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Thread: Ten frequently asked questions concerning cure of spinal cord injury

  1. #481
    Junior Member
    Join Date
    Apr 2008
    Location
    Guilford,CT
    Posts
    16
    Dear Dr. Young,

    I just read your article and took note of your comments regarding bisphosphonate alendronate and slowing bone loss. Would this be an appropriate treatment for an eleven year old boy? Our son, Lucas, is a C-6/7 quad due to a pylosytic astrosytoma.(sp?) post laminectomy in Nov. 2004. We happen to have an appointment with the pediatric endocrynologist on Feb. 3rd to discuss the results of a recent bone density test. Lucas rides the F.E.S. bike 3x a week for 50 minutes, and uses the lite gait trainer 3 other days a week for 35-45 minutes a session. He has been doing this for about 18 months following his trip to KKI. We are interested in seeing if there has been any arresting of bone density loss since the last scan, which was done previous to this course of therapy. If this drug would be a proper one, would you have a recommendation for dosage that I could discuss with the doctor? Lucas is about 70 lbs, and about 4'6" in height. He is also in good health, with the exception of recent bladder and kidney stone surgery.
    Once again my husband and I would like to thank you for your ongoing research , and the way you have dedicated your life to helping people like our son. Also, I would like to thank you for your accessibility to those of us who either care for or live with an SCI injury. It is very comforting to know we can contact someone who actually knows the answers to our questions. Thanks again.
    Audrey
    Last edited by audreys; 01-31-2009 at 11:43 PM. Reason: Not finished

  2. #482
    Quote Originally Posted by audreys View Post
    Dear Dr. Young,

    I just read your article and took note of your comments regarding bisphosphonate alendronate and slowing bone loss. Would this be an appropriate treatment for an eleven year old boy? Our son, Lucas, is a C-6/7 quad due to a pylosytic astrosytoma.(sp?) post laminectomy in Nov. 2004. We happen to have an appointment with the pediatric endocrynologist on Feb. 3rd to discuss the results of a recent bone density test. Lucas rides the F.E.S. bike 3x a week for 50 minutes, and uses the lite gait trainer 3 other days a week for 35-45 minutes a session. He has been doing this for about 18 months following his trip to KKI. We are interested in seeing if there has been any arresting of bone density loss since the last scan, which was done previous to this course of therapy. If this drug would be a proper one, would you have a recommendation for dosage that I could discuss with the doctor? Lucas is about 70 lbs, and about 4'6" in height. He is also in good health, with the exception of recent bladder and kidney stone surgery.
    Once again my husband and I would like to thank you for your ongoing research , and the way you have dedicated your life to helping people like our son. Also, I would like to thank you for your accessibility to those of us who either care for or live with an SCI injury. It is very comforting to know we can contact someone who actually knows the answers to our questions. Thanks again.
    Audrey
    Audrey,

    The correct spelling pilocystic astrocytoma. I use to work with Fred Epstein in the 1980's and have been present in some of the operations that he did on kids of intramedullary astrocytomas.

    I don't think that I would recommend bisphosophonates for children. The reason is that the bone should still be growing and not only are the effects not known but I am not sure that it is good to interfere. On the other hand, I think that what you are doing is right. He should be on his feet as much as possible, swimming, hanging, swinging, and putting stress on his skeleton like other children.

    We are talking to Randy Betz at the Shriner's Hospital and are in discussion about starting clinical trials aimed at kids with chronic spinal cord injury.

    Wise.

  3. #483

    Help! Can't find reason for low blood pressure, low blood oxygen

    Hi, I'm taking care of my my mother C3/C4 complete and she keeps running into problems with her blood pressure tanking. I've had to take her to the hospital two times and she would have died if I hadn't, it was 48/34 when she went unconcious. Also, her blood oxygen level is below 83 and she is running a high fever. Her primary care doesn't know the cause and I've posted on many websites but I still don't have an answer as to why this is happening. Please,anyone on this site taking care of a loved respond. If you've ran into this problem, what caused it? Any info would be appreciated.

  4. #484
    Quote Originally Posted by svaughan200 View Post
    Hi, I'm taking care of my my mother C3/C4 complete and she keeps running into problems with her blood pressure tanking. I've had to take her to the hospital two times and she would have died if I hadn't, it was 48/34 when she went unconcious. Also, her blood oxygen level is below 83 and she is running a high fever. Her primary care doesn't know the cause and I've posted on many websites but I still don't have an answer as to why this is happening. Please,anyone on this site taking care of a loved respond. If you've ran into this problem, what caused it? Any info would be appreciated.
    svaughan, I am copying your post to the Care Forum where I will answer it.
    http://sci.rutgers.edu/forum/showthr...65#post1008465

    Wise.

  5. #485
    If a "cure" does end up coming along, what about us who have incomplete injuries. I fear we may be put on the back burner so to speak. I have minimal movement, right now were just waiting on my spine to heal up alittle more and kinda just waiting to see what happens. To be completely honest with you, all this cure stuff with the big words and long terms kinda just goes right over my head. When you say "cure" may just mean looking as though you were never SCI That is exactly what I'm looking for. I know I'll never be 100% again, I would be happy with 80% maybe walking with a limp or needing to sit and rest allot.
    T6/T7 Incomplete Since June 7th 2008
    Walking part-time with KAFOs & Walker
    *Never Quit Pushing*

    http://profile.myspace.com/index.cfm...endID=20290962

  6. #486
    Quote Originally Posted by Kimmel21 View Post
    If a "cure" does end up coming along, what about us who have incomplete injuries. I fear we may be put on the back burner so to speak. I have minimal movement, right now were just waiting on my spine to heal up alittle more and kinda just waiting to see what happens. To be completely honest with you, all this cure stuff with the big words and long terms kinda just goes right over my head. When you say "cure" may just mean looking as though you were never SCI That is exactly what I'm looking for. I know I'll never be 100% again, I would be happy with 80% maybe walking with a limp or needing to sit and rest allot.
    Kimmel,

    I have heard fears and concerned from both ends. People with "complete" spinal cord injuries are afraid that doctors don't think that they will recover and therefore they will be excluded from trials. People with "incomplete" spinal cord injuries are afraid that they will be omitted from trials. I believe that clinical trials should include both complete and incomplete injuries and that the trials should be designed to analyze the responses of these two groups of patients separately.

    Many doctors believe that it is less risky to do surgery on patients who are "complete". This is, for example, apparently the rationale for why the Geron trial focused only on patients who have complete thoracic spinal cord injuries. However, I think that for somebody with severe incomplete injuries, the risk is not any less or greater than somebody with a complete injury, if the treatment were to produce ascent of lesion level or produced a tumor in the spinal cord.

    In my opinion, phase 2 clinical trials should include both complete and incomplete. Sooner or later, we have to study both and it is better to do it up front than later. This way, we can find out earlier and focus the treatments so that the phase 3 trials have a higher chance of success.

    Wise.

  7. #487
    Wise, I have a question regarding AD. Is a rise in blood pressure always present? I've had all the symptoms except the high blood pressure, when we took it, it was the lowest I've ever had, along with the slow heart beat.

    Could it have been something else?

  8. #488
    Quote Originally Posted by smokymtn memories View Post
    Wise, I have a question regarding AD. Is a rise in blood pressure always present? I've had all the symptoms except the high blood pressure, when we took it, it was the lowest I've ever had, along with the slow heart beat.

    Could it have been something else?
    Autonomic dysreflexia usually is associated with increased blood pressure. This is because the sympathetic nervous system generally increases heart rate, blood pressure, and sweating. If the sympathetic nervous system is hyperactive (sort of like your lower spinal cord is spastic), due to stimulation or pain, you get higher blood pressure, heart rate, and sweating.

    The parasympathetic system generally opposes the sympathetic system. For example, your vagus nerve mediates much of your parasympathetic activity and it slows down your heart. However, low blood pressure usually results from low sympathetic activity or the presence of hormones that cause vasodilation.

    People with high thoracic spinal cord injury sometimes get bradycardia (slow heart rate) and hypotension (low blood pressure). This is because the sympathetic nervous system in the thoracic spinal cord controls the sympathetic nervous system. In other words, the injury has damaged the sympathetic system and reduced its activity.

    The following emedicine article describes some of the symptoms
    http://emedicine.medscape.com/article/321771-overview

    Wise.

  9. #489
    Senior Member
    Join Date
    Sep 2001
    Location
    New York USA
    Posts
    291
    You ever worn a C3 complete for testing ready and willing, but I guess I will have to wait my turn. Question AD, I was taught to place Nitro bid on the forehead, it works great there could never got the real reason why to use it there. Trust me you will know if you go AD, the headache you will get sweating clammy feeling will be something you will never forget. I go through it once a month changing a suprapubic catheter, and I have a urologist in West Orange rehab do the changing. My normal blood pressure and 90/60 and when you go ad in a matter of seconds 189/119. Don't play games with ad
    so how many more years before we get walking?
    keiffer66

  10. #490
    Thanks Wise, that article cleared up the confusion. I believe I get bradycardia, it's only been twice, but that's enough.

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