I was surfing the web tonight and came across this: Scientists at Northwestern University may have discovered a way to protect against cerebral palsy. They've developed a kind of drug that inhibits the brain's production of something called nitric oxide; at high levels, this stuff has been shown to damage brain tissue. Too much nitric oxide is thought to play a role in cerebral palsy. Some 750,000 adults and kids in this country have CP, with the majority born with the condition. (Before last night, I never knew that stat—did you?)
The study's out in the March issue of Annals of Neurology (you know, the type of publication that you'd typically browse through on a Sunday evening when you're vegging on your couch). None of the articles I've read online have made it clear whether or not a "vaccine" or injection of sorts might be possible that would be given to mothers to prevent the rise of the nitric oxide—they're just saying that preventive strategies for CP might be feasible for humans in the future. There is a lot more research to be done (the tests were done on animals) but, still. This is a breakthrough discovery.
Imagine.
I e-mailed the professor of chemistry at Northwestern who lead the development of the drug and thanked him. I had to.
This discovery makes me incredibly, unbelievably excited. It also makes my heart ache a little. Obviously, I can't turn back the clock for Max. We can't turn the clock back for any of our kids. But if in my lifetime cerebral palsy could be prevented from striking babies, I would die very, very happy.
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Very interesting.
ReplyDeleteThey actually gave Fletcher nitric oxide a few times in the NICU to help his lungs. I haven't had a chance to do much more than skim the article you posted, but I am sure there is probably a distinction between what they have found and the practice of administering it in the NICU (at least I hope there is). Even so, it does make me a little concerned about the connection.
I also understand the bittersweet feeling reflected in the last paragraph of your post. Not too long ago I came across an article about the possibility that the prenatal administration of mag sulfate may reduce chances of preemies developing CP. Fletcher had to be delivered early because I was really sick with preeclampsia and HELLP syndrome. The last few days and esp. hours before his birth are hazy at best, but I am pretty sure they didn't hook me up to the mag sulfate drip until AFTER he was delivered, so he didn't get any of the possible benefits.
I guess it is just another one of those nagging "what-ifs" us special needs moms torture ourselves with from time to time.
Don't get confused... Remember CP is an injury to the brain from lack of oxygen or damage... Not a disease, there for can not be a vaccine to prevent it.
ReplyDelete"Silverman and Tan wanted to see if they could prevent brain damage in the fetuses by administering one of the compounds to the mother before the hypoxic event."
Hypoxic = lack of oxygen... How do you KNOW there is a lack of oxygen and when it will occur... Per say mom would have to wear a monitor 24/7, and be given a "shot" the moment the Hypoxic event happened.
Use of such compounds was also discussed in a NatGeo show "Moment of Death"... Amazing stuff really. Damage to the brain starts in less then 2min from lack of oxygen.
Remember CP is a brain injury not a disease...
Ellen,
ReplyDeleteI admire the selflessness in your journal entry. It can be very easy to sink into the "woe is me's" and I applaud you for looking outside your world instead. Even though Max can't be helped by the latest news...or Gavin...or lots of other kids...the fact that you focused on strangers in the future!! Well, that's just the kind of person you are. And that, to me, almost guarantees that your children will grow up to be confident, compassionate, decent human beings. Am I deep tonight, or what? I'm serious though...
Very inspiring post...and news.
kate.
www.caringbridge.org/visit/gavinleong
Thanks, Kate. That was sweet of you to say, really.
ReplyDeleteRich, I am fully aware of what CP is, believe me. You're right, though, it wouldn't be a "vaccine." What they are trying to do is prevent the possibility of a rise of nitric oxide in an infant's' brain (OMG, listen to me), so it seems like something would be administered to the mother around the time of birth. When you are in a labor, you are already wearing an oxygen monitor.
So many things yet to discover. I'm banking on stem cell research myself. We didn't bank Amelia's cord blood, but we will definitely be banking her baby teeth (www.bioeden.com) and hopefully soon there will be even more to celebrate.
ReplyDeleteThanks for the update Ellen. It's great info to share.
What I was trying to say is a Hypoxic state can happen at any time during the 9 months, giving something at birth or shortly before would have little effect on what was caused say, 2 or 3 months in... Less the injections where given, say, every day, every week? (sigh)
ReplyDeleteI also understand where you are coming from. I do have a question.. what about the babies that had bleeds. It was not because of the oxygen or the nitric oxide. hat about the ones that have strokes Due to something else?
ReplyDeleteI hope that it helps some other mother for sure.
Thank you for sharing that article.
( I also don't know max's whole story but I will definetly be archiving and reading. Forgive me if I have spoken out of turn)
Rich and Nancy, you're right, this seems like it's only for kids who are dealing with oxygen deprivation, and who didn't stroke for other reasons (or before the birth period). Max suffered a loss of oxygen deprivation at birth, so this research really spoke to me.
ReplyDeleteEllen,
ReplyDeleteHave you read anything on stem cell research? I have heard some interesting stories, and from my understanding, the most promising beneficiaries of the research are kids around Max's age.
~Marianne
Thanks for sharing, Ellen! While it sounds like the vaccine couldn't prevent all forms of CP, it could help to prevent quite a few cases. I don't think it would have helped Daniel, since his CP is the result of a stroke. But anything that can help other kids is great news!
ReplyDeleteI know what you mean about feeling a little sad that such new treatments can't help our children. I felt the same way when it came to the stem cell/cord blood therapy at Duke University. But there are so many services available today that weren't available 50 years ago, which is really great for our kids. Who knows - perhaps 50 years from now, there will be an actual cure for CP.
Our little DD had 2 brain bleeds at birth stage III & IV; these were caused by the placenta detaching itself from the wall of the uterus and depriving her of oxygen & nutrients. If they are in fact finding that nitric oxide is working if given before the onset, this is wonderful news. Even though it cant help our little one if it can just spare one child born into this world from having the affects of CP so be it! I feel relieved just knowing that. Thank you Ellen for sharing what you have found; it truly is very promising news.
ReplyDeleteBecca
Oops, I meant to say that Daniel's was the result of a stroke while I was pregnant, and we still don't know the reason. The only possibility the doctors have come up with is that my placenta twisted during a random event, which lead to Daniel's stroke. But again, if the nitric oxide could help other kids, I'm all for it!
ReplyDeleteThis IS amazing news! It makes me think of the effort to reduce spina bifida and other neural tube defects through the use of folic acid supplements and adding folic acid to bread. The number of babies born with NTDs has been reduced by 27% in the 10 years since the nutrient was added to flour and bread!
ReplyDeleteActually, I was a bit surprised that the number was as low as 27%. I've been working as an OT for 30 years, and I can say that I have seen a huge decrease in patients with spina bifida. When I first started working as an OT, I'd say that CP and spina bifida accounted for most of my caseload. But in the last 5 years, I've only treated 4 kids with spina bifida. Wouldn't it be amazing if we were able to reduce the number of kids with CP by those kind of numbers?
Thanks for bringing this info to our attention, Ellen.
This would be great if it is something that comes to be available. My son has a brain malformation so there was nothing that could have been done. But it is great that there could be hope for future children to not have to suffer with this condition or maybe have their degree of severity be less.
ReplyDeleteThis wouldn't have helped in our situation either but how wonderful to think that there might be something that could help reduce the number of kids with CP! From what I've read, despite medical advances, the numbers of kids diagnosed with CP every year seems to be pretty stable. This kind of injection may be something that will finally bring that number down. Exciting stuff!
ReplyDeleteThanks for the post about this new research! Elijah suffered from oxygen deprevation during birth so the research also really spoke to me. I also saw news online about it, but haven't had time to research further. Lisa is currently in a hyperbaric chamber with Elijah for his second dive today - 38 more to go!
ReplyDeleteI have really mixed feelings about this (honetly I'm kind of upset by it). I wouldn't wish C.P. on anyone. HOWEVER I wouldn't trade my life with C.P. for anything else in the world, for various reasons. C.P. has much more to offer than the "disability" parts. I could go on and on but I'd rather not step up on a soapbox without being asked. I just wanted to throw in my two cents.
ReplyDeleteOh, Sarah. i am so sorry, I didn't mean to be insensitive. Clearly, as the mom of a young child with cp (as opposed to being a person who has CP), there is a part of me that still struggles with acceptance (I just did a post on that over at a site called 5 Minutes for Special Needs). It's not as if I'd ever want to "trade" Max for another kid—I love him for who he is. I hope he is happy with his CP, as you are, though he cannot express that to me just yet.
ReplyDeleteI would so love to hear more from you on this topic, as I'm sure many parents who read this blog would. Are you up for doing a guest post sometime? Email me and just say the word.
I am like you, Ellen, if it can help others that's a good thing.
ReplyDeleteWe always have a secret wish that we could turn back the clock, but then we all wouldn't be who we are, from the silly to the serious.
I'd give my eyeteeth to be able to go back to one day in high school when I got my senior photo taken--and not wear that HORRIBLE HAIRDO!!!! We aren't talking bad, we're talking "makes Amy Winehouse look pulled together" bad. And I did think I looked good at the time, fool that I was!
I'd love to have been able to warn my husband on the day he was killed.
But you can't go back, you don't get "foreknowledge" ...unless you are a psychic... and you can only go forward. All of that said, if this research can help others, well, it's a good thing. I hope this guy is on to something!
Like Sarah, I also have mixed feelings about the article. I have spastic diplegia due to lack of oxygen at birth. I am 22 years old, live on my own and I'm about to graduate college. I love my life and the only thing related to my disability that upsets me is other people assuming my life sucks. If someone found a cure for CP I wouldn't take it. I hope my friends and family would agree with me. There's nothing wrong with me. Yeah, I have to do some things a different way and some things take longer but that's life.
ReplyDelete(Absolutely not a personal attack on anyone. Just my opinion.)
Lisa, thanks for sharing your thoughts. Again, I did not mean to imply there is anything wrong with having CP. Max is an amazing kid. But I can't help but feel that if it would have been possible to prevent this from happening to him, then I would have prevented it. I am saying this as a mother, obviously, and not as a person who has CP.
ReplyDeleteHey Ellen,
ReplyDeleteJust wanted to let you know that I went to the CP Conference co-sponsored by Reaching for the Stars and the Pediatric Neurology CP Center in St. Louis and one of the scientists from Northwestern was there and gave a presentation of the research. Very interesting and promising. If you are interested enough, I think a video of the conference is available for $40, but I am not sure the presentation was any more informative that the article itself.
Like Lisa, I have mixed feelings about this. I have a unique perspective- I'm the owner of a cat with CP. Will the research benefit humans with CP only or will it be used to help animals with the condition as well as humans? I want to hear about things which will help Sophia.
ReplyDeleteP.S
I know I'm 4 years late yet it is so interesting I had to respond.