Hypermobility/Walking/special boots

[JudysMummy1972]

Hi. Anyone else here got a child with hypermobility?
My AD had hip dysplasia and wore a harness thingy for a while at as a baby. We adopted her at 11 months and it was obvious she hadn't been encouraged to sit up let alone crawl. (She was like a baby in all ways.
4 months on she does both and stands up aided. Now the rate of progress has slowed down on muscle strengthening in the legs and ankles. I'm looking for exercises that we can practice for building muscle in the kegs, core and hips.
She's going to an orthoptist next month and may get the special boots to help her ankles. Anyone got experience of these?

[IamnotaspoonIamafork]

Hello, my LO had leg weakness (but due to CP) and we had good support from the community physical disabilities team, and the community physiotherapist. Both of them visited us at home regularly after placement, and the phyio designed a programme we could do every day (LO was 2). I hesitate to suggest exercises that might be right or wrong for your child, but definitely do get them to design something for your AD, and get your GP or peadiatrician to make sure the community services support you.

Generally, scrambling (perhaps over cushions on the floor), and lots of songs and games that involve a lot of standing up and sitting down again, can be good for building leg strength. Blowing bubbles up high (getting them to reach up) then blowing them down low (getting them to get down on the floor to pop them) can be good too. Hope your orthotist appointment goes well

[Stampingduck]

My little one has been wearing piedro boots for a few months now. She has hyper mobility in all her joints and her ankles are pretty bad. The boots do help with stability, but not her gait and now we aren't sure if they're the best thing for her so back at the orthotist soon to reevaluate. As for leg strengthening exercises we were advised things like soft play are great, and when at home just put the sofa cushions on the floor and climb all over them.

[Stampingduck]

Should add as well at Physio the leg exercises are mostly standing to pop bubbles (you can support at the hips if needed), standing to sitting on a stool, gradually lowering the height and keeping the hands busy so it's all in the legs, lots of stair climbing, stepping into hoops and bending to pick them up and over. If you give lots of opportunities for active play your little one should come on great :)

[fasparent]

As suggested by " I am not a spoon " community disability team is the way forward.
We have Specialist Physiotherapist programme in place supported by home play therapist, special play therapy with other children and mums once a week, speech and dietition therapist in place, also sensory room sessions. Though I think for some its a post code lottery, also a wait we had too wait 6 months for referral appointment.

[Stampingduck]

Fasparent I have support envy. We don't get anything like that here, but I wonder if my little ones needs aren't as great.

[Cabawill]

My DD is now 4 and has lower limb hypermobility. She had to wear Piedro boots for 2 years but has now been discharged. Her strength has improved so much in her legs since we bought our trampoline- she loves it and it's not like having to do exercises. She does fall over a lot, especially when tired though

[fasparent]

Stampingduck must remember its not about greatest needs, rather development and early interventions, which will lesson or dispense with possible future unforeseen secondary issues or problems later in life, such interventions will help any baby/child with or without issues. Adopted or not. And help with further support and health referrals if needed.

Most important, as with some of our children, have dispensed with the
stigma some conditions come with, although they are diagnosed eventually are able too manage, go too work, get a job, buy a car have their own place, without befits etc. Though lots of children with invisible disability's are not as fortunate sadly.

[IamnotaspoonIamafork]

Cabawill that's nice to read about your DD! Can I ask what you do about wellies? LO cannot walk in them at all but I struggle to find a waterproof alternative... If you've cracked this one, I would love to know!

[Stampingduck]

I'm not sure I understand what you mean, fasoarent, sorry! I just meant I wish my dd had more support in place but sadly the professionals says she is too able for most interventions, despite needing them in my opinion.

[fasparent]

Agree with you stampingduck, Most parents know their children best, should not have too fight constantly for help and support, my kids with visible disability's mostly get support they need but not always, still have too fight, others with none visible issues/problems is a continual fight too access help and support.
Vital window of opportunity is age 0 too 7 hence the need, there is a urgent need, too address support of all children leaving care, in the way of a statutory support plan until age 18. rather than by voluntary application.
Funds such as Pupil premium + £1900 pa (£200m a year) should moved into LA NHS control too facilitate a Aftercare Health care plan for all such children.
See (google) Gareth Marr Adoption Train, or Adoption social too see some projects of a similar nature by other LA's which are working.
Can join in strength in numbers will advocate change in time.