This news report from San Diego is about some remarkable improvements in a young child with hemiplegia treated with her own stored cord blood cells. This is very good news for parents who have access to their baby’s cord blood.
This is the link to the report on this child’s treatment. It is well worth watching…it starts after a short ad. http://bit.ly/1Rj7Xf6
Most of us have been aware of the early Stage II trial of cord blood infusion at Duke University. The study protocol treated newborns with documented HIE from birth asphyxia with their own cord blood. The goal is to prevent or diminish cerebral palsy and cognitive delays in children with early brain damage. This study is due to be completed in July 2016 and the results are eagerly awaited. I have personally seen just one child treated as a newborn with the Duke protocol and so far, I admit that his development, both motor and cognitive is far better than I would have expected.
The San Diego report above opens the field to trying stored cord blood on older children as well. This is the subject of another research trial at Duke University that has enrolled children with CP aged 12 months to 6 years of age. https://www.dtmi.duke.edu/news/kurtzberg-and-team-move-forward-cerebral-palsy-cord-blood-study
Another study has just started in Australia that will also treat older children aged 1 to 10 years who have been diagnosed with CP. They are also using the patient’s own stored cord blood. It is a two year study to see if there is any change in the children’s motor function. https://research.cerebralpalsy.org.au
But what about everyone else who does not have stored cord blood available?
Originally, people thought that if you did not have the baby’s own cord blood cells to use, there would be no hope and certainly no hope for older children and adults. Thankfully, neuroscientists and neurosurgeons around the world are developing ways to generate a person’s own stem cells to repair the brain. This TED talk, by functional neurosurgeon Jocelyne Bloch, has been watched by over a million people worldwide. It is an exciting new approach, culturing a specific type of brain stem cell, called Doublecortin-positive cells. While these studies are just now being done with monkeys, it is another positive step in the direction of improvement for children with cerebral palsy.
In a previous post, I talked about another method that involves culturing stem cells from the human patient’s bone marrow and then infusing them via a vein. Surprisingly, these cells were able to find their way to the brains of humans with Multiple Sclerosis and slow the progression of the disease! Dr. Siddharthan Chandran of the Anne Rowling Regenerative Neurology Clinic gives an informative talk about their exciting research. He also advocates for new ways of doing drug and stem cell research that if applied, would shorten the process and speed discoveries into clinical practice. http://www.ted.com/talks/siddharthan_chandran_can_the_damaged_brain_repair_itself
I believe that parents of children with CP should learn about these various approaches and support the parent groups that are pushing for more research specifically targeting children with cerebral palsy. Dr. Chandran makes a compelling case for the societal and personal cost of degenerative diseases in adults. This is a hot topic in adult neuroscience. Now we need more scientific advocates from pediatric neurorehabilitation to remind our best and brightest neuroscience brains that children with CP have a lifetime ahead of them and the cost of this to the child, their families and to society is massive.
As ever, your comments and questions are welcome.
I am so interested in this topic, and await the day when we can use others or generated stem cells for our children. I have a 4 year old daughter with hemiplegic CP. We did not store her cord blood at birth. In fact, we waited long after the birth to even cut the cord. So, I like to tell myself that she had her own personal infusion of stem cells at birth, before we ever knew there was any issue. I have no idea if that is true or not, but it does make me feel better. I would love an opportunity to be in a trial with donor stem cells.
Dear Heather, You are right.Delayed cord clamping may have several benefits for babies. I think there now is enough data to say that parents should try to store cord blood if the baby is premature or distressed. For all the rest who did not have that chance, I think the future will give us ways to either clone cells from the body of the child or to stimulate their own endogenous stem cells that are throughout the body, even the brain. There are a lot of stem cells in the brain, if we can figure out how to “turn them on”. I think the future is far brighter than it was even 5 years ago. Thank you for your comment.
We stored both our children’s cord blood, a few months after our daughter was diagnosed with hemiparesis we contacted Duke but she did not qualify for the study because of a positive sterility result in her cord blood sample at the time of storage. I was devastated. I am so happy to know there may be other options. We have her brother’s cord blood as well which could be used in the Duke sibling study I think.
I have heard from a few parents in the CHASA support group that the moat gains are observed in language and cognitive areas. Is this true? My daughter is only affected in motor areas and is mild.
Edurne,Thank you for your note. Yes, the sibling trials are underway and there will also be unrelated trials as well.And then the studies of how to stimulate the brain are also promising. I think only the Duke researchers and others closer to the trials can tell which changes are most common. While you wait for an opportunity, I hope this blog will give you some options to maximize your child’s potential.
I was told cord blood could not help with my daughters condition. Sturge Weber Syndrome, but she is classified as having CP as one of the symptoms. This was 5 years ago and she has had a HEMI since then what hope is there for kids that ended up having surgery for it? Can this help improve anything as the two hemisphere have been separated?
Dear Candice, Cord blood has stem cells that help repair the damaged cells.If there is a genetic cause or the brain tissue is removed or disconnected, I would not expect them to have an effect.However, intensive therapy can help even in a child with a hemispherectomy. The link will take you to the Results and Testimonial page at Step By Step Therapy Center. There is one case report of a girl with a hemispherectomy there.http://www.sbstherapycenter.com/#!services2/cctp
My son was diagnosed with a genetic condition that caused damage to his brain between 2-5 months. We saved his sister’s cord blood in the hopes it might help someday. I called Duke several years ago to see if they would consider him for the treatment and was told they were not taking patients with genetic conditions. His condition is stable and he is doing quite well considering but cannot walk independently nor talk effectively with others. What are the chances Duke might accept pediatric patients with genetic causes to their neurological condition?
The short answer is that I do not know. I would keep trying with a phone cal every year or so. I doubt they would include children with a genetic disorder in these first trials, but it may change as we all become more knowledgeable about what stem cells can and cannot do.
Hi i am an aunt to a 10 year-old niece who has CP. I had approached Dr Kutzberg to understand if they were enrolling patients for the trial to utilize sibling cord blood (we stored my nephew’s cord blood in hopes that it can dome day be used to help my niece in her condition). In the end i was informed that the trial included patient’s own cord blood. But Dr Kutzberg was quick in replying back . I am now looking at enrolling her on trials where patient’s bone marrow stem cell is promising. Would love to hear more on the same.
Thank you for your comment Laura. You are talking with the right people at Duke! I believe there will be great progress in this area in the coming years. In the meantime, it is important that we try to minimize maladaptive habits and encourage neuroplasticity so that the children are in the best possible shape when stem cells and other innovative discoveries are ready for clinical use.
This was a really uplifting thing to read, I’m so happy to see someone successfully benefitting from stem cell therapy. I have a two year old son with spastic cerebral palsy. He is very immobile and non verbal, we have a baby boy due in three weeks and we’ve paid for our cord blood cells to be banked in the hope that we can use it to help Archie’s cerebral palsy.
Do you know who we could speak to regarding taking part in the sibling trials? Or who we would speak to in duke university about using our cord blood to help Archie?
I would look on the NIH pages and at Duke.
At the bottom of the page there is a phone number for more information. Thanks for the question.
This is really intriguing stuff. My youngest son has C/P and we were told that A, he will not live to see his 6th month ( Daniel is now 26yrs. and thieving.) B. “He would never talk.” ( you can’t shut him up.) C. “He mite sit up if we cut him right.” (He walks with assistance) |D. He should be moved to the back of the room and released to the state as he will never be anything but a burden his entire life. ( He lettered in academics all 4yrs in High School. He can not right well but he surfs the web like a pro.|) Tell everyone you can that there is always hope and help!
Thank you for sharing your story. It is a great help to parents who are now where you were all those years ago.Parents becoming aware of what is possible will, I believe change the world.All best wishes to your son as well. He is a lucky lad to have a parent like you. Karen
I have read a few parental accounts of not qualifying for the Duke study because their child’s cord blood had been contaminated (as mentioned above). Is there any information available to provide to doctors to reduce the likelihood of contamination at the time they collect the cord blood? What about reputable storage facilities used/recommended by Duke?
I have a 6 year old with quadratic spastic cerebral palsy and we’re also expecting. We plan on storing the baby’s cord blood this time around in hopes it may be useful to him or his brother some day.
Dear Tara, It is a good question and it is important to get the advice of the Duke investigators.
I feel sure they must have a protocol. Best wishes, Karen
I have a son that will be 18 in October of 2017. The doctors have never really pinpointed the cause of his CP. Is there any hope or any opportunity for him to receive stem cell therapy? I would do whatever is needed to give him this opportunity.
I would contact the Duke University Stem cell program for more information. They are the current leaders in this field.
hi i to have a daughter who is 18yrs cp. i have been in touch with duke for years. i have my sons cord blood in a cord bank waiting in hope for them to do trials for this. the latest trials are apparently for younger. its sad that they will not extend this to older children. we had her bone marrow stem cells done last year in a facility in colorado which was amazing. we did see alot of improvements in fact alot of people noticed a difference. she needs it done again. but the costs are sadly so high.
Thanks for your comment Steve.It really is sad how long it takes for proven interventions to make it into the mainstream. At the very least, more institutions should be doing studies.
Please provide the Colorado facility you used for your child. I’m interested in this for my son. Thank you in advance.
This website is not set up for conversations. You can assess other parents in my Facebook group, but I do not have contact information for people who comment.I would check with Duke University first.
I have just finished contacting Duke University and they will be conducting another study come this spring using donor cord blood cells which means that effectively sibling cord blood is not required. Furthermore, i believe they will be breaking up the treatment groups into 2, one group which is HLA fully matched and the other which is HLA mismatched which means that HLA matching may not be a complete inclusion factor for the trial. I hope i am not confusing the trial. This is great news because so many parents like myself have not banked cord blood. Stem Cell therapy as regenerative medicine IS the future!
Yes they will going to do this trial: it will be 2 groups: stem cells and placebo (first infusion) in 6 months they change places, children’s from placebo getting real stem cells and other group placebo
At the end evrebody will get stem cells
( but at any case, in order to be selected : has to be HLA mached 5 from 6)…
Just find your blog great informations ! Thanks
i have a16 year old sister with cp..we are hoping that the future will help us to treat her damaged brain cells..i need the full information and improvments about the research of stem cell therapy for cerebral pulsy
The best source I know is the Duke University Stem Cell Project. I would contact them for information.
Please include me on this wonderful blog
Unfortunately I do not have a sign up on the blog. You can register it on your news feed or become a “friend” on my Facebook page. If you want to follow the 20:4:80 Posts, you can join this group as well.https://www.facebook.com/karenpapemd/
Our son is too severe to qualify for the study, per Dr. K. Do we have ANY other options for stem cell?
No other approved trials as far as I know. Hopefully more will become available over time but I cannot hold out much hope of a early change in the regulations. I am sorry.