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Thread: Injury to my son

  1. #1

    Injury to my son

    My son had meningitis last Dec. He was so sick they did not think he would make it. He had a stroke on his right side. When he woke up he has dropped foot on his left side and a lot of weakness in his right leg. His arms were not weak at all. They assumed that this was from his stroke so did not do any sensory testing or anything. He also had a neurogenic bowel and bladder which they wouldn't call neurogenic because they thought it was from his stroke. It doesn't really matter but we found a different neurologist and she is starting to think his lower spinal cord was injured not that there will be anything on an MRI but that it still happened. She said that she has found a few meningitis cases that this has happened. My son has no reflexes in his legs. Loss of sensation on his butt and right thigh. Im not sure if it was worse before but I think it was. They never tested what sensation he had. He was only 7 and really sick so he wouldn't have noticed. His legs were in a lot of pain though. His anterior tibialis did not fire even with E-stim until about June. He does not wear a brace anymore and is starting to try to run. He still has bladder and bowel issues. He has to be cathed but as of April he can tell us when he needs to be and if it longer than 4 hour we just have him cath. He does it all on his own now. He seems to be recovering good. We see small improvements regularly but Im having a hard time finding other people with this type of injury. Is he doing well for how far out he is. I know that his urologist said that when his legs stop improving his bladder will too. If anyone could give me any advice that would be great. We are actually doing pretty well with a bowel program. He goes a few times a day not a lot but goes and then about twice a week we use Dulcolax orally. He seems to be doing good when we use Miralax he usually will have an accident. He has been able to tell us when it is a normal bowel movement that he has to go. that has been more recent. I would love any advice anyone has.
    Last edited by SCI-Nurse; 08-27-2009 at 05:36 PM.

  2. #2
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    Hi sml79,
    I don't really have any advice, but it sounds as though your son is doing very well post injury. I am sorry that you have all had to deal with this, but keep writing here and asking questions. I responded to say "hello" and also to move your post up a bit in the more recent list. Good luck.

  3. #3
    Thanks for responding. Yes he is doing really well. He really has not had a diagnosis for why he has the injury to his bladder bowel loss of sensation etc. until we switched neurologists. I am just curious how his recovery seems to be doing for that type of injury. Thanks again for posting. He a great little boy!!!

  4. #4
    My son is an L1 SCI and has similar sensory issues. Obviously the cause is different than what your son faces, but the bowel and bladder issues are very similar.

    We found that plenty of fruit and two colace (stool softeners) a day work best for the bowel program. The idea is for the stools to be firm, but not overly hard. Plenty of fruit is usually 2+ servings a day. Not hard to attain. For the first year he also drank a Citrucel for extra help. Now he doesn't need to.

    Feel free to send me private message if you need more details.

    Good luck.
    Ugh, I've been kissed by a dog!
    Get some hot water, get some iodine ...
    -- Lucy VanPelt

  5. #5
    Both stroke and spinal cord damage can cause a neurogenic bladder, but different types. What type does he have (based on urodynamics)? Does he have an upper motor neuron (spastic) or lower motor neuron (flaccid) anal sphincter? I suspect the latter. Most people with this type of bowel need to manually remove or strain to empty stool from their rectum several times daily, and the stool needs to be kept very firm or accidents with occur with any inadvertent straining (such as heavy exercise or even standing up). If you have not already done so, please download and read this booklet on neurogenic bowel management:

    http://www.pva.org/site/News2?page=NewsArticle&id=8095

    Is his urologist an expert in neurologic urology? Has he seen a good pediatric physiatrist? Did he get any inpatient rehab? I would recommend that he get to a Shriner's SCI Center (the closet to you is in Chicago) if at all possible.

    Is he going to school this fall? Do you have an IEP already established for him for school?

    (KLD)

  6. #6
    Yes he has a LMN. He actually has urodynamics in oct. We were the ones pushed to get a new neurologist. They kept telling us it was from the stroke but all of his symptoms point to cauda equina area. We ended up swirching to specialists at childrens memorial in Chicago. We go for an MRI in Oct also. His new neurologist feels there is peripheral nerve damage and that it is rare with meningitis but there are cases. We are about 8 hours a way from Chicago so it would be hard to go there for PT. He only goes 1 day a week, but we do a lot of kid type exerises at home swim,playground,etc... He can run just not like before and not very fast. His anterior tibialis that would not fire is getting stronger. He does not wear a brace anymore. I guess he is doing great considering, but I was wondering what chance he has of recovering more. We are so greatful, I know it could be a lot worse. He does not have accidents, unless we give him miralax like we were told originally to do(we dont anymore) He is able to strain to empty bowels. He does urinate a decent amount during bowel movement, but since reading in here I have him cath first so he does not strain his bladder. He has some sensation with bowels, it depends if it is a more normal stool. He can tell if he has to urinat around 300. It started at 4 months with him pushig on his bladder or a feeling of fullness, to now were he said he feels like he needs to pee without pressing on bladder. He has had a couple of rare occasions where he has leaked a little bit and he knows that. It seemed they were around the time he had swim everyday for two weeks if that means anything.

    IEP at school is still open, but so far they dont think they will be able to offer him much for services. He caths himself but I would like an aid to make sure he does an to be around in case he had a problem or accident.

    I would love to hear any other pointers

    Thanks

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