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Hello Nancy I have a 3 year old granddaughter with saltwasting cah. She went into adrenal crises at 13 months and this is how she was diagnosed. This is when we lived in Cincinnati Ohio and while she was getting a blood transfusion her IV infiltrated and she almost lost her right leg and they too wanted to remove it due to muscle and nerve damage. She has some ugly scars on both sides of her leg from the fastioctomy, but she is walking and running and doing fine. I never have run into anyone else who had this problem. On one hand I am glad the hospital saved her life ...but on the other they just did not watch her leg closely enough and for this I am angry. We now live in Virgina Beach and I know down the road there will be more surgeries and skin grafts ect. to make this leg look better, but in the long run it will all work out I suppose. What part of WV? I use to live in Huntington WV and Baltimore. You are so lucky to be close to John Hopkins , it is the best. Just wanted to let you know that the leg does work for our granddaughter. We have custody of her since her Mother passed away with cancer when she was 5 months. My son takes an active role in her life .. but not as much as I would like. He just can't get on track after the loss of his wife. Good luck with your babies leg and if you have any questions feel free to email me. Sincerely Cherry
