Monday, March 31, 2008

So many changes

We are still looking into all of our treatment options. We have added Hyperbaric Oxygen Treatments (HBOT) to the list -- just looking into it. I know there are lots of folks who have done it with their's still considered controversial as to it's effectiveness among the medical community, but I think if you speak to parents of children with Cerebral Palsy they will give you a give you a big thumbs up from their experiences. So, we spoke to our Neurologist about it and she gave me the name of a Pediatrician in Westchester who got into HBOT because her daughter had CP. I'll let you know how that call goes.

But biggest on our minds is the stem cell clinicals which should be getting done in our own country -- so that desperate, vulnerable parents don't have to schlep their beloved children to questionable places of the world to get a stem cell transfusion done. We are so bothered by this and have begun what we can only call a grass roots effort to try and get the proper information so we can begin the writing of letters and get this going before Amelia is Bat Mitzvah'd. We want the facts on donor cord blood transfusions, what are the ramifications, if any, etc...from there we want to contact our state officials and so on. We have the support of UCP, NYC as Nestor had a meeting with the Head of UCP, Ed Matthews while in LA. Hoorah!

*FYI: We have spoken to the folks at Duke and as of right now -- they will ONLY do donor stem cell transfusions on children with cancer, like Leukemia, because a round of chemotherapy has to be done after the transfusion. And obviously, they won't do chemotherapy on a healthy child. My question was...then why is it that donor stem cell transfusions are supposedly being done in Mexico and China without chemotherapy afterwards? I got a "no comment". I haven't gotten the answers I need to move forward. I asked our Neurologist who could only surmise that perhaps that's just what the FDA protocol is allowing at this point. Arghhh! So frustrating. It's like hitting your head against the wall -- many times! She offered to ask the docs who work in hemoglobin research for us. So now, here we are with our minds swimming and a big task ahead of us. We'll get it all together and I don't think it will be as vast as we are anticipating.

So what's new with our girl? Well, she is sitting like... a..., uh, professional sitter. It's true. She wobbles a little at times, but catches herself 97% of the time. Amelia will lean all the way forward or reach over yonder to get a toy, and then get herself back up. She will even vehemently shake her head NO and not topple over. It's so exciting!!!

Her big thing this moment is wanting to crawl. Amelia has pushed up into quadruped twice on her own without any prompting or help. And yesterday, she pushed back from her belly into sitting while playing with Nestor. She is getting so strong it's unbelievable! We've been putting her into the Creepster everyday for 30 minutes and she loves it -- when I take it out and show it to her she signs "give me". She's really moving nicely in it. Not your classic crawling, but getting herself from point A to point B like a champ.

And lastly, we've been thickening orange juice with "Thick It" (basically cornstarch) and Amelia loves it. We've been making it almost a custard consistency -- think the lemon in a meringue pie. She swallowed down a couple big (bigger than we're supposed to be giving her) spoonfuls today and yesterday. She had a look of shock on her face like she couldn't believe it. There wasn't any coughing or uncomfortable looking faces -- just surprise! It's really encouraging. Amelia's Speech Therapist and I were discussing that we would like to try thickening lots of other foods to that consistency because it seems to be what works for her.

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.

Tuesday, March 4, 2008

Coming into my own

Lately I've been searching for different ways to connect with others going thru what I am going thru each day. I am looking for a bigger community and I think I am on the right path so far. I've spent hours at the library and Barnes and Nobles looking thru all kinds of books. I have reached out to a Jewish organization called "Chai Life," we were hooked up with them thru our OT in LA and when we came home to NYC our case was transferred to their NY office. When we came back, I wasn't ready for what they had to offer and wasn't all that interested in knowing other families like mine. I guess there was part of me in denial that this was really the way this was going. Chai Life helps give a community and services to families with children with special needs -- I am still awaiting a call from my caseworker there...hmmm.

Anyway, I recently took a book called "Special Kids Need Special Parents" by Judith Loseff Lavin, out of the library. It's good..and lots of references in there have led me to other books, such as "When Bad Things Happen to Good People" by Rabbi Harold Kushner. Lavin refers to to Kushners book in the grief section saying "Rabbi Kushner believes that the bad things that happen in the world are not God's will. Bad things happen because nature is amoral and blind or because free choice allows some people to choose evil. When misfortune strikes, how you choose to deal with that misfortune is more important than analyzing why it happened." Kushner says "God's role is not making sure we get what we deserve, but giving us the grace, strength and resiliency to survive when things happen to us that we don't deserve, to me the proof of God is that ordinary people come up with extraordinary spiritual resources in the face of tragedy." I have read this passage over many times and just love it. It seems so true to me and so uplifting.

Like the poem "Welcome to Holland" by Emily Perl Kingsley (go to Nov '07 entry) says " must learn a whole new language. And you will meet a whole new group of people you would never have met."