Mitrofanoff for children

[paws2ink]

Hi, all I'm a lurker, and have been mesmerized reading thru the threads. There has been a lot of comment about and from adult Mitro experiences, but I am looking for more info about Mitro and children.

Anika (7yo), my daughter, is T7/T8 para, three years post-injury, and her Drs have suggested I think about the Mitrofanoff Procedure for her. Reading the threads, I get the impression that it is a rough surgery, an awful recovery, and for most, the best thing they ever did...

So how do a Mom and Dad, making decisions for their child know the right answer? Her paralysis is a direct result of a stroke on her spine during a surgery to repair a spinal cord defect, and I am certainly not anxious to put her under the knife again, BUT, the resulting benefits (assuming nothing goes wrong THIS time) would be such a blessing.

By reading thru the threads, I have been able to compile a list of questions to ask her Drs. I'm worrying about the things I am NOT thinking about!
Share with me, please, some of the questions you would want answered, or your advice on how to go into this wisely. Any input is welcome! Thanks, Dawna

[paws2ink]

pronounce the darn name? Is it, Mi-TROH-fan-off, or My-troh-FAN-off, or.....?? Dawna

[Broknwing]

Dawna-
although I, myself do not have a Mitro, it's my understanding that it's fairly common in children w/a variety of neurological disabilites, not just SCI. I seem to recall a few people here being referred to pediatric urologists b/c they had more experience w/mitro's than general adult uro's did. Does your daughter already have a urologist that specializes in pediatric urology? I would think that would be a MAJOR thing to consider as she's so young and will be growing quite a bit over the years.....Hope this at least gives you a lil peace of mind that it's done for a lot of children....I can try to find some more info if you need me to.

I always pronounce it the first pronunciation....I ASSUME I'm pronouncing it right...but I dunno for sure....

[paws2ink]

LOL! THANKS for the quick reply!

Yes, she sees the uro at Shriners childrens hospital in Chicago, and he is the one who suggested it. Apparently he is a 'name' in the Mitro process. He has done a lot of them, and talked about it like it was no big deal Even her SCI Dr was pretty matter-of-fact when I talked (briefly) with him, and he reassured me that Dr. Chaviano was the best. Okay, great. He has done a lot of them, but from experience, I KNOW that somebody makes up the 'low-risk' numbers, otherwise it would be 'no-risk'. I just don't want that to be my child, again!

The more I know and consider, the better I can cope. I went into the first surgery with reassurances that NOTHING would go wrong, and we were all knocked on our butts, Anika literally!

[november]

That's a pretty low level of injury. Does she have problems cathing herself?
Why are you looking into this procedure exactly?

[SCI-Nurse]

All surgery bears some risks, but this is a relatively low risk procedure. The Mitrofanoff (the first pronounciation) was originally designed for use in children with spina bifida, and first used in the UK in the 1980s. It has not been used for adults with SCI nearly as long as it has in children. Is she doing her own urethral caths now?

I would also the urologist you are working with to pass on your name to several of his other Mitrofanoff patients' parents and ask that they call you to let you know about their experiences. He cannot give you their names due to HIPAA regulations. This may help to put your mind at ease and help you make this decision.

You are getting care at one of the best places for children with SCI, so you definately have that as an advantage.

(KLD)

[paws2ink]

Well, other than it was suggested, we have been unable to keep her dry. We can't increase her ditropanxl, as it makes her take a nasty personality turn!

IC is a source of anxiety for her, since she has trouble doing it "right", (her own anxiety, not one we have imposed, and we try very hard to make it 'no big deal') and she is nowhere near ready to try it on her own. She has great dexterity, but has trouble getting her clothes off, and transferring to the toilet. If she scoots her bottom forward in her chair, she can't balance, she can't see, and handle the supplies... gosh, lots of little things put together that we have been trying to overcome. Add to it that she wears a TLSO (the clam-shell-like brace) that is cumbersome, difficult to get in and out of.

Maybe she just isn't ready, and we should back off for awhile. She would be happy to let us do it for her, but since I know she COULD, I don't want her in middle school, still going to the school nurse to go potty! Not really condusive to fitting in with your friends, I would think.

I repeat, I am NOT anxious to go to another surgery. Please know that I haven't made ANY decisions, yet. I am just now starting to do the research. I have been thinking about it, weighing pros and cons, and thought you all might be able to give me some more to think about.

[paws2ink]

I would also the urologist you are working with to pass on your name to several of his other Mitrofanoff patients' parents and ask that they call you to let you know about their experiences. He cannot give you their names due to HIPAA regulations. This may help to put your mind at ease and help you make this decision.

You are getting care at one of the best places for children with SCI, so you definately have that as an advantage.

(KLD)

Yes, excellent thing to do, and it had started to penetrate the brain, and I appreciate you posing the question directly to me. Tends to clarify MY thinking! I will do that.

And yes, shriners is just amazing. Located in southern Indiana, we had several options on where to seek care, (Louisville, Cleveland, St. Louis +) and I am really glad I was able to get her there!

[LauraD]

Hi!! My daughter, Heather, 14 years old, t-12, 6 years post had her mitrofanoff when she was 9 years old. She was injured in a car accident when she was 8. She aslo has limited right hand use because of compartment syndrom in her arm. It is the best thing we have ever done. She is completely independent with all her cathing. I know she loves it. Heather has gone to Shriner's in Chicago and she really likes Dr. Vogel. She did have her surgery done in Madison, WI at UW Hospital. From our experience, I would recommend it. I know it is hard to have a healthy child go in for sugery and then feel rotten afterwards. I just hate that part. Heather also ended up needing bladder augmentation which she had done last year. Her bladder just didn't hold anything so it was necessary.

[paws2ink]

Laura, how did she handle the pre- and post-op procedures? We also see Dr. Vogel! Interesting guy...great doctor. I think I would push for the augmentation at the same time. I would hate to have to go back and do another surgery a year or two later. Enough trauma, already.

I am getting pressure from grandma to not do anything. Did you get support from your family? How do you answer the non-supporters? I have just reassured my mom that I have not made ANY decisions, yet, and I AM considering her points, as they are valid. (hence,no decision...duh...)