I debated whether to write this post, and as I type it now I’m still debating whether or not to publish it because outside of my circle of parents with special needs kiddos, I just don’t know how people will react. I mean, I know I’ve already stepped out of mainstream medicine and into the biomedical world with Rory’s care. Most people who don’t live in that world every day like I do most likely think I’m at least a little bit nuts for at least one of my beliefs about how we are trying to heal Rory. It’s ok, I get it. I used to think a lot of this stuff was kind of nuts, too.
But Rory’s latest intervention steps over the line from natural supports like fish oil, fiber and olive oil and into a very futuristic, almost science fiction, even magical intervention. Our big trip last Thursday and Friday? Was to take Rory to get HUCT, human umbilical cord treatment, aka stem cell therapy.
Now some of you may actually be educated about stem cell treatments, but I will admit that despite immersing myself in the biomedical world for the past year, I had NO CLUE about them before a couple of months ago, and I’m guessing that most of you are similarly uneducated about them. My only previous association with stem cells was using controversial embryonic stem cells for research on things like Parkinson’s, and I had no clue that they were now using adult cells (which includes umbilical cord cells) on a regular basis here in America for orthopedic uses like injured backs, shoulders and knees. And I certainly had no idea that stem cells were being used to treat children with autism to amazing results, including some who have been completely recovered and are back to being neurotypical children.
I’m still hardly an expert, but I have learned the basics and want to share them here as a very introductory primer.
Where are stem cell treatments being done?
Most of the treatments being done on children are being done at the Stem Cell Institute in Panama, the clinic of Dr. Neil Riordan who has been a true pioneer in the world of stem cell research (he is the author of Stem Cell Therapy: A Rising Tide: How Stem Cells Are Disrupting Medicine and Transforming Lives, which I read prior to making our decision and HIGHLY recommend if you want to learn more about stem cells and how they are being used to heal heart issues, severed spinal cords, muscular dystrophy, respiratory disease, frailty in aging, autism, and so much more). And while going to Panama for stem cell therapy sounded very sketchy and dangerous when I first heard about it, they actually have one of the most state-of-the-art facilities in the world and a price tag to match. With travel costs it’s generally around $20,000 to go there for stem cell treatment. And most children need more than once, so as you can imagine, this treatment is mostly being utilized by the very wealthy. Which we are unfortunately not, and $20,000 in one fell swoop would be extremely difficult to swing. (However if you can afford it, it’s definitely worth looking into, because Riordan understands stem cells more than anyone else I am aware of.)
There is also a very promising clinical trial going on at Duke University in North Carolina, but you have to either have your own banked cord blood or banked sibling cord blood that has an HLA match, plus they will not accept children who have a genetic issue that is known to cause autism, which Rory’s microduplication does. So that was out for us. But again, this is a great option if you have banked cord blood available and there are amazing results coming from this trial. I am hopeful that their results will make the FDA take notice and approve these treatments to make them more accessible.
There are also clinics in Mexico and other international destinations that would involve significant travel and financial investment, so scratch those from our list.
But thankfully for us, there are a handful of doctors around the United States who are using various types of stem cell treatments that are also treating children with neurodevelopmental issues like autism. Many of them don’t advertise these treatments for one reason or the other, but you can learn more about who is doing them and where by joining Facebook groups and talking with other parents, which as many of you know, is how I spend a ton of my time these days doing research and learning more about how I can help Rory. Many of these doctors are on a referral basis only, and that’s how we found out about the doctor we visited for Rory.
What kind of stem cells are they using for these treatments?
The most well-known type of stem cells are embryonic stem cells, which come from embryos and are controversial no matter your politics. While embryonic cells can be great for research because they can literally turn into any other type of cell, their main purpose is to make something, and because this is their purpose, they can cause tumors to grow if they are used inside a human. I don’t currently know of any doctors who are using embryonic cells, and even if there were, I wouldn’t be using them for safety reasons.
All other stem cells are known as adult stem cells (even if they are from umbilical cords). You can receive stem cells either from yourself—autologous—or someone else—allogeneic. Without going into a ton of detail, there are several ways you can get stem cells:
• The first way of getting stem cells is from bone marrow, and many clinics do this method, but it freaks me out to have to puncture the bone for something elective.
• The second is adipose fat cells, which they extract from the patient (or in the case of a child, often a donor) via mini-liposuction. This sounds quite attractive for ME (because a few nips and tucks sound lovely), but I have heard mixed reviews on the efficacy of these cells since generally speaking, the younger the cells, the more vibrant and numerous they are.
• So that being said, the most commonly accepted “best” source is donated human umbilical cords from healthy live births, and the cells they produce are often referred to as MSC and/or CD34 cells. I’m not even going to pretend that I can explain these to you, but I do know that these cells, when isolated from the blood, require no HLA match, meaning any person can get any cells without risk of rejection (note that Duke uses banked cord blood for their treatments and because the blood is also involved, there must be an HLA match, so a friend of mine banked her baby’s cord blood intending to use it for a treatment for her older child, but couldn’t because it wasn’t a match). So when I talk about MSC/CD34, I’m strictly talking about the isolated stem cells, and these are tested by the blood bank and by the tissue bank for safety and by a third party for viability. Most stem cell treatments are not approved by the FDA yet, but they are still very monitored and safe and the only known adverse reactions, which are rare, are flu-like symptoms, or if you have a sulfa allergy, you can have an allergic reaction.
• Rory received CD34 cells from human umbilical cords. We gave Rory a Benadryl before her treatment since my mom has a sulfa allergy and we weren’t sure if Rory has one too. She thankfully didn’t have any allergic reaction.
What do stem cells do?
Rory has a chromosome disorder where a small piece of her 15th chromosome (specifically 15q11.2) is duplicated. Stem cells cannot and will not fix this. What we are hopeful for is that the stem cells will help reduce a lot of the symptoms that have manifested from her chromosome disorder. Many of these symptoms (and generally speaking, all neurodevelopmental disorders like autism, apraxia and sensory processing disorder) are ruled by inflammation. The body gets irritated and inflamed, especially in the gut and brain, and it causes the symptoms to be exacerbated. Nearly all of the most successful biomedical interventions (including our beloved Nemecheck Protocol) are based around reducing inflammation in the body. The stem cells seek out inflammation, and then they act as, in my own analogy, the conductor in an orchestra. They tell all of the other cells in your body what to do and make them work together to heal things that need healing.
Unexpanded stem cells like Rory received (the only clinic I’m aware of who expands them outside of the body is Panama) are expected to replicate inside the body approximately every 28 hours for 65 cycles. So while some parents notice immediate gains from the treatment, other children need more time for the stem cells to be numerous enough to make visible gains. Of course some children don’t have any gains from stem cell treatment, but I will say that all of the children who have been to see Rory’s doctor have been making amazing and exciting strides forward, which encouraged us to take the leap and give it a try.
Our hope is that Rory’s gut issues (including food allergies and loose stools), sensory issues, and behavior issues will start to resolve over the next few weeks as the stem cells replicate. Of course the “most wanted” gain and the main reason we do all that we do for her, is speech. I try so hard to keep my expectations low and know with the logical part of my brain that any gains are positive and worth exploring this treatment, but my mama heart longs for nothing more than to have a conversation with my daughter.
Rory went in at 9:00am on Friday for her stem cell treatment. She received 1cc of CD34 cells which included 3-5 million human umbilical stem cells via IV push. It was quick, easy and mostly painless. There was no recovery time, and we were able to fly home the same day.
Rory handled the treatment as well as you would expect a four year old getting stuck with needles. She has had five blood draws now, so while I don’t love it, I am used to how she reacts and can handle it, especially since I know she recovers easily and isn’t afraid the next time. The nurse practitioner tried an IV in her left arm first and couldn’t get a vein so she had to stick her in the right arm as well. As she started injecting the stem cells, I got extremely paranoid that Rory was going to squirm, rip out the line and stem cells were going to go all over the floor instead of into Rory, so I was holding her SO TIGHT and heaved a sigh of relief when they were in. She got two bandaids which she wasn’t thrilled about (sensory kids rarely are), but I immediately gave her a lollipop and she stopped crying and consented to pictures with the nurse and doctor to commemorate the event, even though she was a bit cried out and spacey in them.
We went back to the pool for a swim (as we heard that swimming after can help fend off any fevers that might be side effects from the stem cell treatment), then went to the aquarium where she was in total sensory overload (it was loud, echoey and had several hundred summer camp kiddos in neon shirts careening around) but LOVED a tunnel that led to an underwater observation pod and spent quite a bit of time climbing in, out and hanging out inside. We had lunch at Red Robin which was dicey, then went to the playground, which she resisted at first but had a blast and played nicely with the other children there, and then we headed to the airport for the world’s worst flight followed by the world’s most peaceful flight on which she slept the whole time. Overall, she did very well for such a jam-packed 48 hours (we also went to the zoo the day before). It was so delicious to finally be home though, and to know that the stem cells were in her body hopefully doing their job.
In my next post I plan to journal once a day to note any potential gains we can attribute to this intervention. Note that there is a decent chance that NONE of the gains I note are the least bit related to her stem cell treatment and very well may have happened all on their own. But I want to have a record of everything so at the end of the replication cycle I can go back and compare from start to finish how much she has hopefully changed, fingers crossed.
Most parents use the ATEC, a self-guided and free online test that analyzes a child’s social, speech, sensory and health symptoms and gives a number score, with higher scores meaning a greater severity of disorder and lower numbers being desirable as neurotypical children are generally under 10. Rory has been hanging out at 57 for a while now, and I will take the test again after the replication cycle is complete.
Stem cells are so complex and while I’ve only grazed the surface of what there is to learn, I hope that this was helpful for our friends and family, and for any of my fellow warrior parents who are exploring stem cell therapy as an option for their kiddos.
I leave you with the fortune we got the week before we left on our trip. I always look for signs from the universe, and this one has earned a permanent place in my wallet.