Parent’s Guide to Cord Blood, November 2022
In this news story we introduce parents to the website CORD BLOOD, STEM CELLS & AUTISM at the web link https://www.cordblood-msc-autism.com/. This website provides a how to guide for parents seeking cell therapy for autism. The Clinics link of the website leads readers to a spreadsheet of information about clinics worldwide that offer cell therapy for autism: where they are located, what is their treatment protocol, and how much they charge. This website is NOT under the control of Parent’s Guide to Cord Blood Foundation. The creator of the website is a mother named Michal, and this is her story.
My name is Michal and I am a mother of four children, three of whom are on the autism spectrum.
About six years ago, Dr. Joanne Kurtzberg came to Israel and gave a lecture about her research on cord blood for the treatment of children on the autism spectrum. I was one of the parents that attended her lecture. A week later, I sent my oldest son’s details to Duke, and in Dec. 2019 we went to Duke to treat him with autologous cord blood. He was 8 years old.
During the first year after my oldest son’s treatment with cord blood for autism, he improved significantly in terms of communication, above and beyond what was expected in normal development. He started answering when called, explaining to us and himself what he needs, what he feels, and what bothers him. It was a remarkable improvement from his abilities before.
In the three years that have passed since the treatment, my two youngest children were also diagnosed with autism. They are twins, a boy and a girl. After experiencing firsthand the payoff that can occur with the help of regenerative medicine, I began to dive into this world to look for a similar treatment for my younger kids. Although I had saved the umbilical cord blood for the twins as well, in my son’s case the cord blood unit is very small. This led me to research cell therapy for autism with MSC from donors.
I read scientific articles alongside parent’s stories in dedicated Facebook groups. I learned about the various cell therapy treatments for autism that exist, and the differences between them. Through the Facebook groups I got to know the different clinics that treat children with autism, I read feedback from many parents, and gathered information directly from the clinics to understand the specific treatment that each one of them gives. I learned that each clinic has its own protocol and almost no two clinics provide the exact same treatment. I learned that there are only basic guidelines for working with MSCs (mesenchymal stem/stromal cells); therefore, there is no uniformity between the different laboratories for growing MSCs.
While collecting information from the Facebook groups I realized that people with different interests often post there. Sometimes the administrators of the group only promote one clinic. I learned to be careful in gathering information. As in any non-professional group, there is a need to differentiate between established information, rumors, and feelings. Over time I learned to recognize those parents with a wide knowledge of the subject in each group and look for their posts and replies. I also check information compared to what is known in research and with the clinics themselves.
After many inquiries spread over a period of several months, I scheduled treatments and flew with my children.
In October 2021, we flew with our youngest son to Serbia, to Swiss Medica clinic. My youngest son is diagnosed with low-functioning autism. He was five and a half years old. He received a dose of 4 million MSCs per kg plus exosomes. Before the treatment, he would tap on everything around him, and drop everything he was holding. Two days after the treatment he started opening drinking bottles on his own. He stopped hitting things, he was holding objects and putting them down. His eye contact improved and he became happier. In August 2022, we took him to the clinic in Serbia again at age six and a half years old. He received a dose of 6 million MSCs per kg plus exosomes. It has been 2.5 months since his treatment and he is playing in ways that he did not do before; at the playground he goes on the swing and the slide by himself. He is doing a little better with bowel control but there is still a lot more to learn.
My daughter, the female twin, is registered for a clinical trial of umbilical cord blood therapy for autism in Israel, so we cannot take her for other regenerative treatments until the research is done.
However, we went with my oldest son for a second treatment at the Panama Stem Cell Institute in May 2022. The second treatment had to be with donor MSC because we already used his stored cord blood for the treatment at Duke. He received a dose of about 1.5 million cells per kg of MSCs derived from umbilical cord tissue. He was 11 years old. Since the treatment, he shows much more interest in the world and what is going on around him. The conversations with him are much richer and deeper. His therapists say that his ability to internalize and implement changes has improved a lot.
The decision to take children with autism for regenerative treatments is not an easy one. The science behind it is largely in its infancy. The treatment does not help all children and there is no way to know in advance if it will help a specific child or not, not to mention that it is an expensive procedure. In some countries, these treatments are considered illegal, and there are no worldwide rules that create uniformity in this area, therefore there is a large variation in the product from laboratory to laboratory. The supervision of the laboratories and clinics is in the hands of the local health system, and it is difficult to know how this supervision is actually manifested. In addition, many clinics work without approval from the state and without any supervision, and at the same time offer much cheaper prices which attract many families looking for an affordable solution.
Alongside all the many concerns there is the understanding, supported by research and parental testimonies, that some children on the spectrum that are treated with umbilical cord blood and MSCs show significant improvements that would not have been achieved in any other ways. In those cases, these gains are life-changing for the child and his family. I started with autologous cord blood treatment, which is a much safer treatment since the child is given his own biological material. After seeing how the treatment improved my son’s abilities, I couldn’t help but want to try to continue helping him and my other children with cell therapy.
When I started reading and studying the topic of regenerative medicine, what really stood out was that there is no single place that unifies the accumulated basic information about cell therapy for autism. Every new member of a group was forced to read tens, if not hundreds, of posts and through them try to collect the relevant information. I myself felt overwhelmed by many details and felt the need to organize the information in a coherent way. At that time, I was very active in the various groups and found myself answering the same questions over and over again. I started to collect the recurring questions and from them, I created the skeleton of the website. Writing the website helped me organize my thoughts and knowledge and also allowed me to help those parents who were recently exposed to the field and were thirsty for organized information.
Source: Parent’s Guide to Cord Blood