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.