Yesterday we visited the neurosciences clinic at Primary Children's. Our regular Neurologist at Primary's referred us there when we asked her how to find out current and accurate information on the use of umbilical cord blood in treating cerebral palsy.
We told them what we were coming for when we made the appointment, but apparently the Doc didn't get the memo. He was a real nice guy, and took his time in asking all the questions about MK's history, carefully looking up lab reports, and test results on the computer. But he looked like a deer in the headlights when we told him why we'd come. He said that he was just a resident working under Dr. So and So, and that he would run it by him. We waited in the room after that probably another half and hour or so and joked that they were probably 'googling' about cord blood so they'd have something to say to us. The sad thing is, I think we were right. Both doctors came back and talked in circles just restating MK's condition to us and telling us what we already told them, that it seems to be more of an issue of some sort of brain damage rather than a genetic condition....yada yada yada. They really had nothing to say, nor seemed to know anything about cord blood. They gave us a packet they printed out from a web site. (I had to giggle inside myself.)
I got better information about it last week when MK had a check up from another one of her doctors at primary's. I casually mentioned it while we were there. That doctor had just returned from a conference on the subject. She said that she has had numerous patients (mostly with spinal cord injuries rather than cp) who have been interested in cord blood, and many who have even tried to use it. According to her experience, and the information she'd learned at the conference - There is definitely potential there. But the technology just isn't totally ready yet. She said she felt that it would be worth while to harvest and store the blood, but that it's difficult to even put a time frame on how long we might have to hold on to it before the technology is ready. Maybe 10-20 years, who knows?! But she also cautioned - whatever you do - don't go to China or Mexico. She said she'd had patients who had done that, and while she didn't elaborate, she strongly and clearly implied that their efforts were a waste.
I think at this point, we are leaning towards harvesting and storing, but not totally sold yet. We'll be looking into the different companies that do it to check on prices and such. I'll keep you all posted on that.
A big thank you to Ann who left a comment with all the links to blogs and such about it. I've been particularly interested in following Cady's blog, who recieved cord blood for her CP as part of a study done at Duke University. I'll keep watching her progress. Thank you!
In the meantime, it's good to get some updates from some of you. I'm glad we all seem to be hanging in there. Good Luck with Halloween all!