My daughter was first diagnosed at the age of four, and she is now fifteen years old. At first we were told it was nothing to worry about, just growing pains. But then her foot started to scar and we knew it was more than 'just growing pains'. For about a year we were being told this, until they decided to get someone from dermatology to see her and he mentioned it could be scleroderma.
We were then referred to Great Ormond Street Hospital in London and my daughter was put on D-Penicillamine but that did not do much. It just caused her to feel unwell all the time. She was then put on Methotrexate; they tried liquid form but she would not drink it. Every drink we put it in she would go off. We then tried tablet form. We crushed it up and put it in food but she would not eat the food. Finally she had to have it injected into her leg, but then that stopped working.
She was then tried on Cyclosporin. That only did so much, so they then combined Methotrexate and Cyclosporin for a while. That was stopped about three years ago, as they said her illness had gone into remission.
Her right leg is badly affected with a lot of scarring and muscle wasting and also the leg is shorter. I am now waiting to see someone as we think it is active again, as her left foot and leg has started to waste and also scar.
It would be nice to find out about other people's experiences, so please do email me.
Email: [email protected]
Story edited 02-10-06 JTD
Story posted 02-25-06 SLE
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