Hypermobility - now 3.5

[curiousgeorgie]

My DD didn't crawl or do anything until almost 2, she is extremely flexible and hyper sensitive to textures.

She was diagnosed with hypermobility and had Physio and saw a consultant until about 8 months ago.

She walks (but like bambi, and very very slowly!) but can't run, jump, climb, do steps or stairs, ride a scooter or anything that other children her age seem to have been doing for ages.

She's at nursery and watching her in the playground today, her delay is devastatingly obvious and she's like a young toddler in comparison.

Should I go back to our consultant or is this just how it's going to be until she catches up?? (Or until the differences don't seem so obvious.)

if it were me, I'd go back and ask for more physio. It would be really good if you could get a physio to see her at nursery so they could give them a program to work on the skills she needs to keep her in with her peers. Does she get any extra support at nursery?

The nursery are great, and help her with the toilet step, being in the playground etc, but it's part of a primary school and she does get knocked over quite a lot.

Apparently the wait for more Physio is August at the earliest

I can't get her back in to see the consultant until July..

I wonder if its worth just going private? I really think she's struggling. She's limping around saying her legs hurt.

have you spoken to the consultant's secretary? Sometimes they'll call you if there's a cancellation or might get you in quicker if she's in pain. I'm sure it's no consolation but you're not on your own with the waiting lists, it really is rubbish and there's nothing (apart from funds ) to stop you going private while you wait to be seen on the nhs. Does she have supportive boots, sometimes that can help?

Hi curiousgeorge - we are in a very similar situation with our 4yo and ended up paying to see the necessary consultants privately (once for podiatrist and once for gastro - ran out of cash before we got to physio!) to get the necessary diagnosis and then taken that with us back into the NHS so when our long-awaited appointment did finally come up (we waited 15 months in one case), we had what we needed to get the right treatment. This worked well for us and I can recommend it but as others have said, it's funds-dependent. Our thinking was that early intervention improves success rates with things like podiatry and physio and with our LO starting school in Sept, we wanted to try to make sure things were in place to help support him as much as possible. Really sympathise - it's a crap situation and we're still waiting for that physio appointment. Apparently, the one in our area is off work with stress-related illness, which I can well believe, judging by his/her workload... Depressing really...

I think you might want to ask for a paediatric rheumatologist referral. How does your daughter sleep? My son is hypermobile - although barrels around like a crazy thing, and goes through cycles of extreme exhaustion and then just-about-ok. He has limited physio input. I recently spoke with a health visitor with experience who agreed that a rheumatologist is the best person to start with. If sleep is a problem, then a sleep study clinic. just keep pushing. good luck! x

Has the physio given you exercises to do as often as possible? We only saw ours once for DS1, but she gave such a comprehensive list of (simple) exercises, on top of a referral for orthotics, that we felt quite confident working with him ourselves and we did see progress.

Orthotics really helped Dd3, she used to fall all the time but since having them she hardly ever does now.

Physio referred her for a gait analysis with a podiatrist who then prescribed orthotics.

She is hypermobile in all her joints and has low tone.