Hyper mobility Syndrome

[MummyNellie123]

Hi my son saw a Consultant because he wasn't walking- he is 18 months, and he has been diagnosed with hyper mobility syndrome.

we weren't given any follow up, any support information, any forwarding referral or any advice as to what to do aside....'he will catch up in his own time...by 2 he should be walking'

Is there anyone here whose DC have this condition who would be able to tell me what I can do? shall I arrange a physio session? shall I get a second opinion?

I am very disappointed....it was my DH who took him, I would have make it a point to get the info there and then but my DH as lovely as he is cant negotiate his way/talk his way into/out of anything

I have no advice for you really but wantedto say hi.

My Dd3 has hypermobility syndrome, it effects all her joints. She wasnt late to walk but has poor co ordination and balance and used to fall alot.

She has orthotics now which have helped alot. When she was little she always wore boots to help support her ankles because I could see they were rolling over and our brilliant independent shoe shop owner said she would be better in boots.

She has other issues as well and has had physio and Occupational therapy on and off since she was 8 which was when she was first found to be hypermobile!!

There are definitely other people on here with children with the same dx.

Good luck

Hiya

My daughter was confirmed to have Hypotonia (low muscle tone) and hypermobility (extra flexible joints) at 10 months old as she was delayed with reaching her physical milestones.

She had monthly physio sessions and exercises to do at home. We was given a 'bumbo' seat to help support her with sitting and walking shoes or boots to support her ankles when she finally learned to walk just before 19 months. She was very wobbly after that and was constantly falling over but by the age of 2 she was walking confidently.

She had lot's of tests done, and we have never had a diagnosis to date as to what has caused her Hypotonia/Hypermobility.

She is 6 now, and physically fine, runs, skips and jumps etc but still struggles with climbing frames, bikes and has fine motor control issues which she is going to see an Occupational Therapist for.

She is also prone to falling over a lot, she often complains about her legs feeling tired and today told me that they feel wobbly.

I am not sure what advice to give I'm afraid but just wanted to share my story with you.

I don't think it would do any harm to get a second opinion and ask about a possible referral to Physio.

I'll watch this thread with interest. Good Luck :)

We had the same problem with ds1, diagnosed as having hypermobile joints but given no further support except a follow up app in 6mths! It was assumed he would walk in his own time (in truth, the ortho didn't even see him put his full weight on his feet, if she had she'd have noticed the severe pronation in his ankles). Anyway, we took matters into our own hands. We got him boots to help support his ankles (babybotte are a good make, even kickers. We had a few diff ones but can't remember brands off the top of my head). This helped immensely cos he could stand without his ankles rolling in (not unaided mind you). We took him swimming as often as possible, great for strengthening the joints, even just splashing about in the water. Toddler trampolines are also excellent for strengthening, Ds used to bounce on his knees at first, then standing up without leaving the trampoline until eventually it was full blown jumping.
Does your Ds cruise at all? If he does and you have a low windowsill or shelf I'd recommend putting a row of something ds likes (we used to use blueberries or sometimes choc buttons) along it to encourage him to walk up and down along the windowsill.
We noticed a big difference in the strength and stability of ds's joints doing all of the above which helped him on his way to walking. He ended up not walking completely unaided until he was 2yrs 2mths but for months before that he was happy to walk holding one hand completely balanced and without difficulty. So I think those last months were a confidence issue rather than a stability issue because he was so used to not being able to walk himself iykwim.

Hope that helps, its so frustrating when HCPs aren't giving you the help you need. I'll try and remember the other brands of shoes we used for our ds and repost tomorrow sometime.

P.s. I should add he's now 4.5 and runs and jumps as well as anyone his age. The only things he has difficulty with are climbing certain pieces of play equipment (not all) and he still can't pedal a bike. It was his preschool sports day today and he took part with gusto (he's prob one of the fastest in his class) [proud mummy emoticon]

Me again (you'll be getting sick of me but I'm suffering from insomnia tonight so mumsnet is my friend).

Had a wee think about boots brands we used and remembered a few. As mentioned, Babybotte are excellent and we also really liked Garvalin and Froddo shoes. You could prob get them in independent shoe shops or if you don't want to pay through the nose, get DS measured properly and then scour Amazon for his size in each brand. We did this and always managed to get him boots for a fraction of the retail price (they can be very pricey otherwise).

Ricosta and Ecco also make nice boots they are pricey but you can sometimes get them in the sales or on Zavari.

Dd3 has hypotonia as well, her physical issues are related to her autism.