Bone Marrow Stem Cells for Brain Injury: Children 1-8 years

shawntain

New member
Hi All,

Happy to find your group here online! It hasn't been easy to locate much in-depth discussion of stem cell treatment options.

I have a wonderful little boy, ten months old, who sustained a moderate hypoxic brain injury at birth due to a tight nuchal cord.

He is thriving cognitively, socially, and emotionally but his fluctuating muscle tone has created motor delays (still does not sit and can just barely scoot a bit on the carpet, delayed fine motor skills). He is also on a g-tube and has no interest in oral nutrition despite lots of therapy. He is at risk for an athetoid CP diagnosis.

Happily, Heath was accepted to the following clinical trial at the University Hospital in Monterrey, Mexico:
http://clinicaltrials.gov/ct2/show/NCT01019733

"Detailed Description:

There is accumulating evidence that shows that the placement of hematopoietic cells in the brain may increase growth-enhancing factors of axons and generate active neurons in the receptor. It has been found that after introducing hematopoietic cells in the subarachnoid space of the spinal cord, these cells may be transported through the cerebrospinal fluid and can be deliver more efficiently to the injured area, when compared to the intravenous route. Patients will be stimulated 5 times and then harvest the bone marrow. Bone marrow will be processed in order to obtain hematopoietic cells (CD34+) and minimize the erythrocytes amount. A inoculum of 8 to 10mL of stem cells will be infused intrathecally. Patients will be evaluated with the "Battelle Developmental Inventory" before the procedure and one and three months after that."

I know many of you have done extensive research on treatment options and safety considerations. Our medical team here in Seattle is not able to weigh in on the safety of this procedure, but we are very inclined to have Heath participate, based on what we have been able to dig up ourselves on PubMed. Also, a physician member of ICMS was kind enough to examine the details of the study and reply anonymously through David. He said the bone marrow aspirate concentrate is safe and the lumbar puncture method of delivery is valid.

Have any of you come across data to the contrary? What gives me pause is that I emailed Joanne Kurtzman of Duke University fame (treated kids with CP with their own cord blood) and she replied with a one-liner stating that she did not think this method of delivery was safe and she did not recommend this therapy. I'm confused as to why (beyond the usual risks of anesthesia, infection, etc.) and she is I believe too busy to elaborate. Perhaps there are liability issues if she advises me, as the technique is unproven? Have emailed several authors of medical articles on related topics and received no response as of yet.

Would very much appreciate any insight you all have gained through your own research or names of qualified US doctors or researchers willing to consult on such matters. Many thanks and good luck to all!

Shawntain

 
intrathecal vesus intra-arterial

Shawntain,
My son has received umbilical cord blood derived stem cells via an arterial catheter. We are moving towards a bone marrow derived autologous stem cell transplant via another arterial catheter through the carotid to just below the brain. I have been very curious about lumbar puncture stem cell delivery. Have you researched the flow of the CSF from the lower spinal column up through the brain, which is where you want them to go and stay around? Does the CSF even flow upwards to the brain given that it produced in the brain and is completely flushed and refreshed with new CSF continually? Any information you have on this would be interesting...
Thank you,
David Snow
 

barbara

Pioneer Founding member
I have heard nothing but good things about the University Hospital in Monterrey, Mexico. On the other hand, I have heard some controversy concerning Joanne Kurtzman who evidently does not seem to think any method other than what she does is safe or even worth trying.
 

shawntain

New member
interesting, barbara. the team from monterrey has been very nice and thorough in their correspondence if a bit slow getting back to me sometimes. they said they are now preparing a report on safety and outcomes from their department for parents' and their pediatricians to review, so i am awaiting that. seems like a good sign. what have you heard about them, what kinds of treatments? i know that the ALS organization recommends the private hospital in Monterrey for SC treatment.

the only abstract i have found on lumbar puncture/neuro-healing shows some efficacy but i have not seen it combined with the use of G-CSF. x-cell in cologne reports decent success with this method in treating CP kids, but how to verify?

Subarachnoid placement of stem cells in neurological disorders. (Functional improvements seen in 31% of patients)

On the other hand...risks:
Diagnostic and therapeutic implications of neurological complications following paediatric haematopoietic stem cell transplantation.


Hemophagocytic syndrome after hematopoietic stem cell transplantation: a prospective observational study.

still can't make up my mind, dithering a lot about this. anyone else have some relevant research? still sorting through journals but not enough work has been done, it seems.

thanks!
jenny
 

barbara

Pioneer Founding member
As something that has been discussed on this forum before, good luck getting any kind of verification from X-Cell. I remain ultra-cautious about this company and until someone that has had treatment there posts on this forum, I simply do not know of any success coming from there.

What other clinics have you contacted?
 
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