My son, Matthew is 5 years old. He has been casted since the age of one. He also has Ehlers- Danlos Syndrome. Since Nov. 2006 Matt has been treated at Shriners in Erie. In Jan 08, his doctor relocated to Rochester, NY, which happened to be my home town until Jan. 07. Since, Jan. 08 Matt has been in the brace. About 4 weeks ago we met with a doctor from Philadelphia, who was at Erie that day. He informed us that Matts curve was getting worse and that he probably needed surgery (VEPTR) within the next year. I was advised to go to Philadelphia to meet the doctors and to see the facility. Meanwhile, they put him in a new cast at that time.
Unfortunately, I don't know what happened to the cast, but it was huge!! I called, and scheduled him for a brace fitting. I also called my old doctor up in Rochester, NY for a second opinion.
He got his new brace last week and we me with the doctor in Rochester on Monday of this week.
After taking some new xrays, it showed that his curve has gotten worse and now has the "S" curve. He agreed with the fact that he needs surgery in the near future. Not sure if it would be the Veptr or growing rods.
In the mean time, we go back to Rochester next week to get a new cast put on and to see if we can hold he for a while longer. He is also doing additional testing - Pulmonary Funtion Test and a CT.
I wasn't really expected to hear this new. I new that he would definitely need rods when he was older, but not this soon.
Trying to get some questions together to ask the doctor next week. Right now, I'm totally confused and don't know what to even ask him. Any information, would be greatly appreciated.
Thanks,
Sue & Matt
Unfortunately, I don't know what happened to the cast, but it was huge!! I called, and scheduled him for a brace fitting. I also called my old doctor up in Rochester, NY for a second opinion.
He got his new brace last week and we me with the doctor in Rochester on Monday of this week.
After taking some new xrays, it showed that his curve has gotten worse and now has the "S" curve. He agreed with the fact that he needs surgery in the near future. Not sure if it would be the Veptr or growing rods.
In the mean time, we go back to Rochester next week to get a new cast put on and to see if we can hold he for a while longer. He is also doing additional testing - Pulmonary Funtion Test and a CT.
I wasn't really expected to hear this new. I new that he would definitely need rods when he was older, but not this soon.
Trying to get some questions together to ask the doctor next week. Right now, I'm totally confused and don't know what to even ask him. Any information, would be greatly appreciated.
Thanks,
Sue & Matt
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