Spina Bifida

Hi M.

I have a sister with Spina Bifida. She is in her late 30's now ad had a very severe case of it. I do know other children with the condition that were not at severely effected that had very normal lives. It is all about getting the right team of doctors and surrounding him with the right people with "can do" attitudes. I am sure today that medical technology is much further advanced than it was when my sister was born and have seen many articles as such.

What are you struggling with at the moment? Did you just find out? Unfrtunately I dont have any connections here as we grew up in Boston and am not tapped into the Nashville medica network.

If I can help be a soundig board for anything please let me know.
kind regards
T.

I do not have a child with spina bifida.

I did search the Yahoo groups and found several groups like spinabifidacentral that might help you to hook up with other parents and gain from their experience and encouragement.

I also saw that one CranioSacral therapist says that that therapy helps patients with spina bifida.

Take care.

Dear M.,
I don't have a child with spina bifida, but through the years I've been a home health peds nurse to several kids with varying degrees of it. From my perspective, I have to consider their universal allergy to latex. Other than that, everyone is different.
I agree with Karen, who suggests looking for support groups. Support groups won't just be good for you, they'll also be good for Sammy. He'll make friends with the other kids in your support groups and potentially know them through adulthood.
Just like any other play group, support group, scouts, etc., if you join one and you don't like it or the people in it, try another! If you try another one and don't like something about the people or the atmosphere, create your own!! By that time, you have an idea of what you are looking for in a peer-support group.
You don't mention any specific issues you're having right now that prompted you to write. What's happening? You might find out that many problems that you may be having with Sammy are unique to his age group, not his diagnosis.
As Theresa says, "It is all about getting the right team of doctors and surrounding him with the right people with 'can do' attitudes". Living in Wilmington, NC, I can tell you that the kids around here all receive their specialty medical care at UNC Chapel Hill Hospital. I see you live in Chapel Hill, so you and Sammy are definitely in the right town!!!
And I agree with Kathy, who says "Love your son and cherish him!"
Keep us posted and good luck!

Dear M.:

I have a nephew who is 32 and he has spina bifida. His parents were told he would be retarded, and would never walk. He is the ninth child in their family and they treated him just like they did the rest of the kids. He went to school, played ball, he walked, he ran, he is totally normal. He took longer by far to walk than his siblings. He walks with a sort of waddle(something like a cowboy saunters). He graduated high school and went to college. He is not retarded at all. He is married now and has a beautiful step daughter who he adores. He can't have children of his own and he may not live as long as his siblings but he is happy and has delt with any physical problems with everything he has. He won't give up because his parents didn't. Love your son and cherish him!