Anyone got a child with hypermobility?

[bobstersmum]

I am looking for experiences from other parents of children with hypermobility.

Dd is just 2 but regularly gets joint pain, mostly her wrists but also her knees. I actually rushed her to minor injuries when she was just turned 1 because she was suddenly crying in pain holding her hand, I took her and she was examined and they said nothing seemed wrong but they did mention this and said to keep an eye out. The same thing happened a few weeks ago. Her thumbs especially seem to bend back way further than they should, and when walking holding her hand I often feel a clicky feeling from somewhere in her wrist. I have an appointment for her at gp next week but was hoping for advice here first as my gp can be very dismissive. How did you know there was a problem and how did you get diagnosed?

My ds has it but he’s a dancer so it’s an advantage in some respects! He also used to get lots of joint pain when he was little, that has improved as his muscles have gained strength. Everything clicks and clunks. Core strength has been slow to develop.

My nearly 3 year old DD has it. She didn't sit up till nearly a year old and didn't walk till nearly 2. She's never complained of pain but nursery flagged up the way she can bend and asked me to contact the gp. The doctor referred for physio but they wrote to me saying they won't do anything because she hit her milestones (she obviously didn't but admittedly yes, she now sits and walks albeit late). We did go private when she was 10 months & got the diagnosis as she wasn't sitting. So may have to go that route again, as I don't want to wait until there's an issue if I could have helped before.

Three (out of four) of mine have hypermobility.
One ..very floppy and bendy he didn't sit til 1 or walk til 2 and still wears AFOs (leg braces) now as a young adult but is no longer bendy and has gone the other way.over tight muscles.

The two girls met their milestones but were incredibly bendy and both had dislocations..usually elbows and we soon learned not to swing them between us . They were diagnosed by a paediatrician (due to the dislocations happening often) and both had physio (as did their brother)
Fast forward a few years... sadly as they have grown up the pain and the dislocations have continued. They coped brilliantly as small children and rarely complained of any pain unless a joint popped out of place (and we learned to help them back in) but after puberty both girls started to experience more pain.
Both are now diagnosed with Ehlers Danlos Syndrome, and as well as the pain and dislocations both have gut problems and one has POTS and heart issues.
Day to day they brace everything and get on with life... one is a doctor and one is a nurse, but it does affect them a great deal.
Both are still mind bogglingly bendy..can slide into the box splits with chests flat to the floor (!) but they try to protect their joints as much as possible.

Sorry that's not very cheerful! Some children DO grow out of it and are just a bit bendier and clumsier than usual, others like mine have an underlying disorder and only time will tell.

Ask the GP to look at the RCGP Ehlers- Danlos toolkit which covers all hypermobility disorders.

Thanks for the replies, @stillmedusa it sounds like you've all been through a lot! Dd wasn't late sitting or walking, she sat up at about 8 months and walked at 13 months, would that indicate that it isn't hypermobility?

My daughter is 14 months and is very, very bendy. I also notice her thumbs get stuck in clothing, and sometimes I catch her doing something and think "your leg shouldn't bend that way!!".

I took her to the GP and he has referred us to the paediatric team and she is seeing them in a few weeks time.

I also have hypermobility and spent many years with dislocations, but I have got better with age.

See your GP and ask for a referral.

Well my eldest walked at 11 months (can't remember when she sat but it was early) and she is the worst affected so not in our experience. Being our first we had no idea she shouldn't be able to fold up in the most ridiculous ways! The slowest to move has actually done the best!

DS has hypermobility and hands and knees crawled at 5 months, sat at 6 months, walked at 11 months. He has clicky joints and gets pain in his knees sometimes. He saw an OT for handwriting issues and they told me he was hypermobile.

My daughter (now in her 40's) is hypermobile. She got a lot of pain as a teenager and through her early 20's, in most of her joints. She never suffered dislocations but does also have related gut problems. She is still very 'clicky', particularly her neck and through her spine. Due to the delay in diagnosis and lack of understanding she is also pre-disposed to arthritis and doctors fully believed she would be in a wheelchair by her mid 30s.

After a lot of hassle getting a diagnosis she was referred to a specialist in London and to a brilliant physio who suffers herself and thoroughly understands the problem. She taught her the importance of maintaining a good core strength to protect her spine against over exertion.

30 years ago it was extremely hard to get a diagnosis and was considered by many GPs to be a 'non-condition', thankfully that has now changed.

One of my sons is also hypermobile, but to a far lesser degree and, looking back, I can see that I also was. I does seem to run in families.

Just marking place....my 23 month old has just been diagnosed and I’m pretty worried