A year ago now, when he was 5, I mentioned to the Doctor that something wasn't quite right with my son's feet, half expecting him to lecture me on the pros and cons of having the correct fitted footwear. But to my shock he referred us to a specialist at the hospital as he didn't think they were quite right either! The specialist confirmed there was a problem, he had a condition called
Pes cavus but informed us that there would be an underlying cause, it's just a matter of finding out what that was. A MRI scan followed to see if he had a spinal tumour or a deformity but he was given the all clear. This has been a very scary time for us all, as you can imagine.
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casts |
However, he would need immediate surgery on his feet, due to lack of muscle formation and an overly taut tendon underneath his foot. The high arches in his feet would just continue to get worse, they already seemed to curl right up. After much anguished thought, discussion with Doctors and internet research (which didn't have many answers) the surgery went ahead in the spring. They also took a biopsy from his calf to test for the most common causes of pes cavus.
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biopsy |
After three weeks of hobbling around, the casts came off and for the first time we could see the scars left by the surgery. Above is the biopsy, these photographs were taken immediately after the casts were removed, before washing, so the redness on his skin is from the surgery.
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left foot |
This is the bottom of his feet, above is the left foot and below the right foot, as you can see from the photographs his feet still curl up especially the left one, poor little man has been in a lot of pain too.
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right foot |
The Doctors seemed very happy with the results, but advised us that he would need many more surgeries in the future. The biopsy was inconclusive, so we still do not know what has caused this problem, the specialist remains convinced that there is an underlying cause and is talking about the possibility of further tests and electrical testing of the muscles some time when he is older.
The last few months have been very stressful, my son has had to get used to walking a slightly different way on his "new" feet and he has had a lot of pain when he over exerts himself. Something the Doctor said troubles me too, he said "make sure he plays football, climbs trees and has fun now..." is it just his way of saying he is fit to go and live life to the fullest or that he may not be able to do these things in the future...? It has had me wondering and worrying every day since the operation.
I just wish we had some idea of what we are facing, not knowing is awful, so I have written this post not only to let you in on our lives but also in the hope that we could connect with other parents who may have already been through or are now going through similar problems, so that we can share experiences as we found so little information on the internet regarding this problem.