Hypermobility Experiences - Not Walking Age 2

[Rhubarblin]

My little girl is 2 years 4 months / 28 months. Her rolling, sitting, crawling, pulling up milestones weren't delayed. After not walking by age 2 she was referred to paediatrics and has since been diagnosed with hypermobility. She has all the expected referrals in place and uses a walking frame. She also has femoral anteversion and tibial torsion. There's no other concerns around her development. She's a wonderful little girl with a brilliant personality!

I'm curious as when other children with hm began to walk if they were over 2? We'd love to see her walk independently!

Many thanks

Hi! I had two late walkers with hypermobility. Both did start some sort of walking fairly soon after 2 I think but I have shocking recall and once sinister things were ruled out, I was very relaxed about the whole thing and not paying much heed to dates! But I would have counted walking with a frame as walking!

One had a very marked stooped sitting position which also resolved with time.

Anyway, they did crack walking sometime in the 2s! That's not much help, is it? One is 6 and the other 4. One is still visibly bendy - his thumb looks v odd when he writes, and writing doesn't come easy to him. It hurts his hand, although he can do lego for hours. They both mispronounce a few words. One dribbled for a long time! I bought a lot of those cool bandana bibs!

But otherwise, nothing lasting or that significantly holds them back.

Hello Legoroses, that is helpful as they did walk! It would be lovely for her to walk independently. She sits with the curved back too.

Hi Rhubarblin, I’m 48 and am the grownup version of your daughter. I learned to walk by pulling myself up on the dog. (Very patient German Shepherd.) I didn’t try until I was well on the way until three, because people had dismissed my immobility as brain damage from being a premature baby. (It was early 1970’s and they had no clue what they were doing then.) I would recommend that you continue working on strengthening all her supportive muscles and encourage her to do so through her active growth years and beyond. (Pilates & Strength & Conditioning exercises specific to her needs, and avoiding too much stretching of ligaments like yoga, etc). Make sure she has orthotic devices to correct her gait and well-fitting shoes. Don’t hold your breath that schools will understand her issues when it comes to sport, etc... they’re a bit busy. Some are better than others. I am certain that with the advances they have today compared to the 70’s, she will grow up to lead a relatively normal life. (I was a singer, then a flight attendant and now have three teenagers - carried twins to term, etc.) My wonky leg is significantly shorter than the other as it was badly broken at birth (yanking me out). It doesn’t sit in the hip socket properly and that causes pain at times, but my mobility is actually relatively normal. I’ll never run a marathon, but why would you?
I hope that this helps you feel more positive for your little girl’s future.

Hello justilou1, thank you very much for your reply, firstly it's very encouraging to know you eventually walked as a toddler and have had a 'normal' life. Your dog sounds amazing, I'm not sure the cat would be up for helping like that Thanks for the fab tips for longer term, we'll do whatever we can to support her. I'm not too worried about her being sporty, I was a scrawny, uncoordinated child who sucked at PE. We've discovered she has a relative who didn't walk until 4, now aged about 70 so there wasn't any diagnosis at the time but was fine in the longer term. She has ortho AFO style shoes, so very supportive and do help. We're just praying for that independent walking now!

I know you have a lot ahead of you. I was always a "Klutz" and have only recently been diagnosed with Ehler's Danlos Hypermobility Syndrome. Doesn't really mean much more to me now than that there was a medical reason for my talent for tripping over my own feet and inability to wear high heels. I kill it at yoga! Your little girl sounds like she has a great mum who is giving her every chance to have an independent life. I know you will always worry about her (I have passed my genes on and have three bendy kids) it's entirely normal and you should be proud of yourself for being such a loving mum.

I'm glad it's not been too bad for you as I know EDHS can be very nasty for some people Thank you for your kind words, I don't think we ever stop worrying! They've said I'm hypermobile too, so explains my poor coordination

I just wanted to update this thread in case someone else comes across it after frantic Googling as I once found myself doing. My daughter is now walking pretty much all the time independently aged > 2 years 8 months / 32 months! It's been a long wait as she pulled up at 11 months, took 2 steps at 21 months but it's taken until now for her to fully get going. There's no other concerns around her other areas of development.