Discussions By Condition: I cannot get a diagnosis.

3 year old child lower limb nerve problems

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: cameron1
  • November 9, 2006
  • 08:30 AM

Our son is now three years old and was born with talipes. He had 3 correction operations before they decided there may be something else contributing to his inability to walk and his lower leg weakness.
He has had an MRI scan which came back clear for major nerve damage, he has also been checked for spina bifida and sacral agenesis.
He has very weak muscles in his legs but is able to walk when assisted.
It seems as though because he is not in any pain and just gets on with it that they are happy to let him do so but I am not!
The doctors are saying that they cannot understand how he can be so weak in his legs but so strong in his upper body with no other problems at all (toileting etc.. all fine).
He has absent reflexes in his legs and is also double jointed and very flexible.
They seem to think there is a link somewhere between this and his problems but cannot put their finger on it.
They have now said that they are sure he has a nerve problem but they cannot give me a diagnosis and all they can do is correct his clubfoot and with physio, try and make walking as easy as possible but have said he will always struggle with his walking etc..
I am sure if we could actually work out what was causing these problems with his legs then maybe we could start to treat it or at least manage it effectively.
He is now 3 and desperate to walk so any help or ideas would be really appreciated x
Does anyone know of any tests etc.. that we should be pushing for??

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