Cord Blood Banking

This is an issue which I believe is relevant to everyone, not just families with special needs kids. Please let me know if you guys have any questions or want me to clarify anything.

As soon as I found out I was pregnant I instantly knew I wanted to save our daughter’s cord blood. Here are the reasons why:

* The possibility of using Belle’s cord blood to help Nathan
* For Belle to have her cord blood available for her in case of future issues

Other countries have made lots of progress in understanding stem cells and in developing therapies for use with stem cells. But the US was very far behind because of Bush’s ban on stem cell research. Since Obama’s election, stem cell research is speeding ahead. Even though right now there aren’t many applications for stem cells, I know it’s just a matter of time until many are developed. What scientists and doctors know about stem cells thus far is just too promising for this treatment modality not to be explored in greater depth.

I believe it’s only a matter of time until stem cell therapy is being actively used in many aspects of healing. For this reason, I thought it was essential to save Belle’s cord blood, as it might benefit both her and Nathan in the future.

Before Belle’s birth I did quite a lot of research and narrowed my choices down to 2: Viacord and Cord Blood Registry. My criteria for choosing these included the number of years in business, the number of successful transplants, whether they’re licensed and/or registered with the FDA, how the cord blood is stored and accessed, whether the cord blood is insured, and a few more factors. I decided to leave price out of it as I figured this wasn’t an area where saving a few bucks would be worth it. Plus they all have payment plans so when it came down to monthly payments the difference wasn’t too great.

I decided to call Duke University as they have the only trial with cord blood for Cerebral Palsy approved in the US thus far to ask about their opinion. I spoke with someone from their staff and they said they can’t give specific recommendations, but in general, either ViaCord or CBR would be fine and they’ve had success with stem cell transplants with cord blood stored at both banks.

Initially I chose CBR for the following reasons:

- They are now saving cord tissue as well as cord blood. The tissue has a higher concentration of mesenchymal stem cells, which are the ones used for regenerative medicine. There is an additional fee to store the cord tissue.

- They recently came up with a new collection kit that saves more stem cells.

- They were chosen to be the only bank to be associated with a new FDA approved stem cell study:

- They have a Parent program where other families get credit if you use their coupon code, plus they offer a nice discount of $250, reducing the total first year cost to $1900.

When I was about to sign the paper work with them, I got in touch with another parent of a child with Cerebral Palsy who told me about LifeBankUSA.

LifeBankUSA is the only cord blood storage facility that has the technology to also store blood from the placenta. I spoke with a couple of their representatives and did extensive research online about the viability and amount of stem cells available in the placenta. What I discovered was that the placenta DOES contain many viable stem cells, and that it contains a greater concentration of CD34+ stem cells, which are the key cells needed for transplants. LifeBankUSA is the only company with the technology to extract and save the cells from the placenta.

There is a greater cost for this service but I figured it would be worth it, as my plan is to hopefully use 1/2 of Belle’s cord blood for Nathan, and save the other 1/2 for her. So the more we can get, the better.

In the end I chose LifeBank for the following reasons:

- Greater concentration of stem cells in the Placenta
- They have been in business for 12 years
- They are owned by a large pharmaceutical corporation which gives them financial backing (which ensures they won’t shut down and thus the cord blood will continue to be well preserved).
- They save the blood in bags, which means I can split the blood to get some for Nathan and save some for Belle (not all facilities store them separately, some store them in a way where if you take it out, you have to take it all out).
- A large number of independent successful transplants
- They spend a lot of money and energy on research. The mom that I talked to has been talking to some of their scientists and I know for a fact they are trying to find ways to use cord blood for siblings.
- They also have a parent referral program, where every friend that you refer that saves their child’s cord blood with LifeBankUSA will give you a free year of storage.

I also really liked the sales rep that I spoke with, and felt that she was the least pushy of all the reps I spoke with from various companies. When I feel that I am part of a sales process it makes me a bit weary, so it was refreshing to speak to a company where the reps aren’t pushy at all.

Our experience with LifeBankUSA was great. They picked up the blood in a timely manner and everything was flawless. Our report stated that we collected 791,000,000 stem cells. As the average cord blood collection contains 725,000,000 cells, we obtained an additional 66,000,000 from the placenta. They also explained that of the 66 million cells, there is a much greater concentration of the CD34+ stem cells in the placenta which is the key stem in a transplant. They are generating a report for me of exactly how many of each cell type we collected, and I will write a post about that when I receive it. They are also doing a study to match Nathan and Belle’s blood to determine their level of compatibility which will give us further information about the viability of a future transplant.

The obvious question is then – how close are we to being able to use sibling cord blood to help children with CP? The unfortunate answer is that we are still a few years ahead. The mom who told me about LifeBank recently attended a stem cell conference and talked with all of the “key” players in the stem cell industry. She spoke with the Dr. from Duke who has been conducting a trial, she spokes with a doctor from Mexico who just finished a stem cell trial, and many other leaders in the industry. All of them mentioned that they are researching and going through the “due process” to be able to use sibling cord blood to help kids with CP, but they don’t have anything ready yet and don’t expect to for a few more years.

Since facilities in other countries already have the technology, I know it’s only a matter of time until these treatments are available in the USA.

I believe stem cells have such great potential for health enhancement. And the wonderful news is that it really IS just a matter of time until they become a standard part of our Western medicine. At the moment the cord blood banks advertise them for issues such as cancer and other related diseases, but what I have learned about stem cells is that they can help in so many ways, at the very least, they can be used for health improvement and regeneration!

Right now, however, the only alternative for kids with CP who didn’t save their cord blood is to go to another country to use cord blood from other sources. There is a facility in Germany that uses the child’s own stem cells extracted from the bone marrow. The only issue is that these are hematopoietic stem cells – stem cells that create blood – so it is still not know whether these blood producing stem cells can help in the creation of neuronal cells. The X-cell center in Germany claims they have a high success rate, however this needs to be verified by a controlled trial here in the USA (currently there is one in Mexico that is in the process of computing their results).

To summarize: If you are considering whether you should bank your child’s cord blood – spend the time doing the research so you can understand what stem cells are and their potential. If you already know you want to save your child’s cord blood and don’t know what bank to use – research ViaCord, Cord Blood Registry, and LifeBankUsa. If you want to save more cells, I’d suggest using LifeBankUSA and saving the blood from the placenta.

For further research and a new post (coming soon): Baby Teeth Banking.

It’s about the little things

This is a fabulous video. This is a treatment we’ve considered for Nathan but, as much as we’d like to, we can’t afford to do everything. So for this year we are not planning any stem cell treatments.

I am so happy for these boys, for the benefits they gained from the treatment, and for their parents for making the effort!

Feeling grateful

Even though I didn’t really do the whole “thanksgiving” thing, being by myself here in Chile, I’ve been feeling quite thanful lately. While I’m typing this post, Nathan is happily asleep and Lucky is going wild playing with his favorite toy, an elmo doll. I think this puppy was really meant to come to us – he LOVES elmo, just like Nathan. And talking about this puppy…he’s truly an amazing little dog. He’s now potty trained – in 2 days. Yes, I mean that. Day 1 with Lucky was a nightmare, he pooped and peed everywhere. Day 2 he only peed everywhere, no poop. Day 3 (today), he holds his pee and poo until I take him outside. I’m blown away by how smart he is! He’s already learned to walk on a leash and if I take the leash off, he follows me as if he did have the leash on. He’s just amazing! I guess it’s about survival of the fittest – for him to have survived out on the streets as a tiny baby, he must be one smart little dog. I’m feeling quite grateful that I was led to find him, he’s been a lot of fun to have around.

Talking about grateful…Mr. Nathan has been really blowing me away the last couple of days. His head control is SO MUCH BETTER! Today we went on a date, and he took me to watch Planet 51. I held him on my lap and was amazed that he spent most of the movie holding up his trunk and head quite well! His trunk sorta flops over a bit, he still can’t really hold his back straight, but it’s such an improvement! And his head was mostly straight through the whole movie. Then he took me to dinner at Tony Roma’s and after he drank a whole glass of juice and ate some chicken soup, I gave him some spoons and he started playing with them!

Talk about playing…Nathan’s never had much of an interest in playing. Over the years I’ve tried a million toys and a million different ways of getting him interest in playing, with no success. He gets bored in seconds. Not so with books – he can “read” books for hours – but using his body to play has always been distasteful to him. Until now!

Today we spent almost an hour on his playmat just playing. First I had hi in a baby gym and he was reaching and grabbing for the toys. He was even kicking the toy at his feet, which he’s never done before! Then we played peek-a-boo with cloths – I would cover him with them, and he would bat his hands and wiggle and kick until he uncovered his face. Then he prop-sat and read several books with me – he must’ve lasted about 10 minutes prop sitting!!! Then we played a “turning” game – I would help him turn to one side, then I would move over and make him roll to his back. I know this is just a tiny milinchstone – rolling from his side to his back – but it’s something he couldn’t do before! He can roll from his tummy to his back, but he can’t roll from his back to his tummy. So the fact that he’s rolling from the sides to his back is a step in the right direction. Now if I can get him to learn to roll from his back to his tummy, he may be able to start moving by rolling places! So I’m excited by this milinchstone. Then he played a matching game with me – matching the head of farm animals with the rest of their bodies – which he did almost 100% correct every time! Then we just hung out some more and talked and read and he touched his toys and played with the cloths and it was a lot of fun for both of us. I know this may seem minor but for me, it’s incredibly massively huge. It shows that his brain is maturing! He is showing an interest in toys, in using his body, in exploring with his body and mind. Amazing!

So I am grateful. I am grateful to have found CME (I should clarify – I am grateful that Lourdes’ family made it impossible for us not to try CME – so in reality I’m grateful for the Ives/Lourenko’s). I am grateful that Nathan has the chance to work with Ramon. I am grateful that he had stem cells a month before we came (I think stem cells are contributing to his maturation, combined with CME). I am grateful for the things I learned regarding nutrition and that he is so great about eating everything we give him. I am grateful that we found Lucky. I am grateful to be sitting here watching Lucky romp around the house with Elmo while Nathan sleeps peacefully after a fun, fulfilling day.

P.S – sorry I didn’t add photos or videos with this post – I forgot to charge my camera battery – I’ll charge it tonight and get him on camera tomorrow, promise!

FDA Approves test to Inject Embryonic Stem Cells into Humans

The federal government has approved the first study by a company that will use human embryonic stem cells injected into a human.

The Geron corporation announce the approval today. The therapy used in the study is designed to treat spinal cord injuries by injecting stem cells — which are able to transform into the many different types of cells we need in our bodies — directly into the patients’ spinal cords.

The U.S. Food and Drug Administration (FDA) granted clearance of the company’s application for the clinical trial of GRNOPC1 in patients with acute spinal cord injury.

Click here to read more

Stem Cells and Peace

I have more photos from our trip:

These are the photos that I took while we were in Dominican Republic for Nathan’s 2nd stem cell treatment. The hotel was all inclusive with lots of entertainment and activities and we had such a wonderful time.

Something finally shifted for me. After getting close to a nervous breakdown I realized that I have to take care of myself, slow things down, and remember what’s important – which ultimately, is Nathan’s happiness.

During our time in DR I really worked on relaxing (I know I know what a contradiction), I worked on remember what’s important to me, I worked on remembering who I am, who I have always been.

And the most important realization I’ve had is that no matter what happens I have everything I need. I worry and stress out about all the things I believe Nathan needs but ultimately he has everything he needs and so do I – people who love him, health, happiness.

So things have been a lot more enjoyable in our neck of the woods these days.

Since we got back, I’ve been trying to continue with a slower pace, trying to relax and enjoy Nathan more, and realizing that things will be as they will be.

I remembered that ultimately I can’t change anything, that all I can do is my best and then let go and have faith. I’d forgotten what it felt like to drop the delusion of control and just having faith, knowing that I have no ability to change things, that all I can do is have faith.

So that’s how things are going for us. We’re getting ready to go to Montreal next weekend for ABR. We are excited to get away and hang out together all day – the 3 Musketeers. We have a lot of fun together.

Stem Cells #2

So far I am happy with the results we’ve seen after this last stem cell treatment.

His muscle tone has relaxed. He has more range of motion in his hips and his feet aren’t as tight all the time as before. His hands are more open and relaxed and he seems to have more control over them. His head seems stronger and today he held it up while in reclining motion (I’ll take a picture tommorrow). He is making more sounds and seems to be trying so hard to get words out. He is laughing more over lots of things…for example, he laughed when one of the cars in CARS said “Holy smokes!” – he threw his head back and started laughing.

We’re hoping to see more changes – particularly more of that head control!

Stem Cells

We just returned from stem cell therapy in Dominican Republic.

I think pictures speak louder than words.

The “watching like a hawk” begins as we wait for miracles to start!