Posted: Fri Oct 16, 2009 11:50 am
Post subject: Chondrodysplasia Punctate
Has any1 experience this before...
Amelia was born with one leg shorter than the other.
We have been to oxford hospital where they are now doing test about it. They have said they should be able to correct the leg by operation if it came to it and lenghten the bone but they also said it may be genetic which i am really upset as it may happen to all my kids in the future.
I am so upset.
Posted: Sat May 01, 2010 1:08 pm
sorry noones replied to ur post ive onyl just seen it normal.
its normal to feel upset but just try and concentrate on amelia hopefulyl an operation will work and there will be no further problems.
can the doctors tell u for certsain if its genetic or not?
Posted: Tue Feb 08, 2011 9:17 pm
Hope I can help a little here with this one. You can go for genetic counselling, and also you can have tests done to find out if this is genetic. You will need to push for both but it will give you answers. Manchester did genetic testing (simple blood test) on all of my family to find out about my achondraplaysia (can never spell it right!!) As for the surgery the brace they will put on is called a fixator they dont use callipers anymore. If you want me to explain it a bit more to you I can pm you to explain about the fixator.
Jules x x x
Posted: Wed Feb 09, 2011 10:08 am
It seems i have come such a long way since my first post especially as my daughter is now coming up to 18 months
She is currently wearing a shoe raise and she is doing great.
We have had genetic testing done and it has all come back it is just a one off and all the blood tests have shown it is nothing due to me or her dad which was defiantly a relieve
Julies... do you know anyone who has been through having a fixator or is it yourself that has been through it??
Amelia is under the care of Oxford and they are planning to do her operation when she is 4. They have been fantastic
Posted: Wed Feb 09, 2011 10:15 am
Hi, Im having one next year, I was offered one when I was 24 but turned it down (stupid now), They arn't as scary as people think they are and kids adapt so quickly to knew situations and find solutions to get around and do the things they want. They have probably explained to you how it works so at least your not going in with your eyes closed. When I was six I was in plaster from chest to ankles with a bar across, I do remember it but not in a bad way, espsecialy since I had a scooter bulit for me, make it fun when your lo has it done give it a name tie bows on it (in safe places) x x