Finally physio for Erin, but is it to little too late?

Written by Emma. Posted in DDH, Erin and DDH

Erin at four years old still doesn’t walk long distances, she has weak joints.  Joints that bend too much and therefore her little body struggles daily.   She has hypermobility.  She has had operations for ddh and been bound from belly button to ankles by a fibreglass casing.  Therefore with these two conditions it has always been known that her muscles would take time to catch up.

Now that we are 7 months away from starting school and 20 months post spica I have major concerns about the fact that she doesn’t seem to be catching up.  She is falling over again and her little legs are littered with bruises of different colours.  She complains of pain and generally aches.  Determined for answers I arranged yet another appointment with our GP.

Today I feel I was actually listened to.  I explained how Erin complains, how she struggles and how I worry.  I explained her history and Erin was given a full check over.  However this time the GP did not just think hips, she took time to really study Erin before asking her to remove her shoes and socks.  She watched her gait.  I have mentioned before about her turned in feet. I was told it would correct itself. Everyone focussing on a dislocated hip. Yet it was that bendy little foot that first had me going to the doctors, that and the limp. After all her spica treatment I was reassured all would be well. We knew that her late diagnosis of ddh had made this journey a long and unknown road.  I have never understood why physio treatment is not standard for older toddlers who learnt to walk on a dislocated hip.  I watch Erin and know her gait is not right.  She doesn’t run, she sort of gallops, she is clumsy and she knocks into things.

Today I went looking for answers and those answers are that she has now finally been referred for physio.  I was asked why she had not been treated for her feet.  I was told she needed to be seen, that her feet are bending and curving too much that maybe correcting her hip has made the intoeing worse.  Her feet are too flat and once again I feel the hurt that in the past no one has listened to me.  I know that intoeing and feet problems are associated with ddh they can be packaging issues, caused by how she grew in my womb.  I still feel guilt that my body let her down and caused these issues and then she was let down again as it all went undiagnosed.

The GP called in another doctor – one that knows Erin and together they said this new development needs treatment.  Her feet seem to be causing some of her problems.  It hasn’t gone away now that the hip is secure in its man made socket.  And so I await another letter addressed to Miss Erin bearing the hospital franking machine marks.

It will be five months until her next hip xrays.  I yet again feel I am just waiting.  Tonight again I have shed tears for my awesome girl.

hope

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Comments (6)

  • helloitsgemma

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    Emma, hang in there. You are both fighters, both inspirational.

    Reply

  • Fi Star-Stone

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    So unfair.

    Thinking of you and know you’ll fight through this as always.

    Reply

  • Molly

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    I’m surprised she hasn’t had physio yet, but it’s great that finally she’ll get the treatment she needs. Stop feeling guilty – non of this is your fault. Hopefully with physio and perhaps some insoles then Erin will fly. As a mum of a little girl who also has Hypermobility my main complaint is the postcode lottery of care. In Berkshire we had to wait nearly 6 months for a physio referral whilst in Devon it has been a matter of days. Doesn’t seem fair. xx. (Sorry for any typos – am on phone!)

    Reply

    • Emma

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      I’m still surprised Molly considering all she has been through and diagnosed with!

      Reply

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