Spina Bifida Support Group
Spina bifida describes birth defects caused by an incomplete closure of one or more vertebral arches of the spine, resulting in malformations of the spinal cord. The spinal membranes and spinal cord may protrude through the absence of vertebral arches (called clefts).
Last week my son's doctor said he was listing him as failure to thrive. He is four years old and is 32inches long, and weighs 27pounds. He actually went for a UTI (2nd in his life) and I asked him about his growth as I was a little concerned but not overly. He gave me some medication to increase his appetite. I don't think he needs it because he eats very well. He has his 3 meals and then 2 snacks, sometimes 3 if he wants it. I never tell him no to food unless we are getting ready to eat anyway. I do limit his junk food intake, but I do this with my other three children as well, so he is not being treated any different. He is cathed 3x per day, takes only fiber for his bowels and I have not given him this medication that the doctor said to give him because. He is not thin. He is proportionally perfect. I don't see what increasing his calorie intake will do other than make him heavier. I don't see how it will make him grow taller to carry the extra weight. The doctor made me feel like such a bad mother, like I don't take care of him. I hope someone can give me some advice. Thanks
deleted_user
The only reason your son will not "thrive" is if you neglect him or don't encourage him to push on. I stopped listening to what my doctors were telling me I could or couldn't do, or how they thought I'd turn out, when I was like 3 yrs old. When I was born in 1976 with Spina Bifida, my doc told my mom I would not live past 2. Then at age 2, he said, "Well, he probably will never walk." After I started trying to walk w/braces and such, he said, "Well, he probably won't be able to walk without help". When I walked out of the doctors office at age 3 on my own, they stopped telling me things like that. Just be positive about everything and keep reassuring both yourself and your son that he can do whatever he sets his mind to, and that will be the case. There will be nothing he can't do! :)
deleted_user
I had a very similar situation when I was born in 1968. The nurses talked my mom into talking with the hospital nuns and they told my mom to just let me go to God. The doctor said she won't live 24 hours, then 48, then she won't make it to be 3 and then it will be a miricle to see her live to 12. At my 12th birthday my mom cried her eyes out. I'm 39 now, I listen to my doctors but I also ask allot of questions, do research and get lots of second opinions when needed. Doctor's are not perfect and they are trained to convience folks to do experimental surgery so they can learn. They also don't want to be to optomistic so they don't get sued if something bad happens. Some doctors are straight out and pretty honest but most I've come across you have to watch like a hawk. Good Luck and remember learning never hurts you it only can help so ask all the questions you want and even the ones you don't Good Luck! Be your own advocate!
deleted_user
When I was younger I was very small and I got growth hormone injections. I am now 5'1, which is short but not nearly what I could have been. Maybe try that? Good luck and just give your son all the encouragement you can because obviously your doctors are lacking it.
deleted_user
I wish I knew exactly what to tell you, but with my own experience with taking care of my daughter, I can only say that sometimes your feelings as a mother for your son are right. I would definately research the medicine his doctor gave you and ask for second opinions. My daughter sees a pediatrition where this is his first case of Spina Bifida, so he is still learning along with us. So when I want expert advise or if I feel like her doctor is lacking, I consult my daughter's neurosurgery department. The nurses there have been more helpful with my daughter's needs than her regular doctor. So my advise is to trust your instincts or if you are worried get a second opinion, or two, or three.
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