18 month old with hypermobility syndrome... Any one else going through this?

[Browniesmum]

My son was dx at 14 months with hypermobility syndrome. He was late to sit (approx 11months) and started crawling around 16 months. He pulls himself up to standing on everything but is very clumsy and is always falling over and loses his balance easily. I was just wondering whether anyone else is goi through this and what age your lo started to walk etc. also Iv been looking into getting him some piedro boots, anyone recommend these?

Hi Browniesmum. My DD was dx at around the same age.
At 15 months she wouldn't bear any weight on her legs at all. She is now 20 months and walking fairly well.
We were advised to get some supportive shoes but can't find any small enough for her tiny feet, so she has managed this with just prewalkers.

So she went straight from not. Weight bearing to walking within 5 months, that's really great and really encouraging, thanks.

Do you have other problems like clumsiness etc? My son had an MRI a few weeks ago to check his brain from abnormalities, it came back normal but with a bit of fuzziness, apparently linked to cerebral palsy but nothing too obvious to make a diagnosis! They'll check again when his brain is more developed I guess.

Maybe il get him some piedro boots. Does your daughter attend physio sessions?

Yes. My DS was diagnosed at 14 months too. He sat up at about 10 months, but didn't crawl properly until 15 months. He had learned to roll everywhere until then! He has had physiotherapy once a week since Easter until now. He's now 20 months and is just about walking so they are going to discharge him soon.

He has support boots which were provided through the orthotics department at our hospital and they seem to give him stability. He can now stand independently not holding on to anything and will walk across a room independently although he still prefers to crawl everywhere.

He stumbles a lot when walking and is far happier holding on to my hand just for that bit of support. It's hard when you see other children his age running about and climbing everywhere. I always feel sorry for DS because in many ways he's still seen by others as a baby rather than a toddler and doesn't get to experience things in the same way as other children his age. We do try and treat him according to his age and he does get to do most things his older brother does but it does make things harder. We take him swimming a lot because it's good for building up their strength.

It's been a tough year for him but I do feel like we are finally getting there. He's been very frustrated with his body not keeping up with his expectations so hopefully now we're on the homestretch.

I'm going to spring you right up a few years!!

My dd1 has hypermobility. She's now 13.

She walked at 18 months but had probs with her ankles with that, and lots of "growing pains" in her hips, knees, elbows, and found PE at school pretty hard.

Now she's in her year's girls football team, swims twice a week and runs, and plays badminton with her friends. She still can't wear high heels at all (ankles are still her stumbling block) but otherwise it's been fine. Especially as in flats she's the as e height as me!

We liaised a lot with nursery then school about suitable activities (restricting some gymnastics stuff). But building up her muscle stamina in running and swimming has really helped (though we were told no breaststroke to protect her hips) and she's a tall, gorgeous girl now.

Ah well that's so promising weegiemum! I do worry about the long term effect hypermobility has but I guess it's not all bad! :-)

I just can't see him walking in the next few months at all but hey, let's wait and see. We've had numerous other problems alongside this one, global developmental delay, he doesn't talk yet and has mild ventriculomegaly linked to learning delays.

It's been such a struggle from the start and am hoping it will just become easy one day.was just wondering whether they get treated any different by schools etc? Will they struggle or be bullied because of this?

I'm hoping to get him into nursery in the next few months and am worried about his falling over and hurting himself often as the ratio of carers to toddlers is about 1:4. Not the usual 1:1 attention I can give him. Other toddlers his age are completely independent but my son needs lots more attention.

I would take him swimming more but he's such a poorly baby and always seems to have a cold. :-(

Dc are now in their teens: neither was diagnosed until age 8, when they were already in severe pain from years of untreated issues, so you are starting from a much better position there.

Dd walked at 19 months, ds at 15 (?).

Ds has been the least affected- only a short spate of general pain and mobility issues round age 8-9, and some more long lasting difficulties with holding pens etc. He is bendier though, and has also been the one affected by clumsiness (we have suspected dyspraxia, as he is also quite unorganised, but no formal diagnosis).

Dd has had a rough time of it, including severe mobility issues and chronic pain during the pre-teen/early teen growth spurt. She is a lot better now (at 16) though she is on regular pain medication. Drama and dancing have been good for her in strengthening her joints and keeping active. She has also had a lot more illnesses than other children we know and always seemed more fragile somehow. But not clumsy: she moves like a dancer. Lots of falls, though, in early childhood, and we have needed to be aware that she couldn't necessarily do what other children could.

Neither of them has had any other developmental delays.

My dd was diagnosed at 9 months by her physio as she was very weak on her ankles, bendy all over and thumbs were still tucked into her palms at 7 months (hence hv referral). The worse thing I did was go on the Internet! I was convinced she would end up in chronic pain in a wheelchair. Whilst sadly this is true for some the fast majority are fine. Dd did crawl and walk a bit later than 'normal' and still often trips over her own feet. You can see she's bendy just in the way she moves her body but she doesn't complain of pain at all, and loves swimming and dancing. Her fingers have now come away from her palm. She's 3.5 years now. 6 year old dc is hypermoblie in his hands which has caused him lots of problems regarding pencil control, doing up zips and buttons etc, but an ot really helped him learn these skills and school have been supportive. Try not to worry.