Monday, March 17, 2008

What to do?

So, by now I'm sure that everyone has heard or watched the story that was on the Today show with the little boy, who has CP and had a transfusion of his own cord blood stem cells. Within 5 days he was walking and talking, of which he had not done previously. Nestor spoke to the woman down there who is doing the transfusions at Duke University. She said they will ONLY use the person's own cord blood -- absolutely no donor cord blood, from a sibling, relative, friend, etc. Big fat NO!

So Nestor and I are now in an obsessive frenzy to get Amelia on the stem cell train. Of course, we didn't bank Amelia's cord blood. Who knew? I have my cousins Jenn and Barbara and great friend, Veronica who are all about to give birth. Can I show up at their respective delivery rooms with a ziploc baggie and cooler of dry ice?

Last week I got on the horn to our Neurologist, Dr. LaJoie out of NYU who informed me that she had a family out of Long Island who had taken their daughter to Mexico and had had the transfusion done there with donor cord blood stem cells. The clinic is outside of San Diego, but because the transfusion isn't FDA approved, you are taken just over the border to a hospital in Tijuana for the actual transfusion. Nestor and I had a conference all with the Mom of the girl. She told us that her daughter has CP, was very visually impaired and had been having very serious seizures, to the point that she thought they were going to lose her several times. They had to do something, so she researched the clinic, the drs. involved and felt comfortable enough to take her daughter there. Since the transfusion, her daughter hasn't seized (a couple small ones when she's gotten very sick), is off her meds, can now take steps in her walker and is now visually tracking. She attributes all of this to the stem cell transfusion.

The problem is...there's lots of really bad press swirling around this little operation out of southern CA. If you google the drs. there, David Steenblock and Fernando Ramirez Del Rio, you'll pull up there sites and then all the bad press surrounding them. But the biggest red flag came up when I spoke with a contact at the Cord Blood Registry (who was given to me thru the wonderful OB/GYN who delivered Amelia in LA, Dr. Peter Weiss), Dr. David Harris, who has been working with the docs at Duke. He gave me a list of questions for the clinic as follows:

1) Where is the donor cord blood coming from? Get the name and accreditation number of the bank. (The clinic in CA told me they could not divulge that information but she could assure me that it was from a University in the US and met the AABB certification standards, having been tested for pathology, bacteria and virus's -- uh, not sure I'm comfortable with that!)
2) Where did they come up with the amount of stem cells they will tranfuse at one time? (the clinic in CA told me the max they would do for a 2 year old is 6 million stem cells, Dr. Harris told me that the 2 year old at Duke received 100 million of his own stem cells at once)
3) If this process is being done under the proper protocol, in other words, using before and after assessments and quantitating your findings, it shouldn't be too hard to get FDA approval. Why aren't they trying to get their FDA approval, at least on a case to case basis?
4) The clinic in CA told me that they have a 75-80% success rate with Cerebral Palsy patients. Dr. Harris questions why they have NEVER published their findings with success like that? He has never seen anything written by them -- and he assured me that he never misses an article. (The clinic in CA emailed me an article written by their Dr. Payne which was a hypothetical...A HYPOTHETICAL? Isn't that what we used to write for our science projects in 7th grade??!!??, that's ALL they've published on their findings?)

Then, to deepen our skepticism, my sister's friend knows the Dr. at Johns Hopkins who started stem cell therapy research 20 years ago, Dr. Civin. We emailed all the links that had been sent to me thru the clinic in CA and he responded by saying that the docs in CA sound like quacks. Case closed.

However, there is a clinic in Costa Rica who extracts the stem cells from the patient and reinjects them. It doesn't say whether or not they've been working with children, so that will be more research. There are also places in Switzerland and China. Our big hope is to try and find someone here, in the states, who wants to start a study here and needs a precious little girl with big brown eyes and brown curly hair!

The good news is -- there is so much hope now in an arena that is just getting started. Hopefully we'll be able to find help sooner rather than later. Amelia deserves the best chance we can give does every person who can be helped by these elusive little stem cells.


Vanessa said...

I have pondered those thoughts a lot. I am going to try to figure out a way for those stem cell places to let me transfuse our next kids stem cells instead of their own..i think that would be the best thing...but it is going to take a lot of blood, sweat and tears to get it all under way. Also, those other stem cell places give the cells thru the abdomen, the little boy received them by IV and that is much more readily absorbed. I'm there with you though!

Anonymous said...

I just stumbled on this blog and i might be able to assist you in your search regarding stem cells. I have been working with parents for a few years to help them sort out the scams from the viable treatment providers. There is a yahoo group which I operate called BIA4KIDS and many of the parents on it have taken thier kids to Mexico and/or China for stem cells. It is a safe palce to talk about these types of alternate treatments and we have a great database with tons of info on stem cells. You should also check as many kids are going for stem cells via China with Beike bio tech. Anyway you can email me at

Dani said...

oh my what to do! we have been on the stem cell wagon since we first heard of it a few months ago! we were so excited when we read about it we couldn't sleep that night. i am so confused on the yay's and nay's of it all! thanks for posting all that info on your blog it is very helpful i am also a member of that BIA4KIDS yahoo group and lots of parents on there have written their experience with china and mexico and i have only read good things on there so far! what to do, what to do!

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