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  1. #1
    Join Date
    Dec. 21, 2005
    Location
    Colorado Springs, CO
    Posts
    1,835

    Default Stem cell therapy- Any experiences?

    My 5 year old daughter has cerebral palsy due to a brain injury at birth. She was 15 weeks premature and suffered severe ventricular hemorrhage. She is emotionally delayed, but very intelligent. She has little use of her left arm and both legs.

    Since the therapy is not yet available in the US, we are planning to take her to Germany this summer for stem cell treatment. The cells will be extracted from her own pelvic marrow and processed for injection into the damaged portions of her brain. This may sound drastic, but for a child who has undergone more than 13 brain surgeries for shunt repair and replacements, this should be a walk in the park.

    We know that there is a distinct possibility we may see no results. About 70% of this clinic's patients show some sort of improvement, so we are willing to take a chance. Her stem cell treatment will be followed by 3 weeks of intensive physical therapy back in Florida in the hopes of "programming" any new brain cells.

    So, does anyone here have any experience with stem cell therapies in either humans or animals? I'm very excited for the possibilities, but also terrified that we will put my sweet Lily through an ordeal for nothing. Not to mention the thousands of dollars that Lily's grandparents are laying out for this treatment.
    "Is it ignorance or apathy? Hey, I don't know and I don't care." ~Jimmy Buffett



  2. #2
    Join Date
    Apr. 15, 2008
    Location
    Orlean, Va
    Posts
    2,057

    Talking There is Hope

    Yes, I have had stem cell as have other members of my family. We have used PRP, prolo and BMAC. Super results!

    I do have the names of some of the U.S. stem cell gurus if you want to talk with them, too. (They are the ones that we have used)

    Please send me a p.m. I am happy to talk with you.

    There are many threads about stem cell over on the disabled/rehabbing riders forum. Please search for threads and info there as well as the off course forum.

    There is a major conference in Brazil this month. I hear that there are many new papers being presented. Let's keep our fingers crossed that there is good news...



  3. #3
    Join Date
    Feb. 28, 2006
    Location
    The rocky part of KY
    Posts
    9,171

    Default

    My mother went to Mexico for her stem cell therapy. This would have been more than five years ago, perhaps eight? She has MS. It was not a cure but I do believe that she showed some improvement/delayed progress of the disease. There was a period of time where she was able to go on some MS sponsored cruises and get out and about. At the moment she is close to 80 and her issues are not just caused by the MS.

    I wouldn't begrudge the money, not one cent, and I wish all the best for your DD and your family.
    Courageous Weenie Eventer Wannabe
    Incredible Invisible



  4. #4
    Join Date
    Feb. 14, 2009
    Location
    Virginia
    Posts
    615

    Default

    My going-on 4 yr. old client has cerebral palsy and has so far had two cord stem cell infusions at Duke. He was the second child accepted into Dr. Kurzburg's experimental program. The first boy, Dallas Hextell, was featured on NBC's Today Show as a program success story. (you can find youtube video of the episode.) How much of Dallas' success is due to the treatment, ongoing therapy, or just maturation and growth over time, I don't know.

    Followup MRI on my client show a distinct improvement in his brain developement. I have been working with him since shortly before his first infusion, about 15 months ago. He has not responded to the therapy quite so drastically as Dallas, but there are areas of progress. But again, how much is attributable to the intensive PT, Speech and OT iI provide is the question.



  5. #5
    Join Date
    Jan. 18, 2007
    Location
    Heaven on Earth--Sonoma County, CA
    Posts
    1,478

    Default

    My uncle had stem cell therapy to combat multiple myeloma (bone cancer). The cells were harvested from his sister, and transplanted into the marrow of the affected bones (mainly the spine and pelvis).

    It has worked well in terms of combatting the progress of the disease--he has shown no new growth in two years. (Multiple myeloma is a cancer that they say can't be put in to true remission--it will eventually kill him one way or another, but they can use therapies like stem cell to make that inevitability hold off for one to two decades.)

    However, the transplant has been problematic in terms of his body's acceptance, and he has had to go on anti-rejection drugs, and steroids, which has pretty much decimated his immune system. He lives a relatively normal, happy life, but he gets the steroid weirdness from time to time, and he gets sick, a lot. Colds, flus, etc.

    Still, he views getting a lot of colds as a more than reasonable trade-off. Best of luck to you and your family!
    Phoenix Farm ~ Breeding-Training-Sales
    Eventing, Dressage, Young Horses
    www.phoenixsporthorses.com
    Check out my new blog: http://califcountrymom.blogspot.com



  6. #6
    Join Date
    Dec. 21, 2005
    Location
    Colorado Springs, CO
    Posts
    1,835

    Default

    Thank you all for your replies! Your experiences are helping me to feel more confident that we are doing the right thing for Lily and that it may turn out to be worth the hassle, discomfort, and expense.

    There will always be that thought in the back of my mind, wondering if it's the stem cells, or if Lily will be progressing just as she would have without them. I suppose we'll never know, but I can rest easier knowing that we are doing absolutley everything possible to give Lily the best shot at reaching her full potential.
    "Is it ignorance or apathy? Hey, I don't know and I don't care." ~Jimmy Buffett



  7. #7
    Join Date
    Feb. 3, 2010
    Posts
    403

    Default

    No experiences but best wishes to Lily and your family.



  8. #8
    Join Date
    Feb. 4, 2001
    Location
    Sheridan, IN
    Posts
    3,435

    Default

    No experience with stem cell, but we also have a CP family member--she was born 2 days after 6 months--her mom developed toximea & they had to deliver Jamie or they both would have died (and it was really touch and go for both of them).

    Jamie spent nearly a year at Riley, has CP and other issues, but her parents have been unrelenting in their pursuit of her development. She's going to school (she was born in 1997, 16 oz, dropped to 12 oz and was so very tiny), rolls when no one can help her either walk or use her chair, is a cheerleader (in her chair, assisted by the other girls), and is an AVID sports fan. She got her stomach button out a year or so ago and is finally able to eat enough by mouth to sustain her, which is a great source of accomplishment and freedom for her and her family. We're really proud of her, she's a tough little girl who has never given up, and had stem cell been available 10 years ago I'm sure it would have been considered.

    Best of luck to you and yours. All you can do is the best you can do and then it is out of your hands. I'd love to hear an update after you've had the proceedure.



  9. #9
    Join Date
    Dec. 21, 2005
    Location
    Colorado Springs, CO
    Posts
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    Default

    Thank you, Ponies and LAZ.

    We're tenatively aiming for mid to late June to make the trip. I will try to remember to post an update during any off-topic days this summer.
    "Is it ignorance or apathy? Hey, I don't know and I don't care." ~Jimmy Buffett



  10. #10
    Join Date
    Feb. 14, 2009
    Location
    Virginia
    Posts
    615

    Default

    Wishing for the best for your daughter, and looking forward to updates.



  11. #11
    Join Date
    Jun. 10, 2001
    Location
    Rising Sun, Maryland, USA
    Posts
    5,122

    Default

    I just wanted to say, best wishes!
    http://www.leakycreek.com/
    http://leakycreek.wordpress.com/ Rainbows & Mourning Doves Blog
    John P. Smith II 1973-2009 Love Always
    Father, Husband, Friend, Firefighter- Cancer Sucks- Cure Melanoma



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