Growing pains in hypermobile teen

[AppleTreeSeed]

Hi,

I wondered if anybody might have experience of how to reduce growing pains for a hypermobile teen boy?

My DS is 14 and is just at that stage where his limbs are growing suddenly and in big spurts. His hands and forearms are long and slim now (though not as long as DH) but his upper arms are still child size. DH and I are only 5'10" and DS is 5'8" just now.

DS is only 2 inches shorter than me, but his femurs are about 10cm shorter than mine, so I think he has some distance to go.

The problem is that he is ASD and hypermobile, and whenever something grows it hurts a lot. He is very sensitive to pain, when pain kicks in a huge performance ensues, and we can't get anything done. He has medical trauma from toddler years so will not go to see a physio about it. (He's not in school - has EOTAS home school. We see a therpist weekly about the PTSD.)

A while ago something happened with hip growth and he couldn't stand at all for 4 hours because of the pain. I figured out that trying a strap round his hips stopped the pain. After about 3 weeks the pain went away by itself.

Now his knee has gone funny and he is hopping about the place on one leg making loud protestations about the pain. I offered a strap but he doesn't want it.

He used to play the piano with great gusto with both hands but currently can't play at all and can barely type.

We saw a paediatrician and she said he needs more vitamin k. We got a lot of salad into his diet and while it did improve the situation, it didn't sort it.

I won't see the paedatrician until January now and he can't bear weight on one of his legs.

He's been assessed for Ehler danlos and doesn't meet threshold for diagnosis. He is hypermobile in his hips and the arches of his feet, and his elbows bend far enough to meet the Ehler Danlos threshold, but not the rest.

I just wondered if anybody else has watched a hypermobile teen go through the growing spurts and if they have ideas of how to make it more comfortable?

Thanks!

Sounds like he needs to see a physio for exercises

Thanks, yes, that's what I thought. I might need to find a way to do it over zoom.

Is it definitely growing pains rather than subluxations? Needing supports and being held in sounds more like his joints are lax, maybe slipping partially out of place and getting stuck. That often gets significantly worse through puberty and can settle as an adult.
If he won't see a physio you could try looking up information about strengthening and stabilising in hypermobility. Building muscles around his hypermobile joints, protects them.

Gosh, yes, I just googled subluxations and that does fit exactly with what seems to be happening.

I really did wonder if his joints were dislocating because he makes really a lot of noise about it when it happens. It's hard to say because he is often very vocal about things that others would try to conceal.

I got him to do hip exercises with the hip problem but I worry about stooging in with knee exercises, just in case I get it wrong and make the problem worse. I suppose we have to exercise the right muscles or we risk pushing the joint further out of whack don't we?

Thanks for mentioning that. I didn't know that was possible, or that there was a word for it.

It would be so great if there were exercises to get his hands working again.

He says his tendons are too short in his arms too and he can't fully straighten his arms. I don't even know where to start on that. The paediatrician said to do yoga, but there are so many problems and we're a bit overwhelmed.

He also has 17 veruccas and multiple food intolerance. The wartabator seems to be dealing with the veruccas, but it all takes time.

Thanks!

Didn't want to read and run. I strongly recommend covering verrucas with airtight plasters - I used Compeed gel plasters cut to size - to cover it continuously over a few weeks. I had a persistent one for years and tried freezing etc but nothing else made any difference. I think it took 4 or 5 weeks of continual plaster use (you can leave them for about a week before they come away but don't have a day off or it'll "breathe") and it finally went. Not sure if that is helpful but I'm a bit evangelical about verrucas now!

Thank you very much, I really appreciate you taking the time to comment. We've finally found this machine called the wartabator that seems to be working. Verucca no 1 has shrunk to half it's previous size and we're all waiting in eager anticipation to see if another week or two might finish it.

That's pretty much all okay, but it's just the amount of time required. If we need to do millions of exercises too, it'll be full time job. Anyway we'd better figure out these exercises so his body starts working again. :-)

Thanks!

With exercises, it can help to do things that don't cause any sudden high impact to hit your joints, like jogging, running, contact sports etc
And instead do things like swimming, weight training, walking. But that is different for different people.

But also it does just get worse during puberty and it might just be something he learns to deal with.
Supports can help but not if the joint is actually out (because you would just be holding it out of place) but can be good if your recovering. Some people find compression items to help too.

It does help to work out what makes your joints feel worse, like I know if I go for a long walk in the morning, then that evening and the next day my hips and ankles may be looser and weaker and more prone to popping out, so I know to take it easier that day.

Thank you very much, that's really helpful to know.

Today we did a lot of focussed exercises.

We wore a rubber band round our knees and moved out knees apart and together again, against the rubber band.

We also did that thing where we sit on a chair and lifted our knees up to our chests.

Then we extended our lower legs so they were sticking straight out, over and over again.

DS said he thought it might be helping. He is doing a lot of work on his back muscles too and that is very clearly helping.

Thank you for this advice. Sometimes it just gets really hard to see the wood for the trees.

I’m hypermobile and suffered with growing pains as a teen. The absolute best thing I have ever done is start weight training. When your ligaments are loose, your muscles need to be strong to support the joints. I started with a PT to teach me correct form and prevent injury.
Yoga isn’t great for me as it increases flexibility which is the opposite of what I need.

Resistance bands are a great way to start btw

Tbh what you're describing doesn't sound like your average growing pains.

I've hEDS, it's been a pain in the arse all my life until I started weight training. But I do Tom Morrison mobility training on top but it's humbling and no way I would have touched it as a teen. You have to build muscle around the joints to help support them.

Unfortunately exercise is the only answer to make things more manageable.

It sounds like he should have been at least given the diagnosis of hypermobility Spectrum Disorder (HSD), which is basically for when you have symptoms of EDS but don't fit all the criteria

Jeannie Di Bon's website is a great start for exercises that help hypermobile people, she runs a 'Zebra Club' with online classes, and I think she has classes aimed at teens

Edited to add a link to one of Jeannie's YouTube videos for teens

Thank you very much, this is really helpful. The video recommendation is great.

The paediatrician said we ought to do yoga and I thought that was a bit odd, as a physio once told me that I must never do yoga.

The weight training sounds very sensible.

I read the Ehler danlos website and it said that it was common for patients to present with significant deconditioning because of having been discouraged from physical sports due to the hypermobility and that is exactly what is going on here.

I have explained to my DS and he understands that completely. We have started doing exercises with rubber bands for resistance and it is helping already, so we will keep at it and watch the videos.

Do you perhaps know of any good discussion forums for hypermobility? We are a bit stuck for a lot of stuff tbh.

The dyspraxia assessor gave us a letter to make sure DS would have access to a keyboard for GCSE exams, but he can't type or handwrite at the moment and the assessor has now retired. I'm home edding as DS got really bad anxiety at school this last year, so it's all on my shoulders. It's a lot to handle all at once.

Thank you very much. :-)

I think it's helpful to join a Facebook Ehlers Danlos support group. Significantly more traffic and expertise there.

Muscle building is the way. Building core strength also.

Thanks, I have asked to join. We have done our exercises again this morning. Onward and upward!