StempleBunny
02-27-2008, 12:08 AM
I found this site with a search and was so happy! I have been a member for just over an hour now and have been reading the threads for adults.
I was born with spina bifida occulta, but didn't know it for many years. The doctor simply told my mother that she had almost given birth to a "monstrosity". She didn't know what he meant, nor did I. I wasn't finally diagnosed until I was in my late 30's. Having bowel and bladder control issues my entire life, I had switched to a new urologist closer to home. At the time of the appointment I was ill with kidney issues and didn't even realize it. An IVP showed the spina bifida ... that's how I found out.
I have heard there is a heredity factor in neural tube defects and I have heard that it's dietary. Maybe someday we will have the whole story.
My firstborn son had myelomeningocele. They whisked him off to Children's Hospital and I didn't get to see him, had no idea what was going on. My husband and mother chose not to tell me how bad it was. Two weeks later, I was allowed to see him. They had repaired his back, but he had developed hydrocephalus. I passed out from the shock of seeing him with that huge bulging forehead. Somebody should have let me know in advance.
Long story shorter: the doctors lied, told me he would be normal mentally, but might not be able to go to college, would learn to walk with braces and crutches, and all sorts of positive things. In reality, he was profoundly retarded, never learned to speak, chew, take a bottle, sit up, or do anything at all. He was frequently ill and never did well. He was on Phenobarb and Dilantin to control seizures. In the end, I lost him to a simple cold virus that developed into pneumonia when he was only 4 years old.
I have since had 2 other sons and a daughter who are fine ... no signs of neural tube defects of any kind. They are all adults now.
I will be 60 next month and am hoping still to find some doctor who can help with bowel and bladder control problems.
I wish all of you good health and success in working with your own issues or those of your loved ones or friends.
I was born with spina bifida occulta, but didn't know it for many years. The doctor simply told my mother that she had almost given birth to a "monstrosity". She didn't know what he meant, nor did I. I wasn't finally diagnosed until I was in my late 30's. Having bowel and bladder control issues my entire life, I had switched to a new urologist closer to home. At the time of the appointment I was ill with kidney issues and didn't even realize it. An IVP showed the spina bifida ... that's how I found out.
I have heard there is a heredity factor in neural tube defects and I have heard that it's dietary. Maybe someday we will have the whole story.
My firstborn son had myelomeningocele. They whisked him off to Children's Hospital and I didn't get to see him, had no idea what was going on. My husband and mother chose not to tell me how bad it was. Two weeks later, I was allowed to see him. They had repaired his back, but he had developed hydrocephalus. I passed out from the shock of seeing him with that huge bulging forehead. Somebody should have let me know in advance.
Long story shorter: the doctors lied, told me he would be normal mentally, but might not be able to go to college, would learn to walk with braces and crutches, and all sorts of positive things. In reality, he was profoundly retarded, never learned to speak, chew, take a bottle, sit up, or do anything at all. He was frequently ill and never did well. He was on Phenobarb and Dilantin to control seizures. In the end, I lost him to a simple cold virus that developed into pneumonia when he was only 4 years old.
I have since had 2 other sons and a daughter who are fine ... no signs of neural tube defects of any kind. They are all adults now.
I will be 60 next month and am hoping still to find some doctor who can help with bowel and bladder control problems.
I wish all of you good health and success in working with your own issues or those of your loved ones or friends.