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Thread: Son with spine birth defect

  1. #1

    Son with spine birth defect

    My 7 year old son has many of the problems I have found on this forum. He was born with defects of his spine, bladder, bowels and legs.

    He has a neurogenic bowel. He has a cecostomy which we irragate every other night with saline and a laxative. This works well for him.

    He was born with his urethra going into his bowels. He did not have a urethra in his penis at all. After surgeries to fix this, and still no bladder control, more tests were run, and it was found that he did not have a sphincter muscle at the base of his bladder and his bladder's capacity was less than 50ccs. He had a bladder augmentation, and a mitrofanoff. His stoma is in his navel. He does well with this most times. We have had a stubborn UTI, which was said to be caused by the mucus building in his bladder and creating stones. He has had those stones removed, and the UTI has cleared up. The only real issue is that he complains A LOT of feeling like he is going to throw up. I do not know what that could be from, or what to do for him.

    His spinal cord is tethered. The MRI is also showing "fatty strands" running along the spinal cord. The first doctor we saw for this wanted to do surgery, release the cord, remove the fatty strands, and send him home the same day. We found this unacceptable, and are going for a second opinion in a week. (My son has been in the Shriner's program since he was an infant, so we are going to their Philly hospital)

    He walks on his tiptoes, always has. Not one doctor can tell us exactly why, or what can be done to fix this. We have had him in leg braces...what a mess that was, and it did nothing.

    We were just told last month with his updated MRI that he has two extra vertebrae at the top of his spine, two sets of fused vertebrae, and two vertebrae in his lower back missing(the ones in the lower back we have known about since birth).

    I did not know that all the bowel, bladder, spine issues corresponded as much as they do.

    Sorry to have made such a long post. My spouse and I have not really met anyone else dealing with any of these things. I am happy that I have at least found a place that lets us know we are not alone in the daily issues.

    Neesy
    Last edited by Neesymc; 11-27-2010 at 09:23 PM.

  2. #2
    Member Peders's Avatar
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    you are not alone. I don't have any answers for you, but hold you in my thoughts.

  3. #3
    Moderator jody's Avatar
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    If he still feels sick, the uti must still be there. do you know if he gets an autonomic response? - raise in blood pressure, headache,nausea, fainting, rappid heart beat, this can happen depending on where his cord defect is. I only get autonomic Dysreflexia when uxing a foley, and it is blocked, or with bowel probs, or if I have a uti. It can be life threatening. It is basically a way the body responds to irritation below spinal cord injury.

  4. #4
    After the removal of the bladder stones, another culture was done, and no UTI was found. That does not mean however another has not started. He is not any of the "usual" signs of the UTI. No stinging, cramping, burning. He has not complained of anything else. No headache. Just nausea. I have tried to watch for a pattern ie: after he caths, after we flush his bowels, I can't seem to really find one. He complains mostly at night about it, particulary bedtime...I was just wondering, as a mom, ploy to not go to bed?

  5. #5
    Moderator jody's Avatar
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    a cold sweat, sometimes on one side of the body is anonther sign of AD. I dont know anything about the mitranoff procedure, but my friend gets AD if her sp catheter is rubbing againts the bladder wall, so it has to be positioned just right or she gets AD.

  6. #6
    thanks Peders....I really don't know how to tell you how if feels to finally hear someone say that. We have spent years feeling like we were in this bubble.
    On the upside, I will say, our son handles all the challenges very well. We have never let him think of himself as unable to do anything. Yes, things have to be done different, but the goal is accomplished.

    We have two older sons that think the world of their brother, and help as much as they can. Even if it is just to make him smile.

    Even with it all, we are a lucky set of parents, and would not trade or change a thing. It makes each of us who we are.

  7. #7
    Moderator jody's Avatar
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    does he get bladder spasms at nite?
    I get leg spasms when I try to unwind at the end of the day. also the neuro burn and broken glass feeling in my feet and butt gets to be more in the evenings. Im suspicious of his only feeling nausea when laying down. I dont have any medical training at all, just so you know, but his feeling nausea when he is laying down is a pattern. so Im wondering about the thingy they use to keep his stoma open. maybe when he lays down, it moves to a spot that is causing him go get the icky pukey feeling.

  8. #8
    Welcome Neesymc. No, you are not alone exp. here. this is a pretty good place for reassurance and advice.

    Have you been to Shriners yet. He is elgible for care and equipment until he is 21 there. great place.

    You are i my thoughts, stay strong. I'm sure the SCI nurse or someone with more knowledge will answer your questions better.

  9. #9
    jody--- he does have spasms sometimes at night, yes. I was wondering also if it could be his cecostomy moving. I also am not sure that the feeling is actually in his stomach, as in literally his stomach, or just the region. I think it will be mentioned at his visit next week.

    Patrick--We have been to Shriner's for his legs. They are the ones that provided the braces for him. They also provided some shoes when he was an infant. We did not know of all the other issues at that time. This trip to Philly next week will be the first time we will discuss any of the other issues with them. Until now, all of his care has been at the Children's Hospital in Columbus Ohio.

  10. #10
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    Does he have spina bifida? because that is what i have with an sci on top of it and it sounds almost exactly the same, minuss having no sphincter or urethra. My bladder holds maybe at most 120cc, but i dont have control of bladder or bowels.


    At one point in time i decided to be a ortho tech, went to school for it but then i decided to go with my passion so now im a professional photographer. Its common with kids that have spina bifida or related issues to walk on there toes and braces is highly recommended. You may not see the use/results now but in 5+ years you would. I have wore braces my entire life and cant walk with out them, but thats me. Usually they walk on there toes b/c there muscles or tendons in there legs are so tight it hard to walk "normal" as most able bodied say.

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