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Thread: Looking for stem cell treatments for Kernicterus (Cerebral Palsy/ANSD)

  1. #1

    Question Looking for stem cell treatments for Kernicterus (Cerebral Palsy/ANSD)

    Hello, my name is Tom. My son, Alastair, is 9 months old, and he has a form of brain damage called Kernicterus that has symptoms much like cerebral palsy. It was caused by jaundice during his first week of life and left him with impaired motor function, auditory neuropathy (profound deafness), and assorted other neurological quirks.

    Seven days ago I took him to Dr. Steenblock for a subcutaneous injection of 20 million allogeneic cord-blood derived stem cells. So far there has been no improvement. However, in that time, I found a research study where kernicterus was cured (or at least largely improved) in rats, here: http://www.ncbi.nlm.nih.gov/pubmed/26818600

    This new study uses adipose derived stem cells injected intrathecally into the rats. So, I'm now looking for treatments like that. Having done more research on stem cell delivery methods, I just don't think the subcutaneous treatment my son already received is likely to ever work. But it's difficult since a lot of places (including Steenblock) don't do intrathecal injections due to possible complications, but since the only current empirical evidence is for that case, I feel like this is the best chance for my son.
    Last edited by SorcererXIII; 05-09-2016 at 01:37 PM.

  2. #2

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    There are some clinics doing intrathecal injections in Mexico, but I am not sure if they are treating children or not. Have you contacted any of the clinics there?
    First treatment in 2007. Pioneering ever since.

    Barbara

  3. #3

    Default

    Quote Originally Posted by barbara View Post
    There are some clinics doing intrathecal injections in Mexico, but I am not sure if they are treating children or not. Have you contacted any of the clinics there?
    Thanks for the suggestion...I'm (re)starting the process right now and only contacted 2 places in Mexico. Here is what I have:

    • David Steenblock - CA - Uses allogeneic cord blood or adipose stem cells injected subcutaneously, won't do IV or intrathecal injections
    • Norvastem - Tijuana - Cured Gordie Howe's stroke. Won't treat pediatric patients.
    • Regen Center - Dominican Republic - Uses adipose or bone marrow stem cells injected with IV.
    • StemCellGeneticMed - Lima/Cancun - Claims to have experience with kernicterus, but didn't reply with specifics. Administers neuron stem cells intrathecally. Treats infants as well. Is $35k.
    • Stem Cell Institute - Panama. Uses cord tissue stem cells. Will not perform intrathecal injections on pediatric patients.
    • Stemedix - Florida - Uses harvested adipose stem cells injected intravenously or intravascularly


    Of these I've only contacted Norvastem, Steenblock, StemCellGeneticMed, and Stem Cell Institute so far.

  4. #4

    Default

    What about World Stem Cells in Cancun?
    First treatment in 2007. Pioneering ever since.

    Barbara

  5. #5

    Default

    Quote Originally Posted by barbara View Post
    What about World Stem Cells in Cancun?
    Nope, wasn't on my radar, but thanks for bringing it to my attention! I just called them, here's what I gleaned:

    • Stem cells from bone marrow of patient
    • Both intravenous and lumbar puncture (intrathecal)
    • 5 day treatment
    • 1st day signing forms, patient evaluation, blood draw, stem cell stimulation
    • 2nd day - same as first
    • 3rd day - expand and culture stem cells for next day
    • 4th day - 1st infusion done intravenously
    • 5th day - 2nd infusion with lumbar puncture
    • Cost is typically $13k - $18k


    It's not adipose tissue, but, from what I have read, the main ingredient - mesenchymal cells - is the same for bone marrow (correct me if this is wrong). So this may be the winner.

  6. #6

    Default

    Lots of doctors are using bone marrow now instead of adipose. I would also think it would be far easier for a child to have that done rather than liposuction. If the cells are cultured, then a good amount of msc's should be available for infusion.
    First treatment in 2007. Pioneering ever since.

    Barbara

  7. #7

    Default

    Overall it seems the advantage of adipose is that it proliferates faster and is possible to get greater quantities of cells before they enter senescence (when their regenerative effects are lost). And cord tissue yields more cells than either, but most people (including my son) can't get autologous cord tissue.

    Some random papers on the subject, about 10% of which I actually grasp:

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2971538/
    http://online.liebertpub.com/doi/ful.../scd.2011.0722
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2031970/
    http://www.bioinformant.com/adipose-...he-difference/
    http://stemcellres.biomedcentral.com...287-015-0066-5


    One thing I've read (forgot the source) is the wound left behind by the mini lipo needs time to heal before re-injection, otherwise the stem cells will home in on the wound rather than where you want (in this case the brain).

    In my son's case I'm pretty reluctant to take any of the already scant (for a baby) fat on his bones.

  8. #8

    Default

    I am not a fan of lipo. I think for a child it might be very difficult.
    First treatment in 2007. Pioneering ever since.

    Barbara

  9. #9

    Default Small update

    I spoke with nurse Gina at Steenblock's office and she said that he does indeed offer intrathecal injections, but may not be willing to do so on a pediatric patient. We are going to discuss further at the 3-week mark, at which point she said we will have started seeing any benefits from the subcutaneous treatment (it has been 11 days).

  10. #10

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    Thanks for keeping us up to date on your search.
    First treatment in 2007. Pioneering ever since.

    Barbara

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