Scoliosis and NF1
Hi,
My son Oliver has Neurofibromatosis Type 1 (NF1). He is 6 years old. He was just recently diagnosed with scoliosis (T6-T10=31 degrees). It has been 16 days since we found out and I cry everyday. I think today the shock is finally starting to lessen although the tears still fall. I'm doing my best to research and find the best treatment for my son. Dr. Todd Lincoln from Kaiser Oakland, California, is his current doctor. He doesn't think a brace will help but we still asked for one just in case it helps to slow down the progression. Oliver will be wearing a Boston brace. We are waiting to get a second opinion from Shriner's in Sacramento, California (thank you MariaF for letting us know about Janet). Dr. Lincoln doesn't think Oliver will be a good candidate for VBS because he has NF1. NF1 bones are weaker and doesn't heal well.
For those with experience with VBS, what are the pros/cons that you've noticed? A friend who's daughter had VBS said that her curve is now shifting to the opposite side of the staples, past the midline. Is this a common complication?
Any advice will be greatly appreciated.
Sincerely,
Karla
Hi,
My son Oliver has Neurofibromatosis Type 1 (NF1). He is 6 years old. He was just recently diagnosed with scoliosis (T6-T10=31 degrees). It has been 16 days since we found out and I cry everyday. I think today the shock is finally starting to lessen although the tears still fall. I'm doing my best to research and find the best treatment for my son. Dr. Todd Lincoln from Kaiser Oakland, California, is his current doctor. He doesn't think a brace will help but we still asked for one just in case it helps to slow down the progression. Oliver will be wearing a Boston brace. We are waiting to get a second opinion from Shriner's in Sacramento, California (thank you MariaF for letting us know about Janet). Dr. Lincoln doesn't think Oliver will be a good candidate for VBS because he has NF1. NF1 bones are weaker and doesn't heal well.
For those with experience with VBS, what are the pros/cons that you've noticed? A friend who's daughter had VBS said that her curve is now shifting to the opposite side of the staples, past the midline. Is this a common complication?
Any advice will be greatly appreciated.
Sincerely,
Karla
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