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Thread: need advice and experience for child SCI

  1. #1

    Question need advice and experience for child SCI

    I have many questions and looking for answers. 10 yr old boy T10 (contusion) diagnosed as incomplete 7 months ago. Still no return of function or sensation, bowel and bladder incontinent.
    Does Vitamin B12 assist in cns function, how much for 90lb child may make a difference in CNS function?
    Will bowel or bladder control ever return?
    Has anyone tried "rejuvin"? and benefitted from it?
    Does Papayapro dissolve scar tissue to allow regeneration of axons?
    How much protein for 90lb child is recommended to maintain muscle in paraplegia?
    What is Neurotrophic factor, Neurotrophin -3, annd Neurol? What does ity do, can it help?
    What is locomotor training, how much, how often, annd what stats of benefit?
    What is SSEP testing, do we need to get it?
    Afraid to ask if and when methylprednisolone was given and when, what if they didn't give it, or soon enough?
    ALSO, as far as looking for answers, has anyone attended the Healing Outpouring revival in Lakeland< FL, that has had so many testimonies of healing, and know of any with SCI paralysis that have been healed?
    Any answers to any of my concerns will be greatly appreciated. I have many more questions to come!

  2. #2
    i hope one of the nurses see this and can help ya some. i have no idea.
    oh well

  3. #3
    Methylprednisilone is not recommended or generally used in children.

    B12 may help with peripheral neuropathy, but I have seen no evidence that it helps with CNS healing.

    Only time will tell if any return will occur. Has he had any return at this point since the original injury? This is the best predictor. You say he is incomplete...what ASIA category? Has this changed?

    I hope he is not still incontinent of bowel and bladder. Did he not get any rehab? Is he not on a good bowel and bladder management program? Where did he go for rehab?

    Some of the chemicals you talk about have not been used in humans but are from research studies with animals. You may want to read about the status of these studies in the Cure forum.

    Others are over the counter non-traditional treatments. I have seen no evidence of any effectiveness of their use in SCI. You can certainly ask about others experiences though.

    Spiritual healing is explored by many. I personally am quite skeptical. A 10 year old should be in school, playing sports, and having fun with his friends, instead of spending all his time going from one healer to another or wasting time and money on unproven and ineffective treatments, but that is my personal opinion.

    I will ask Dr. Young to comment on this too.

    (KLD)

  4. #4
    Quote Originally Posted by missrhonda
    I have many questions and looking for answers. 10 yr old boy T10 (contusion) diagnosed as incomplete 7 months ago. Still no return of function or sensation, bowel and bladder incontinent.
    Does Vitamin B12 assist in cns function, how much for 90lb child may make a difference in CNS function?
    Will bowel or bladder control ever return?
    Has anyone tried "rejuvin"? and benefitted from it?
    Does Papayapro dissolve scar tissue to allow regeneration of axons?
    How much protein for 90lb child is recommended to maintain muscle in paraplegia?
    What is Neurotrophic factor, Neurotrophin -3, annd Neurol? What does ity do, can it help?
    What is locomotor training, how much, how often, annd what stats of benefit?
    What is SSEP testing, do we need to get it?
    Afraid to ask if and when methylprednisolone was given and when, what if they didn't give it, or soon enough?
    ALSO, as far as looking for answers, has anyone attended the Healing Outpouring revival in Lakeland< FL, that has had so many testimonies of healing, and know of any with SCI paralysis that have been healed?
    Any answers to any of my concerns will be greatly appreciated. I have many more questions to come!
    missrhonda,

    I am worried that your questions are missing the most important issues. To me, the most important issues for a 10-year old boy with spinal cord injury are:
    1. Is he back in school and active as a 10-year old boy?
    2. How much exercise is he getting for the paralyzed parts of his body?
    3. Does he have an experienced doctor who is taking care of his problems?

    Let me take each of these in turn. It is really important that the spinal cord injury does not affect his schooling or his activities and friendships. He must get back to school and he must be in a situation where he can play and be friends. It would be a far greater injury to him if the spinal cord injury were to interrupt his schooling and his socialization. By the way, spinal cord injury is not an impediment to sports. There are many paraplegic athletes.

    At the present, the effective activity that restores function in spinal cord injury is repetitive use of the paralyzed parts of the body. If he is "incomplete" as you suggest, he should be walking as many hours of the day as he can. He should be swimming. He should be standing. I suspect that he was not "incomplete" during the weeks after injury because he would be probably be walking now if this were true. About 90% of people with incomplete spinal cord injury recover ability to walk independently within a year after injury.

    Finally, it is critical that he has a experienced doctor who monitors and can take care of the various complications of spinal cord injury. Children that are injured before puberty have a high risk of developing scoliosis (curvature of the spine) and this needs to be monitored and prevented. They of course have difficult with bladder function. There are many solutions that have been developed. He must take good care of his body so that the regenerative and other therapies have a chance of working in the future.

    In my opinion, while there will be therapies that will restore function in people in spinal cord injury, it is important that people don't postpone life, education, and other important parts of their life for these therapies. This is particularly true for children. It will not be a matter of if but rather when such therapies would be available. These therapies will only come from careful scientific research.

    I am sorry but I don't think that miraculous cures exist. If B12 worked for spinal cord injury, everybody would be taking it. If the healing outpouring in Lakeland worked, everybody with spinal cord injury would be going there. If curing spinal cord injury were as easy as putting on some papaya juice or some natural concoction, there would be a lot more cured people. There are many claims of treatments that "cure" spinal cord injury but none of them are credible at the present.

    Now, in answer to your specific questions:
    • Your question concerning return of bladder and bowel function, and your description of incontinence suggests strongly that he has not recovered these functions. Yes, some people usually do recover such functions if they are incomplete and but seldom do so when they are "complete".
    • Methylprednisolone was tested in adults and restores about 20% more function. Its effects on children have not been tested. Some small retrospective studies suggest that it may help restore function in children. It can be given safely to children. But, because there is little information on the subject, most doctors do not give methylprednisolone to children with spinal cord injury. The drug must be given as soon as possible after injury. It is too late now and it is best not to worry about it.
    • Neurotrophins are growth factors that stimulate neurons and axons to grow and to survive. There are four members of the neurotrophin family: nerve growth factor (NGF), brain-derived neurotrophic factor (BDNF), neurotrophin-3 (NT3), and neurotrophin-4 (NT4). They are activate tyrosine kinase receptors (trk receptors). There are other growth factors, including glial-derived neurotrophic factor (GDNF) and fibroblast growth factor (FGF). There is evidence that combination of these growth factors applied to the spinal cord can restore function. One of the most attractive ways of delivering these growth factors to the spinal cord is to transplant cells that make these neurotrophins. it turns out that umbilical cord blood mononuclear cells produce these neurotrophins and lithium stimulates these cells to produce more. We are testing this in clinical trial in China and we are working on carrying out parallel clinical trials in the United States. We have been talking to the Shriner's Hospital in Philadelphia about doing such trials here... As you may know, this is one of the best spinal cord injury centers for kids in the the United States.
    • Locomotor training has been proven to help restore locomotor function. While training is necessary for locomotor recovery, it is often not sufficient. Nevertheless, I believe that it is helpful for a person with spinal cord injury to stand as much as possible and to do locomotor training.
    • SSEP stands for somatosensory evoked potentials. This is a test of sensory function by stimulating peripheral nerves and recording the responses from the brain (with electrodes placed on th scalp). I use to do a lot of SSEP monitoring in the operating room. While it is useful for assessing sensory function in babies and in anesthetized patients, I am not convinced that it provides any information that cannot be obtained through a careful neurological examination. In any case, the test will not provide any information that would change the course of therapy. Therefore, I don't think that it is necessary to get one.

    I hope that this is helpful and please do keep asking questions.

    Wise.
    Last edited by Wise Young; 06-27-2008 at 12:28 PM.

  5. #5

    Unhappy

    Thanks for the very informative advice. So many concerns were addressed.
    He was diagnosed as incomplete on medical records. he had no movement and no sensation below the waist. I don't know what the Asia was.
    7 months later, he has no sensation, has trace hip flexors.
    He has no sensation or control of bowel or bladder.
    He is on a regular B&B program daily.
    He went to Brooks Rehab in Jacksonville, FL. He was not on SCI floor though, he was on pediatric unit, which treated pediatric general rehab such as many brain injuries, some SCI, and burns. I was not impressed with the therapy as inpatient for 5 weeks.
    I'm glad to hear of reputation of Shriners in PA, he will be seen there in August. They may attempt to try leg braces.
    This was devastating and I was hoping to get clues as to finding this injury temporary so we could return to life prior to injury.
    This was a seatbelt injury from a collision, how could it have been so bad, so serious.

  6. #6
    And more, he can't walk, he can't feel, he doesn't stand.
    yes he is back to school
    he is not happy about being paralysed, he is 11 years old. he does not live like he use to, he was a football player and had girls after him before the accident. now he feels like people want to be nice to "help" him.
    He will be getting a standard stander, but insurance refused to pay for the glider option which was recommended, so he wont get the reciprocal motion for moving his legs, as suggested to "keep exercising lower extremeties" Too bad, insurance co. doesn't see it as important enough!
    MONEY, MONEY, MONEY
    I read about project walk too, about $3,000 month, that might make a difference in months to years of continuous involvement. I can't afford that either. Maybe the rich can get a little more benefit and happiness. so, we pray and wait.

  7. #7
    shriners is a nice facillity. philadelphia has great nurses and aids and therapists.

  8. #8
    Junior Member
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    Sriners is a great place. My granddaughter was up there last year. She just left in Nov. The nurses are great, ask for a ms. Joan, ( tell her Faith says Hi) she can help you understand what the doctors tell you. Dr. Reed is also very good with the children placed in her care. Ms. Sue will keep you very updated. Good luck in Philadelphia . And as a caregiver for a 4 year old who was injuried 11 months ago and is a c1 c2. She has begin to show slow signs of recover. We do alot of home therepy. Look in to the Rt 300 bike. It does cost but we were able to get donation t help. We also use our home pool to get her out of the wheelchair. I lkie you know that a child gets mad. You son must be having a very hard time being 11, Faith was only 3 when she stopped running. We have had to go and get medication for depression. Who know that a three year could get depressed. Like you we don't have the money, but are trying things at home. Good luck and we wil add you to our pray list.

  9. #9
    It's excellent that he is going to Shriners. That is the best place he could be...and it won't break your budget!!

  10. #10
    Thanks for the caring replies. I appreciate the advice. I left a thread abouyt how and where to get finding or donations, such as for the rt 300 bike. I want to do so much and give him the options, but don't have the money. quit working since accident to help him.
    Here's more questions.
    what is Bruckner's Biofeedback?
    What is Bioness leg braces and where do you get them?
    What location is closest to NW FLorida that has Locomat for pediatric pt?
    What forum should I ask these questions? probably exercise and rehab.
    thanks again.

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