Should I be worried if my child is hypermobile?

[Fiona2011231]

A paediatrician just examined my 4-year-old son and said he is 'hypermobile'. He tried to assure me that it is not serious.

However, on NHS site, it said 'Joint hypermobility syndrome can be very difficult to live with because it can cause fatigue (extreme tiredness) and long-term pain'.

Is there anything I can do for a child that is so young?

Thank you.

Ooh, I want to know as well. DS (11) can do crazy things with his finger and shoulder joints and I wondered whether I should get him checked out as apparently there is a connection between hypermobility and some heart disorder...although I may be making that up

Re: tiredness, no, I haven't noticed that in DS, OTOH he moves a bit awkwardly/runs funny/doesn't have great coordination-not sure if that is connected to hypermobility or not.

I think there's different degrees of it. Ds1 was checked out as the teachers noticed that he could bend his arms slightly backwards at the elbow, knew this could be due to hyper mobility and wondered if this was why he was struggling with writing. He was thoroughly checked out and although he was diagnosed as hyper mobile it wasn't bad enough to be causing any issues. The struggle with writing sorted itself out with practice.

just googled it! ds (7) can bend his elbows wrong way, bend thumbs back to wrist etc and I never thought anything of it!!! should I be concerned?

I'm hyper mobile, occasionally have problems with my left hip but nothing major apart from that, mine is in most joints except my knees weirdly. I did have problems in final stages of pregnancy and when physically carrying my baby as my back bent further then it should of but a little physio sorted it out.

Hi, my DS is hyper mobile, I took him to see a paediatrician because he was very slow to walk and quite clumsy. Paediatrician spotted it straight away, I had never heard of it so was quite alarmed. He sat DS on my lap and virtually twisted his knees back to front (my stomach lurched at this!) and DS didn't even flinch. He was about 18 months old. I was reassured that my DS would grow out of it and that it would not impact his quality of life or his walking. It just explained why he was so slow to take his first steps. He eventually walked at 21 months. My DS is 3 now and you would never know he is hyper mobile, he is a typical active little boy. But I do still have 6 monthly check ups with the paediatrician. Other than that we just carry on as normal and it doesn't worry me.

My ds is 13 and is hypermobile, particularly in his hands. The biggest issue for him is that it prevents him from controlling a pen properly, he has to use a computer for all his work/exams.

I think it impacts in different ways for different people but his OT did say that everyone with hypermobility benefits from exercises to strengthen their core muscles so that is what we have been doing with ds.

My son is hypermobile. The key thing we were told is to keep him moving and active as muscle strength is vital in coping with the condition. He was diagnosed at two and has had orthotics in his shoes to help his feet that pronate due to loose joints at his hips. This has made a big difference. While he isn't the fastest at running, he is getting to a point where he can keep up with other boys. In terms of tiredness, the physio said that they can get more tired due to the fact that the have to recruit all their muscles to hold their joints in place. It never affects him during the day but means he sleeps like a dream. I was a little crushed at first until the physio told me that lots of swimmers, gymnasts and divers are hypermobile!

There are different degrees of hyper mobility. Three out of four of my DC's have hyper mobility, as do I.

DD has occasional issues with pain in her knees, but very rarely.

DS3 has joints that easily click in and out of place, and has issues supporting himself while walking without orthotic inserts, but doesn't seem to have too much pain.

DS2, on the other hand, is in severe pain daily with his joints, has frequent dislocations, didn't walk until he was 3y7mo, has weekly hydrotherapy, daily Physio by me, sees the hospital Physio every 6 weeks, needs special hospital boots AND orthotic inserts, it hurts him to hold a pencil (and his thumbs dislocate if he writes for too long), He has kyphosis in his spine giving him a hunched back, it has affected his bowels too - he has issues with slow bowels because his bowel muscles are too lax to have proper motility, so he is on daily medication for that...

He is at the most severe end of hyper mobility.

I am almost as severe, and have developed painful arthritis because if the joint laxity.

For girls with severe hyper mobility, SPD in pregnancy is almost a given, too.

So you can range from my DD, at the mild end of the scale, to my DS2, who may still end up in a wheelchair through hyper mobility.

My DD has just been diagnosed as being hypermobile and we are waiting a referral to physio. It affects my DD mainly in her knees and this does cause her pain when walking, she also gets tired easily.The Dr said its because she has to work so much harder at keeping her knees in a good stable position.
He just advised if we were going to be doing a lot of walking to give pain relief before we go and to try and build up the muscles around her knee, He also said it should improve with age -(the pain and tiredness).

I have a friend who is a physio and specialises in sports injuries in teenagers. One of the first things he checks for is hypermobility. These kids are fit sporty teenagers who had no idea they were hypermobile before, which sort-of proves it can be a non-issue.

However, he does always advise them to avoid stretching exercises and focus on strengthening exercises instead for obvious reasons.

I'm hypermobile, but not really bad end of the spectrum. It's mainly my pelvis, hips and feet. I can semi-dislocate my hips, which was useful when dancing. I had had lots of back problems and seen many types of therapists. A French osteopath told me that because of the hyper mobility, I was to avoid skipping (one of my favourite sports), high impact anything (aerobics, running etc) and yoga. I was pretty gutted as i enjoyed all those things, but followed the advice and hey presto very, very few back problems.

As someone above also said (am on phone so can't see who), the osteopath recommended building up core strength and strengthening specifically around the unstable joints.

All the people who had treated me before had asked if I had been a child gymnast because I moved like one (ha! was a sedentary bookworm!). Given the troubles it has caused me (not all gone into here) I would highly recommend not pushing your child into the sports that take advantage of hyper mobility, but ones that will support and stabilise their body as they grow.

kyz1981 - if it's her knees or hips that are hurting because of struggling to support her whilst walking, ask your GP to refer her to ORTHOTICS for either special Piedro boots or orthotic inserts.

The Orthotist will assess her and decide which would be most helpful to her.

It really DOES make a difference, my DS2 suffers from far less pain when he has orthotic inserts and Piedro boots.

It's well worth asking for a referral, as the pain can worsen with age if they need orthoses and don't have them.

My DS2 is 9y6mo now, and still needs them.

Actually, if you are seeing the Physio, they can refer you on to Orthotics.

To the poster who said that they have been told that the pain gets better with age - IME that's not always true.

From my own personal experience, yes, you learn to 'cope' with the pain, but that doesn't mean that you aren't in pain IYSWIM.

DS2 goes about his day fairly happily now, but when you ask him to rate his pain from 1-10, he will invariably be at a 6-7 at best. He just lives with it because, like me, it's all he has ever known.

He is now getting to the point where the Physio has even discussed regular pain medication with me, we are in decisions about that right now...

His pain, and mine HAVE got worse as we have got older, and other people that I have spoken to with severe hypermobility say the same thing, that the pain is worse, but they have learnt to 'cope' with it better.

Lots of GP's and physio's don't seem to realise this unless they get you to rate your pain every day.

Some days my DS2 is in tears because he can't even put his feet on the ground to get out of bed without me massaging his feet, ankles and calves.

Yet after I've done that, despite being in pain still, he will get up and get on with his day.

Massage is very good, as are warm baths.

Swimming is an excellent choice of sport for someone with hypermobility because the water supports their joints.

In the SN section on MN, we have a thread for those with EDS and hypermobility.

Link to thread

Can I suggest the HMSA. Both myself and my ds has Eds, type unconfirmed at present although ds has EDS lll, it affects him every single day, he is a part time wheelchair user because of it, he chronic pain, fatigue, brain fog, gastro problems, daily dislocations, subluxations, skin issues and learning problems all due to EDS. It makes me so mad that doctors just gloss over it and say it is not serious,my ds is 10 and has all of that to cope with. I am pretty much the same as him but as an adult I can deal with it, with a whole heap of daily meds. This is something that needs far more knowledge especially within the medical professionals!

CouthyMow - Thanks for that I will speak to the Physio- The Dr did not think she had it bad just hypermobile but not severe enough to be tested for EDS or hypermobility syndrome he just bent her calves the wrong way and said she was hypermobile,- that was the explanation as to why she was having so much pain.

She is almost 4 and refuses to walk most places where it is a lot of starting and stopping as these seem to hurt her knees more.

Will see what physio says but I will make sure they know how it affects her.