Wednesday, January 02, 2008

Update on Ryan Schnieder- Cord Blood Stem Cells for Cerebral Palsy

Anyone remember Ryan Schneider and his active mum Mary? I mentioned them in a very early blog entry and recently found an update on Ryan's condition in an interview with his mother, posted on their website promoting new treatments for children with neurobiological conditions. I also learned from the article that Mary is working to pass a bill promoting cord blood banking and advocating stem cell research.

The pictures of the family are very nice and Ryan does look like a happy and healthy child. I took an excerpt from the interview which I thought would be of interest to those parents who are considering storing their babies' cord blood stem cells. Mary explains why storing and using your own child's cord blood stem cells is the best option.


Question to Mary Schneider:
What do you say to other special-needs parents who want to know how they can try this same procedure for their children?

Answer:
At this point only children with cerebral palsy or similar brain injury, and who have their own cord blood banked at birth are candidates for this treatment.

In order to receive donated umbilical cord blood stem cells, a patient currently has to go through chemotherapy like that endured by cancer patients. Chemotherapy is likely to do significant harm to children, and so is not an option for children with stable neurological conditions like Ryan’s. So it has to be the patient’s own cord blood banked at birth, and not a sibling or other donated stem cells.

To date, seven more children have seen Dr. Kurtzberg. Their issues are all different (as a parent might imagine) and their results vary based upon their previous level of impairment and the viability of the stem cells used.

The common thread is that each child has seen some kind of improvement. Ryan’s results are more than I had hoped for, yet for all the other children there has been a quality of life change on some level. Some of the major improvements parents have reported are in the areas of strength and mobility in both upper and lower body; feeding and gastrointestinal issues; reduction or elimination of seizure activity; body temperature regulation; speech; tactile defensive issues and visual tracking abilities.





WHAT ARE THE CAUSES?

Often rather difficult to define depending on which part of the brain is damaged, but here are a few that I found online.

Causes before birth:
Infections of the mother while she is pregnant. These include German measles and shingles (herpes zoster).
Differences between the blood of mother and child (Rh incompatibility).
Problems of the mother, such as diabetes or toxemia of pregnancy.
Inherited. This is rare, but there is a 'familial spastic paraplegia'.
No cause can be found in about 30% of the children.

Causes around the time of birth:
Lack of oxygen (air) at birth. The baby does not breathe soon enough and becomes blue and limp. In some areas, misuse of hormones (oxytocics) to speed up birth narrows the blood vessels in the womb so much that the baby does not get enough oxygen. The baby is born blue and limp-with brain damage.
Birth injuries from difficult births. These are mostly large babies of mothers who are small or very young. The baby's head may be pushed out of shape, blood vessels torn, and the brain damaged.
Prematurity. Babies born before 9 months and who weigh under 2 kilos (5 pounds) are much more likely to have cerebral palsy. In rich countries, over half the cases of cerebral palsy happen in babies that are born early.

Causes after birth:
Very high fever due to infection or dehydration (water loss from diarrhea). It is more common in bottle-fed babies.
Brain infections (meningitis, encephalitis). There are many causes, including malaria and tuberculosis.
Head injuries.
Lack of oxygen from drowning, gas poisoning, or other causes.
Poisoning from lead glazes on pottery, pesticides sprayed on crops, and other poisons.
Bleeding or blood clots in the brain, often from unknown cause.
Brain tumors. These cause progressive brain damage in which the signs are similar to cerebral palsy but steadily get worse.



Well done Mary for tirelessly bringing stem cell application to the front of everyone's minds and reminding them that the patient should always be first and never to fear a logical next step even though it may be new.

9 comments:

Madhur said...

Hi,

I am from India and am planning to start a Stem Cell Bank here with a couple of my friends (one of whom is currently the CTO at a major private cord blood bank in India).

We believe it makes good business sense since India offers tremendous potential considering its huge population base with large disposable income and very low penetration of this service here.

We are searching for experienced partners and i came across this blog. It seems sincere and genuine.

If you are interested in pursuing a dialogue with us for a partnership in India, plz contact me at lifescapes.india@gmail.com

regards,

Madhur Ramani

Tiffany said...

I am currently searching to see if I can find any one, in any country, that is trying sibling cord blood for CP. If you know of anyone please let me know. Thank you!!

Kristen Cruz said...

I am also searching for anyone who is doing sibling cord blood infusions to help with CP. My son has CP and we banked my daughters cord blood in hope that we may use it for him. i know that Duke University is doing cord blood infusions now, but only using the child's own cord blood. They are currently working on a safe way to use sibling cord blood. Please contact me if anyone has any info on sibling cord blood infusions. My son is in desperate need.

My email: kristenaubrey@msn.com

Candice said...

Please I am also searching to use my daughters cord blood for my five year old son with severe brain damage. I have been looking to travel to Costa Rica as they are doing studies but would prefer to stay in the United States if possible.

StemLife said...

Hello Parents,

Thanks for leaving your messages on our blog and I think that people are viewing them from all over the world.

I've been thinking and trying to understand why the transplant is limited only to autologous at the moment and why the doctors would not wish to initiate sibling cord blood infusions in the event that the stem cells or even blood type is a match.

From a very very lay point of view, cord blood is in fact "blood" and would constitute a "blood transfusion". So if a person needed say 100 cc's of say type A blood and the only available source is a type A blood obtained from an umbilical cord, would you not infuse it? Hmm....

If one were to go one step further and say that if at least the blood type was a match and the stem cells were also a match, what would the real risks be to a transfusion like that?

I guess the real question is one of risks versus benefits (common theme in this blog!) and what parents need to moderate is also their expectations of the benefits.

Let's put up a hypothetical scenario: if a family has 2 children, where one has CP and the other is presently fine. The one that is fine has cord blood stem cells stored, but there is a history of say cancers such as leukemia within the family. When do you decide that it is appropriate to use the baby's cord blood stem cells? For CP which is presently of an unknown outcome, or to save it for a rainy day for the child that may now be fine but may need it later in life?

There are no right and wrong answers, only choices and decisions depending on the situation within the family, but it certainly twists doctors and ethicists around in knots. As a parent or a patient however, most of us will take whatever we can get.

I have some thoughts on this topic but I'll post them on this blog later.

Anonymous said...

I also have son with CP who is four. If there was a possibility that a siblings cord blood could help his life in a small way I am all for it. And would be willing to use it in a sibling trial if Duke University ever decided to try it. He was delivered at 27 weeks by emergency C-section so the option of saving his cord blood was not presented. He didn't ask for this lifestyle and it's not fair that the middle class don't have more options for medical treatment because insurance companies control the strings.

Anonymous said...

We have a one year old son who was recently diagnosed with Cerebral Palsy. Can I ask why you have said that "In order to receive donated umbilical cord blood stem cells, a patient currently has to go through chemotherapy" ?

StemLife said...

Hello,

The statement that you saw was a quote from Mary Schnieder and should probably be read in context of the entire interview.

What she meant was that the most common method for using cord blood stem cell transplantation is in the context of leukemia and other blood related disorders.

A typical (and very simplified) scenario would be:

1. Child A has stem cell related blood disorder originating in the bone marrow.

2. Child B (Child A's sibling) has a cord blood stem cell unit which is a match to Child A.

3. The transplant physician will provide chemotherapy to Child A, which destroys the bone marrow stem cells causing the disorder. Child A now requires new stem cells.

4. Child B's stem cell unit is infused into Child A which then 'engrafts' into Child A's bone marrow.

5. Child A now has a healthy, functioning bone marrow from Child B.

Analogy
Think of a stem cell transplant like this:

The bone is a factory housing and within it are millions of important equipment which churn out important products for use.

However, the products are faulty and the reason is because of malfunctioning equipment and nothing can be done to repair it internally.

The only way to produce non-faulty products is by throwing out all the present equipment in the factory and replacing it with an entire brand new set*.

In this analogy, the bone marrow stem cells are the equipment and the products are the red blood cells and the immune system. Stem cell transplantation has been performed in this manner for these conditions for the last five decades.

*brand new set:

A) may be a cord blood unit from the same child stored earlier before the condition manifested;

B) may be from a stem cell matched sibling

C) may be cord blood or peripheral blood stem cells from a matched unknown donor

**Child A's blood type and system would now be the same as Child B (blood cells are a product of the factory)
---------------------------

In the case of cerebral palsy -the condition is one which involves the brain & nervous system- and is not a blood or immune disorder per say, so there is nothing wrong with the child's own bone marrow stem cells(and therefore should not require chemotherapy).

However, physicians would prefer to err on the side of caution (stem cells from other sources may result in greater risk of rejection by the patient's body, or infectious agents from unknown donors) and presently, infusions of stem cells for CP are limited to the child's own unit.

Cord blood stem cells are an available source to the child, provided that the unit was banked at the time of birth.

As I understand, the cord blood stem cells are administered intravenously (into the veins), there is no chemotherapy involved and certainly no surgery either.

Side effects are thought to be minimal or non-existent with the child's own stem cell unit and the procedure is completed in less than half an hour.

Please note that the above does not constitute a medical recommendation nor advice.

Did you manage to bank your child's cord blood stem cells at the time of birth? If you did and live in Asia, do drop us a line.

Hope this helps clarify the statement.

Yours sincerely,
Sharon

Dr. Kostas I.P. said...
This comment has been removed by the author.