 8 weeks later I now have:

less swelling, hypersensitivity is easing, burning pain has gone but still finding it hard to move the limb.

I have been using fabrics, fur, everything to desensitise the area this has helped the extreme end of the condition. I have 'love bombed' and told myself over and over how much that part of me is loved and part of me. Sounds strange but seems to be working a little. I am stroking, massaging and moving it constantly. I am trying to use it normally (it still feels completely broken but it isn't)

I have a referral to the bath clinic and go on the 21st. Not sure what to expect....

Gaba was horrendous. I could not tolerate it, I was supposed to take 9 a day, and even 2 made me feel so spaced out, like a zombie, I felt sick and could not focus in a tiny bit. I can't recommend it at all.

I have since been given amitriptyline but have had a stomach bug so I am yet to try it. I am dreading taking it when I am better.

I am so sorry your child has this, it is so awful. I have had so many huge health problems and this has been the worst by far.

Sending you both and prayers for a quick recovery.

[Sparklerainbow1]

I have to check the dosage but my ds' maximum dose is 3x 3 x a day, so 9. This does make him woozy and even saw rhinos in the field rather than sheep one day!

[Sparklerainbow1]

He was prescribed gaba originally for his erythromelalgia which mainly affects his feet. The gaba helps keep the associated pain under control most of the time. His CRPS is a bit weird, perhaps it always is?! He has had bouts caused by joints subluxing, dislocating, banging an arm or even after a standard innoculation . His limb inflames, the skin is tight and purple, moment is massively restricted, it is very painful. Gradually reduced over a couple of weeks usually, although it has taken longer. Does that sound familiar?

[2old2beamum]

Hi woosey it was brilliant after about a week the screaming subsided, however it did make him very sleepy but as he is deafblind he is prone to nodding off if he is bored with life. Also he has never had a poor sleep pattern but this is preferable to screaming with pain.
We were told if Amitriptyline did not work we could try Gabapentin.

[Lichtie]

I take gabapentin for nerve damage in my back, was recommended by my physio. It works for the pain, but to keep working they kept upping the dosage which scared me a bit so I came off it.
The withdrawal was quite bad, night sweats, headaches etc but didn't last too long

[CotswoldStrife]

I have taken both amitriptyline and gabapentin for nerve pain as an adult. I found that the gabapentin worked better but there were side effects to both - amitriptyline made me so drowsy I had to take it early in the evening or the next day was wiped out and the gabapentin also makes me drowsy!

[woosey35]

Omg thanks so much!!

Sparkle - can you tell me about your sons CRPS?? What are his symptoms and how did it start?? I’ve never met a parent of a child with it...

2old - I was think amitryptaline..have there been any side effects?? Is it kinder than gaba??

[2old2beamum]

Son has taken Amitriptyline since he was 8 for neuropathic pain, it has been a lifesaver for him. Takes 25mgs X 2/day. Did zonk him out to begin with.

[Sparklerainbow1]

My son takes gaba, it works, too much makes him a bit spaced out but if we adjust it he does just fine and it works. He has CRPS and erythromelalgia, as well as other things

[woosey35]

Thanks so much, I will read that now. She is 9

[shewolfmum]

Woosey how horrid it must be awful to watch your daughter in pain. How old is she? I wouldn't touch that drug. The common side effects are quite horrific and if she is sensitive it, for me , would be too much of a risk. Here is the patient info leaflet.

<a class="break-all" href="https://www.google.co.uk/url?sa=t&source=web&rct=j&url=www.medicines.org.uk/emc/files/pil.3198.pdf&ved=2ahUKEwi6hKPBterZAhVqI8AKHfYqALYQFjABegQIBxAB&usg=AOvVaw1of0lMAn2ioVTz5PD4EQVx" rel="nofollow noindex" target="_blank">www.google.co.uk/url?sa=t&source=web&rct=j&url=www.medicines.org.uk/emc/files/pil.3198.pdf&ved=2ahUKEwi6hKPBterZAhVqI8AKHfYqALYQFjABegQIBxAB&usg=AOvVaw1of0lMAn2ioVTz5PD4EQVx

[woosey35]

CMOTD- yes last year she was diagnosed with ‘fixed dystonia’..it looked like a wooden leg!! Now it buckles in sideways, the muscles and ligaments are getting looser and looser and the knee joint itself is very unstable!!