Has anyone ever let a dr do a non FDA approved procedure on their child?

Tanis - posted on 02/25/2009 ( 11 moms have responded )

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My daughter's dr wants to botox her bladder to help a chronic condition she has, but it is not FDA approved yet. Has anyone had any experience with this either way good or bad?

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Kim - posted on 02/25/2009

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I am a nurse and I have seen many medications and other procedures used for treatment that were not FDA approved for that particular disease or condition. If you have tried everything else I would try it. Remember just because it's not FDA approved for that particular treatment doesn't mean it is not good.

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Tanis - posted on 02/25/2009

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Thanks to everyone who replied. My daughter goes to Duke's Children's Hospital in NC. I have had great faith in them and my daughter loves her docs. It makes sense to me that the Botox would work to help paralize her over active bladder muscle and also help it maybe stretch a little more than the size of a walnut. It isn't scheduled for another 5 weeks, so prayers be with us and back to my grind of researching this more. thanks again

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I get Botox for spasticity in my legs and it works very well.  Just because the FDA didn't approve it for use specifically for the bladder muscle doesn't mean squat.  The FDA isn't the be all and end all of medicine.  They are something of a joke.



I read recently that they approved the commercial use of Bovine Growth Hormone in dairy cows after a 90 day trial on lab rats.  (We spend the extra on certified organic that labels with "NO BGh".



Yeah, they have no credibility with me.  My decisions are between my doctors and myself, FDA notwithstanding.

Reina - posted on 02/25/2009

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I have not made a decision like this but I do work for a company whereby we have CE mark approval in Europe but not FDA approval for the same procedure in the States. I don't think it necessarily means it's not a good procedure. Good-luck!

Elaine - posted on 02/25/2009

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I understand your feelings as I would do anything for my girls as well...just make sure you have exhausted ALL childrens hospital specialist opinions...sometimes you need to go to the best to get the best answer...you sound like a wonderful mom..good luck

Jamie - posted on 02/25/2009

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Quoting Tanis:

Has anyone ever let a dr do a non FDA approved procedure on their child?

My daughter's dr wants to botox her bladder to help a chronic condition she has, but it is not FDA approved yet. Has anyone had any experience with this either way good or bad?


 



When my daughter just started the 6th grade she became very ill with ulcerative colitis. She was immeadiatly hospitalized and was transfered to a hospital 3 hours from my home. After exhausting all other options (traditional therapy) and them not working, her doctor suggested a new medication that was still in the trial stages for children and was not FDA approved for the condition. I did some research on the drug and we decided to try it. It saved her life. Within 24 hours the bleeding had completly stopped (she had been in the hospital for 17 days, had had 2 blood transfusions, and was on TPN at this point. The medication saved her life. I would say do the research and make sure you understand and are comfortable with all of the risks and benifits first.

Kate CP - posted on 02/25/2009

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Well, it sounds like you have gone through every other step and the path has led you here. I wish you the best of luck and I hope your little girl gets to healing quick.

Tanis - posted on 02/25/2009

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The only things I have found on the web have been positive. They said either way this goes they can learn how to better treat her. She has been going thru this stuff for over 8 years now. She has had 2 other surgeries and nothing seems to work. I am desperate to help improve her quality of life. She is in 7th grade and has to wear adult diapers at night b/c she has a bladder the size of a walnut. and and overactive bladder muscle. She is on meds, but I am just at my witts end.

Kate CP - posted on 02/25/2009

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This sounds really risky to me and I don't know how gun-ho I would be about it. Have you exhausted all your other options for treatment? Have you looked into the case studies of this drug being use for this condition? I would do a lot of research before signing off on this.

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