"If it couldn't hurt and it might help, we'll try it." That's pretty much been our motto since Max's birth, and it's why we did stem cell therapy back in August. As far as we could tell, it wasn't going to harm Max, and there was potential for it to do some good. So we got the infusion at Duke with with Dr. Joanne Kurtzberg, using stem cells from cord blood we'd banked at Max's birth. We only had enough for one shot.
Lately, some of you have been asking whether the progress we've seen in Max is from the stem cells. My answer is, I don't know. Nobody does. Duke didn't do an MRI before the infusion or request a comparative one after, since conventional MRIs aren't sensitive enough to show differences in the brain of a child with cp. However, I've heard Duke is going to be doing another study where they'll be trying out a new type of MRI that is more sensitive.
We've hit the six-month mark, the time when changes might kick in, although they can also show up before...or not at all. In recent months, I've seen small but marked improvements in Max. He is more spontaneously using both hands. He is trying to speak more words. His overall cognition seems improved—he's always been alert, but now he seems even more so. I have not found any data that stem cell therapy can trigger an obsession with the color purple.
As Dr. K says, "I'm glad Max continues to improve, for whatever the reason."
Exactly.
Here's a recent CBS video about a newborn who got an infusion at Duke University. I continue to have tremendous hopes for the potential of stem cell therapy to help our children, and the groundbreaking work Dr. Kurtzberg is doing.
We want to have another child and was curious about banking and using for Tyler and research there. I want to try HBOT and I want to try so many things. I hope that at some point someone can find something that will HELP our kiddos. I am glad he is doing well. Makes my heart happy
ReplyDeleteWhat a cutie, that Max is. I am so grateful that you have seen improvements. I agree with Preemie Miracle. That makes my heart happy!
ReplyDeleteI think you have reason to hope. Dr. Kurtzberg's work is managed well and credible. That is not to say that all the traditional teaching and therapy children receive is not also important for making the most of the cord blood cell infusion. Thanks for the update. Stating that proof-of-effect is not available is important. Thank you for the honesty also. Barbara
ReplyDeleteI wish we had known about this study before we had Emmett. We knew he would be born with brain damage and could have harvested the cord blood. The only advice any of the specialists would give us was to terminate!!
ReplyDeleteI'm sure that the cord blood transplant has helped Max, but I also think that MAX has helped Max. He's a determined little boy with his own timeline, and parents that are cheering for him every step.
Whatever the outcome, it's a HUGE thing to know that you've given it the "max"imum effort (sorry, couldn't resist). That's all we can do as parents. We have friends who have done 2 infusions with their son (sadly, we didn't bank Amelia's cord blood) and have also seen small but marked improvements. Keep on keepin on, Max!!!!
ReplyDeleteMax looks so great in the pictures! His attitude is so positive, how'd you do that, get him to be so relaxed like that? And happy..
ReplyDeleteAnd, I love what your Dr. said, "It's good to see Max doing well, no matter what the reason."
Amen
Alexandra
I love your attitude. With special needs issues it is often (always?) hard to determine what helped what. The good news is Max has continued to progess in a positive direction. Hopefully the docs will learn something from Max that will help other children too.
ReplyDeleteI am fascinated by stem cell therapy. I'm glad that Max was able to benefit from it. Will there be any further evaluations that researchers may use to determine if improvements were due to the therapy? Either way, I'm glad for Max and your family. May the improvements continue!
ReplyDeleteDo you know if there is any research on improvements from stem cells from siblings? Ella was our first and didn't have damage till after she was born, we are pregnant with #3 now and I was wondering if there is any research on using another child's blood cord and stem cells.
ReplyDeleteWho knows if it's stem cells or good parenting or maybe a combo of the two? We are so conditioned to demand instantaneous miraculous results (penicillin did that to us, I guess) that we're not used to graduadul gains anymore--we don't believe them when we see them. I love the IDEA of it, though, the possibility...! Hope is half the battle!
ReplyDeleteNancy, we've also done HBOT, when Max was around a year old. Again, no idea if it did anything for him, but we figured we needed to try. Luann, we'll probably head back to Duke for a followup appointment this summer, but they really won't be able to assess how and if the stem cells have helped without an MRI. It's just not possible to know what's natural development, what's the result of the stem cells, if it's a combination of both. And, Mitchell mama (I'm sorry, I don't know your name), I don't know of any therapies being done with sibling cord blood, but I haven't thoroughly explored that. While we were at Duke we asked Dr. Kurtzberg about using Sabrina's cord blood for Max, and she said that in order to do that they'd have to put Max through chemo (because his body would view her stem cells as foreign entities) and that the chemo would be grueling and have its own risks—so, not "worth" it for a child with a nonthreatening medical condition.
ReplyDeleteI'm with your line of thinking: if it doesn't hurt, let's try it (if we can afford it). With my husband in school and me not working, that still limits us tremendously, but life has a way of working itself out and I'm very hopeful.
ReplyDeletethank you for sharing your opinion on stem cell and being open about it. This is definitely on my list of things to try when we can.
Cheers to Max and his continued improvement! He will continue to amaze us all, of that I'm sure. Go Max!!!
Wow, Max is amazing! That's is for certain. Look at that smile, even smiling while in a hospital bed. Wish I had the kind of winning personality. You know that is the thing with new and emerging forms of treatment (alternative or otherwise) for our kids, the evidence for them doesn't always exist with definitives. It's like, if you have the funds or the opporunitites, why not? It's like you can never be exactly sure how much they helped--or if they helped at all. I always like to think that everything we did for Emma had some small impact toward the positive, even if it was to give us hope and keep us going. That means something. I just applaud you for your take on life, your commitment to both your children, and your willingness to share so genuinely--and generously. Thank you.
ReplyDeleteYou max did stem cells therapy à Duke in 2010?
ReplyDeletePlease I'm thinking about for my son
Can you tell with time if it's helped you son?
If you had any complications because of?
Thanks
Svetlana