Duke University

Sasori

New member
Hi there, just starting this thread on behalf of my new friend Donna in Ausy. She is hoping to go to Duke University to have her daughter who has CP, treated with her sibling's cord blood which she has stored. They are currently checking to see if it is a match.
The question is: Do Duke University to treatments using sibling matched blood?
Anybody else have anything to share regarding Duke University?
Donna has already received the standard 'scare you off Mexico and donated stem cells' email from Mary Schneider.... :)

Thanks for your help team!
 

Azriel

New member
Fingers crossed

I'm hoping this is an option given we are planning another baby and if this was an option for Oscar I would be over the moon.

I'd be really interested to find out more.

Merryn
 

paigie

New member
from the horses mouth.

Hi everyone, well I have the news from Duke Uni, They can not at this time us Sibling cord blood, as for some reason they say they would have to use hi levels of chemotherapy for the stem cells to absorb.:confused:
 
Duke University...

Who is Mary Schneider? What is her vested interest in preventing people from using human stem cells derived from umbilical cord blood?
David Snow
 

Sasori

New member
Mary Schneider

She is the woman who 'started it all' - her kid was finally diagnosed with CP and she remembered she had banked cord blood so searched for ages to find doc who would reinfuse, Joanne Kutzberg from Duke said yes, it worked, and so hallelujah that is how it must be done.
Duke University beleive the only way to give umbilical stem cells is as a whole ie with all the other blood product, which is why they think they have to give it after chemo to kill the recipients immune system to stop it rejecting the blood/cells. The way Ramirez and many others are doing it is to remove everything apart from the stem cells themselves which do not cause a reaction, plus umbilical cells have not built an immune system to react against. They also only use O type to be absolutely safe and have never had a case of host vs graft disease.
Sorry Paigie, I did suspect that would be the case. But plenty of us have used donated and all is well. Welcome to the club.
 

paigie

New member
Thanks so much, I was actually going the way of donated thanks to you. I mean if they are gonna strip my sons cord blood to nothing why bother using it (if that makes sense) might as well leave it whole for him just in case he needs it one day.

This is a snippet of the letter that we received from duke uni.

I am sorry to hear about your child's diagnosis of CP. We are infusing patients with CP with an autoreinfusion of their own banked cord blood to see if it will help lessen the symptoms of the diagnosis. We cannot use a sibling's cord as we would have to give high doses of chemotherapy in order for the sibling cord to engraft or take. Since we do not know if this helps, we cannot at this time put a child through the risks of chemotherapy.

This would be cool forwarded to the dr in mexico and the dr in peru, to see what they reacon on this.?:confused:
 

Kaci's Mom

New member
Thanks so much, I was actually going the way of donated thanks to you. I mean if they are gonna strip my sons cord blood to nothing why bother using it (if that makes sense) might as well leave it whole for him just in case he needs it one day.

This is a snippet of the letter that we received from duke uni.

I am sorry to hear about your child's diagnosis of CP. We are infusing patients with CP with an autoreinfusion of their own banked cord blood to see if it will help lessen the symptoms of the diagnosis. We cannot use a sibling's cord as we would have to give high doses of chemotherapy in order for the sibling cord to engraft or take. Since we do not know if this helps, we cannot at this time put a child through the risks of chemotherapy.

This would be cool forwarded to the dr in mexico and the dr in peru, to see what they reacon on this.?:confused:
I think the Drs in Mexico and Peru would laugh and say "The FDA needs to get off its high horse and realize the world of stem cells is progressing- whether the United States is in or not" If we haven't done it, it must not work (or be possible).
 

hlichten

Super Moderator
I would think that they would need (possibly) high doses of prednisone to prevent graft-vs-host disease and/or rejection, but frankly I don't understand why high doses of chemotherapy would be needed.

If the siblings blood matched, I can't see why anything would be needed.
 
cord blood matching

When cord blood is used for leukemia and other blood related disorders. The immune system of the patient is destroyed ahead of time by radiation and maybe chemo. Duke is using this model of transplantation, probably. The stem cells from the donor cord blood would have to replace the immune system. This is very serious stuff for sure. This is obviously not the model for stem cells derived from umbilical cord blood where no blood is transplanted.
 

barbara

Pioneer Founding member
Somewhere on this forum, we have already discussed what is going on at Duke University. One of the doctors or researchers who participate on our forum was asked their opinion, and contrary to Mary Schneider, who appears to be an expert on the subject, the opinion was very negative on the chemotherapy being done on the children involved in the Duke study. I will try to find where this particular post is tucked away, as I do remember it quite well. I have to go to work now, but will look for it when I get home unless someone else wants to go searching.
 

barbara

Pioneer Founding member
Here's the post I was thinking of. Since the name Ryan Schneider is mentioned, I think this may be the doctor at Duke. Correct me if I am wrong.


Hi,

I dont know who to ask this but still... A number of CP children treated by Dr. Joanne Kurtzberg are nearly 'cured'. This was when they had their own cord blood. What I fail to understand is why are those who use donated cord blood not show even half that improvement though the quantity given to them can be more than Dr. Joanne used from a single cord blood unit? Does the potency of donated cord blood reduce by the process with which it becomes usable on others? Every CP mom and dad want their children to improve as much as Dallas Hextell, Chloe Levine and Ryan Schneider did! Yet multiple vials of cord blood dont have the same effect. Dr. Rader, Ramirez, Finerman, Cell Medicine - none of them has been able to come up with what Dr. Joanne has done.

Dr. Joanne injects 10 - 50 million cells per kg of body weight. Thus a 10 kg baby would get approx 500 miilion cells (including mononuclear cells). This quantity has been specified to me by Dr. Joanne herself.




Dr. Feinerman's response:


DEAR BARBARA:
I HEAR OVER AND OVER AGAIN HOW VARIOUS DOCTORS
CLAIM VERY LARGE NUMBERS OF CELLS THAT THEY ADMINISTER.
THE NUMBER OF CELLS IN A SINGLE CORD UNIT THAT WAS SAVED FOR AN INFANT IS ACTUALLY NOT VERY HIGH. I AM HAPPY THAT THE CHILDREN SHE NAMES IMPROVED. HOWEVER, I STILL CONTEND THAT THE MOST IMPORTANT THING IS TO GET FIRST OF ALL IMMORTALIZED NEURON BRAIN STEM CELLS THAT ARE SPECIFIC AND MIXED WITH BRAIN DERIVED NEUROTRPOPHIC FACTOR; NERVE GROWTH FACTOR; NEUROTRPHINS; TRANSFORMING GROWTH FACTOR; GLIAL FACTOR AND THAT THEY MUST BE ADMINISTERED INTO THE CENTRAL NERVOUS SYSTEM.
AT THE PRESENT TIME I ACTUALLY THINK THAT THE BEST TREATMENT FOR CEREBRAL PALSY PATIENTS OF ANY AGE IS THE ADMINISTRATION OF IMMORTALIZED NEURON STEM CELLS; NERVE GROWTH FACTORS MENTIONED ABOVE AND USING INDUCED PLURIPOTENT STEM CELLS FROM THE PATIENT'S PERIPHERAL BLOOD (which is most important highly functional) OR IPC FROM CORD BLOOD FROM INFANCY THAT IS THEN ADMINISTERED INTO THE CENTRAL NERVOUS SYSTEM. READ TIME MAGAZINE FEBRUARY 9th ARTICLE OR LIFE EXTENSION ARTICLE ARTICLE NOVEMBER 2008 ISSUE.
HOW DO INFANT CORD STEM CELLS GIVEN INTRAVENOUSLY PASS THROUGH THE BLOOD-BRAIN BARRIER? I HAVE BEEN TREATING CEREBRAL PALSY CHILDREN FOR FORTY FIVE YEARS. I ALSO OBJECT TO MY NAME BEING COMPARED TO THE LIST SHE GAVE YOU. ALSO HOW DOES SHE KNOW WHAT MY RESULTS ARE? THE AGE OF THE CHILD OR IN SOME CASES TEEN-AGER OR EVEN ADULT WITH CEREBRAL PALSY IS A FACTOR. ALSO SOME HAVE BRAIN DAMAGE THAT ONLY AFFECTS THEIR MOTOR NEURONS WHEREAS AS OTHERS HAVE DAMAGE THAT AFFECTS THEIR INTELLECT, HEARING, VISION, COMPREHENSION. ONE HAS TO COMPARE APPLES WITH APPLES.
THE ONE WONDERFUL FACT WE NOW KNOW IS THE NEUROPLASTICITY OF THE BRAIN; THAT IT IS MALLEABLE AND CAN BE REPAIRED. IN ADDITION TO NEURON STEM CELLS AND NERVE GROWTH FACTORS THE ADMINISTRATION INTO THE CENTRAL NERVOUS SYSTEM PATIENTS NEED EXTENSIVE PHYSICAL REHABILITATION AND THE USE OF SPECIALIZED REHABILITATION PROGRAMS TO IMPROVE THEIR AUDITORY AND VISUAL MEMORY.
I REALIZE THERE IS LOTS OF HYPE OUT THERE; THAT ESPECIALLY PARENTS ARE INTENSELY EMOTIONALLY INVOLVED WHEN IT COMES TO THEIR CHILDREN WITH SERIOUS DISABILITIES. I KNOW HOW PASSIONATE THEY CAN BE. THERE IS LOTS FOR ALL OF TO LEARN AND I THINK WE ARE JUST AT THE BEGINNING.
 

paigie

New member
Hi there thanks for that. I have already bore the brunt of this mary schnieder. Not a very nice email from her at all. I didn't even approach her, she went via the private cord bank company in new zealand. But thanks to this forum and a lovely lady called janine i am excited again. :D I agree i dont like the fact that they have chemo coupled with the cord blood. I saw many people in my family have chemo and it was nasty. I looked at the dr stroke site it looks good, but tell me he doesn't do the stem cell treatment for cp yet? tell me if im wrong, so would you go for the dr ramiriz stem cells then onto him for hbot and therapies.????:confused:
 

Sasori

New member
Chemo etc at Duke

It's my understanding that Duke do not do any chemo, because they only use the child's own cord blood.
They do not do any treatments/trials/experiments with donated stuff.
However, as was pointed out earlier, they seem to assume that should donated stem cells be used, that the immune system would have to be wiped out with chemo like for treating leukemia, to stop host vs graft disease.
And of course this freaks people out!
Our daughter had a treatment with donated stem cells, with no chemo, and the most obvious proof to us of something 'happening' is that after a steady decline in her weight for at least 8 months prior to treatment, she immediately began gaining weight.
ie. she had been loosing about 200g every 2 - 3 weeks before treatement. Within the first 3 weeks of treatment she had gained 360g. We weren't really feeding her more, and if anything her meal times were pretty neglected while we were in the States, but still the weight came on. Now, 4 months post treatment, she has gained over 1kg, even tho she's been having problems with her adenoids (unrelated to treatment lol) causing her to throw up, she continued to put on weight. It's quite amazing, and if that were the only difference, we'd be satisfied. We're going back again.
 

Vaibhav

New member
Cord Blood for CP

Hi,

I had posted this query a few months back. I have been corresponding with Dr. Joanne since I have a 2 year old son suffering from CP and we don't have his cord blood saved. The quantity is also correct for sure. Dr. Joanne replied " ficolled cord blood - The cord blood is thawed, washed in dextran/albumin (Rubinstein et al 1998) and infused intravenously. a typical cord blood contains more than a billion cells overall with about 70% being mononuclear cells. The CD34 cells vary in our transplants, generally from 1-4 million total.
"


all CP parents - do check out the 'Pediatric Lokomat'

Thanks

Vaibhav
 

Cynthia

New member
Mary's the last person I would ask

You know this Mary Scheider has no business telling anyone to stay away from Mexico or any other place. Has she been there? Has she met the doctors or other patients? She was fortunate enough to be given a platform and she's wasted it. If Duke turned her down she would have been the first one going to Mexico & hailing the procedure from outside the USA. Call Duke and force them to take your child or form a class action lawsuit for discriminating against them if they don't take your kid.
 

twinboys

New member
Ethan's story so far...

I have twin boys Ethan and Owen born June08. Ethan had a seisure on his second day of life but was fine until 10 months when he was diagnosed with mild CP due to stiffness on his right side. He has been getting home therapy and doing pretty well.

I started looking into what this stem cell therapy is I have been seeing and I was amazed at what I found. We saved the boys cord blood so Duke University was an option for us. I contacted Duke to see what we had to do and the cost. I had the cord blood bank send Ethan's report to Duke and his stem cell count in his cord blood was low which was not uncommon in twins. So here we think we can do this and then another let down. She asked his weight and turns out since he is still young and small there is enough cells to do the therapy. We should be getting our definate date tomorrow and doing the procedure no later than end of October. Another point of possible good news after talking to the lady in the insurance billing dept at Duke said 80% of insurance companies pay for this because of the way they bill it.

Still no guarantees this will work but its a chance for an easier life for Ethan. Has anyone else had this therapy at Duke and what can we expect? Thanks.

~Karlene :D
 
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