Scleroderma – James’ Story
Please take some time to look at this great website that is all about juvenile scleroderma. You can read other childrens stories and find out even more infomation about the organization I am supporting through sixdegrees.org.
After speaking with my Doctor, I have found out that some areas of James’ bones have rings on them, which she said means that they have stopped growing in places. The upper arm and forearm were the main places she saw this. She did ask when the MRI was done to focus on the thumb area as that was the worst effected area, but they didn’t have time to do that as they already took 2 hours to do the rest of the arm. The x-rays I am told were just to have some more images to look at and for study. We go back to see her in July where she can speak to me in person about it.
Has anyone else had bones stop grow? Will they grow anymore or is that it? Will James have a smaller right arm than left?
He is still using his right hand to write at school and plays on the play equipment at lunch. He still has full use of his hand, but it is smaller than the left one. Please let me know if anyone else has had results like these and let me know of the progress.
Thank you
Yesterday, James had his MRI. It was a long day and the MRI took longer than they told me. I think the waiting is the worst. Just sitting in a hospital cafe, thinking what could go wrong, what is happening, is he OK. After about 2 1/2 hours James came back to the ward. I was waiting for him. The nurse then told me that after he was given the OK to leave the ward we had to go down to radiology for x-rays. This worried me, after 2 hours of a MRI they need to do x-rays.
James was upset, just coming out of the anesthetic he was groggy, thirsty and hungry. He was sick for a couple of hours and the Dr gave him something to settle his tummy he soon picked up and kept down a sandwich and some water and we went off to get x-rays. They took 6 of them. The shoulder, upper arm, lower arm, wrist, hand and thumb.
I hope to hear from the Dr today or tomorrow to hear about the results. Hopefully I’m just worrying about nothing.
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