Exploring Stem Cell Therapy for Cerebral Palsy: A Costly Alternative, But Worth It

When Hudsyn was first given the label “cerebral palsy,” Dan and I sat in that tiny doctor’s office and listened as the neurologist explained what the medical term actually meant. We nodded our heads – partially in disbelief, yet also having a large amount of relief that we finally had a diagnosis.

The tough part came when he began talking about “what we do next.” Some part of me was really hopeful. Surely because this diagnosis is so common, there are a variety of things we can do to help our little girl live a full life. But after hearing the statements, “We cannot repair brain damage…there is no cure for this outcome. So what we do now is treat symptoms and make her as comfortable and happy as possible by encouraging the healthy brain cells she has left to work hard and operate at their maximum potential.”

I felt like I’d been punched in the stomach.

No cure? No way we can repair her brain to go back to what God had created for her in my womb? This wasn’t supposed to be the way her life was supposed to begin. Give me the path, doc…anything. I’ll do anything to help her get better. Will it take thousands of dollars to get a treatment that I’d have to go to China to receive? I’ll do it. But saying there’s nothing you can do…some part of me refused to accept that.

And, I’m very grateful I didn’t accept his answer at that time. Because with hope and determination, comes solutions.

We began praying…a lot. Then I began to research…anything I could get my hands on to help understand CP and what our life was going to be like in the future. It hurt – because some of it was unbelievably difficult to imagine. I asked other parents what they were doing for their children. I found treatments like Cuevas Medek Exercise therapy, Hyperbaric Oxygen Therapy (HBOT), and a host of alternative treatments. But none of these proved to actually improve her condition significantly on their own. Most of them just helped the spasticity and other symptoms of CP get marginally better.

And then, a glimmer of hope surfaced…a mom on one of my support groups pointed me to a Doctor in Panama City that was doing something called Stem Cell Therapy for kids with brain damage…especially those with the diagnosis of Cerebral Palsy. So I dug a little deeper and found videos of parents talking about their experience after stem cell therapy. It was incredible. One little girl wasn’t able to walk before the treatment and now was ambulating across her living room with assistance. 

Obviously, I was skeptical, and so was Dan. I think his first statement after hearing that I was suggesting we take our baby girl to Panama City to get stem cell injections was, “I’m sorry honey, but there’s no way in hell we’re doing that.”

I continued to research the treatment, despite his skepticism and mine. I wanted to know more facts. Maybe we couldn’t do it right now, but I wondered if this was a future possibility for her once it was FDA approved in the U.S.

Cord banks in the U.S. are talking about it…about their healing and regenerative potential. As the master cells of the body, stem cells are the building blocks of blood, tissue, and organs. Cord blood stem cells are being used today to treat serious diseases like leukemia and sickle cell anemia. They’re also being researched as treatment for conditions like cerebral palsy, traumatic brain injury (TBI), and hearing loss in clinical trials and lab research.

The Research

I continued my thirst for information by reading several books, articles, case studies and medical journals. I watched even more videos, presentations, listened to podcasts and audio recordings – anything I could get my hands on to learn more about this type of therapy, but especially if it applied to kids and those with cerebral palsy. Below is a summary of the biggest points I pulled out of each resource:

Along with many other researchers, scientists and physicians exploring this therapy, Dr. Riordan is near the top of our list. He has continually pushed the envelope and challenged traditional medicine to consider the benefits of stem cell therapy for all – but especially in children.

His book, “Stem Cell Therapy: A Rising Tide: How Stem Cells Are Disrupting Medicine and Transforming Lives” was published in 2017 and continues to be one of the best endorsed and most read books on the topic.

Book Summary: Dr. Riordan begins with his story of how he helped Ryan Benton overcome one of the most severe forms of Musular Distrophy called Duchenne. Ryan had incredible results with Dr. Riordan’s help and continues to live his life in Kansas. He goes into detail about his research, journey and patient outcomes of his time first in Costa Rica and now Panama, where he has made medical tourism work. This is the clinic we eventually chose for Hudsyn, but more on that later.

“Umbilical Cord Stem Cell Therapy: The Gift of Healing from Healthy Newborns” by Dr. David Steenblock:

Book Summary: This book talks about the first recorded medical use of stem cells occurred about a century ago when doctors administered stem-cell-rich bone marrow by mouth to patients with anemia or leukemia. Stem cells simply stated are unspecialized cells that give rise to specialized cells (they can become any cell or tissue the body needs). In the last decade or so, pure cord-blood stem cells have been used by physicians to treat intractable diseases such as progressive multiple sclerosis, amyotrophic lateral sclerosis, certain degenerative eye disorders, stroke, diabetes and various forms of heart disease. Today in the U.S. more than 80 diseases are in some way addressed by bone-marrow transplants and umbilical-cord blood treatments. It is, of course the stem cells in bone marrow and cord blood that do the work in repair, restoration or healing of an organ or tissue. Unlike bone marrow stem cells, umbilical-cord stem cells appear to carry an extremely low risk of rejection or of causing an adverse reaction. In 150 patient treatments involving human umbilical-cord stem cells tracked over an almost 3-year period, no such reactions were ever noted. In 2003, Dr. Ramirez performed a study of 40 children who all had cerebral palsy. They received umbilical-cord blood stem cells and 85% experienced significant improvements in motor skills and cognitive functions.

“Stem Cell Now: A Brief Introduction to the Coming Medical Revolution” by Christopher Thomas Scott – Executive Director, Stem Cells in Society program at Stanford University:

Book Summary: Although not the source of where Hudsyn received her stem cells, this book is more about embryonic stem cells. It focuses on the huge and growing debate of using these types of stem cells for the potential of curing cancer, growing new organs and repairing the immune system. In general, embryonic cells have been debated thoroughly between Republicans, Democrats and the various religious faiths. Most of them strongly oppose the use of these types of stem cells.

Breakthrough research studies like that of Professor James Thomson prove that stem cells can be coaxed into becoming any tissue type in the human body. Tests of umbilical cord blood show that its stem cells are highly potent and very active, which means they generate more new cells in the body than their hematopoietic stem cell cousins. However, this comes at a cost – the rapid regeneration of cells means tumors and significant side effects are usually a result. This is not the type of stem cell therapy we have used with Hudsyn and we don’t recommend it due to its volatility and dangerous side effects. Science has more work to do here before this becomes a safe alternative.

“Stem Cells for Dummies” by Dr. Lawrence S.B. Goldstein (Yep – they even have a Dummies book on the topic).

Book Summary: Approximately 10,000 babies like Hudsyn are born with cerebral palsy every year. The United Cerebral Palsy Foundation estimates some 800,000 Americans live with at least one of the disease’s symptoms. Although it isn’t progressive like Alzheimer’s or ALS, it is permanent. Current treatments for cerebral palsy are limited to helping patients cope with or work around their symptoms. Early research, mainly in animal models, has indicated that stem cell transplants may be able to enhance the brain’s normal growth during early development. Cord blood’s immune cells aren’t as well developed, so there’s less chance of rejection or graft-versus-host disease when cord blood cells are used in treatment. There were some outdated pieces of information in this book, so I was careful to cross reference statistics and data where false/counter claims were made.

Dr. Joann Kurtzberg at Duke University continues to move the needle with the FDA here in the U.S. She has successfully performed clinical trials using umbilical cord stem cells on kids with cerebral palsy, resulting in and improvement in brain connectivity and motor function. Dr. Kurtzberg was the first to perform a reinfusion of cord blood stem cells as a treatment for cerebral palsy in the U.S. Thanks to a grant of $10.2 million dollars from the Robertson Foundation, Dr. Kurtzberg and her team have been able to continue their research. Like many scientific advances in medicine, the financial need to do it all is steep.

“We’ve learned that the cord blood cells given intravenously can make their way to the brain and help repair some of the damage,” said Dr. Jessica Sun, a Duke pediatric hematologist/oncologist.

Then there’s Dr. Evan Snyder, a pediatrician from the Burnham Institute for Medical Research in California…he gives several talks (you can search for him on YouTube or Google) about the basics of stem cells. I mostly like how he simplifies everything so you can understand this somewhat complex topic in cellular biology. If you can find them, his 3-D animated videos of neurons and brain cells are fascinating.

The Decision to Go to Panama

After nearly a year of research, praying and asking questions of her medical team here, we decided to take the leap of faith and give this therapy a try. Thousands of children all over the world have benefited from this therapy. We looked into research institutes and hospitals that offered this around the world. The ones that stood out to us and had the longest (and safest) outcomes were in China, India, Austria, Mexico, Ukraine, Indonesia, and Panama. Some had been doing stem cell injections as early as 2003. We decided to take Hudsyn to Panama for a few reasons:

• Dr. Riordan, the founder of Medistem and The Stem Cell Institute is actually from Wichita, KS! For some reason, this made us feel better about working with him – he’s originally from our home state.
• It’s in our same time zone so she won’t have to change her schedule drastically. Plus, the travel required isn’t too bad (four hour flight from Houston).
• Their success rate for kids with CP is fairly high (70-80%).
• We personally communicated with at least three parents who had taken their kiddos to the Stem Cell Institute, and all had a very good experience. None were paid by the clinic to give the testimonials and all but one have gone back multiple times.

First Trip: September 1-8, 2012 – Treatment Cost: $15,250 plus travel. My parents accompanied us, and although nervous, we were all really excited. If you’re doing the math, you’ll also realize (and see in the YouTube video) I was 6 months pregnant with Damek for this adventure. Let me tell you, using a public restroom in Panama while 6 months prego is a challenge all in itself! This was our most followed and documented trip. With nearly 100 supporters & fans of Hudsyn at the time, we raised $20,637.21 in less than 30 days, which covered the full cost of our trip.

Second Trip: July 6-13, 2013 – Treatment Cost: $13,900 plus travel. Our friend Melanie came with us on Hudsyn’s second treatment. We used savings, launched our first Bonfire t-shirt fundraising campaign…and my parents’ support to get us there financially. This time, we were traveling with not only Hudsyn, but a very busy, loud and non-sleep regulated 7-month old. Personally, I do NOT recommend this…but maybe that’s just me who was up every night while there with both kids. I don’t remember much about this visit, other than it was extremely difficult and I had been in between careers which caused further anxiety around our financial situation at the time. We also started seeing more U.S. friends from the CP and stem cell social media groups I was involved with. Panama became a popular destination for those of us with kids who had significant disabilities.

Third Trip: August 1-8, 2015 – Treatment Cost: $13,200 plus travel. The last (although, maybe not final) trip we made to Panama was specifically to treat the breakthrough seizures Hudsyn started having earlier that year. This time we went with our friends Julie & Joe Poorman whose daughter, Abigail, had also experienced an HIE event. Hudsyn’s Keto Diet wasn’t controlling as many of the larger seizures as it once had due to a recipe change in the formula. New medications were causing hospitalizations we hadn’t planned on, and we were feeling helpless, yet again, to her Lennox Gestaut epilepsy. More savings were used and more fundraising occurred. Even though I was still in the first, tender few years of my financial planning business, we made it happen.

The Costs

Our investment in Hudsyn’s recovery has been significant. Each trip to Panama cost between $15,000-$20,000 in total with airfare, accommodations, meals and treatment. The treatments alone have totaled $42,350, none of which private insurance or Medicaid/Medicare covers. In fact, I’m not sure we’ll see stem cells and regenerative medicine in the U.S. until either pharmaceutical or insurance companies can get a piece of the pie. In the meantime, considering the benefits we’ve seen, this has been a small price to pay for Hudsyn’s well-being.

Another “hidden” cost I’d like to state here is the time away from work or your own business while there. Although communication and internet are adequate in Panama, WiFi can be spotty and international cell phone charges can add up. Do your homework when you estimate the cost of international travel for your family if you’re considering this as an option.

The Results

Kids like Mary, Lillian, Cadence and Rebecca have all seen benefits of regenerative medicine…and so has Hudsyn. I want to emphasize here, that stem cell therapy is definitely not a single cure (yet). And the science behind this treatment has a long way to go in order to be considered “perfected.” But after now having gone to Panama three times and Hudsyn receiving 30-40 million umbilical cord stem cells at each visit, we can confidently say its been her most successful alternative therapy we’ve tried. 

Many families opt for multiple stem cell treatments to gain the maximum benefits of the therapy. It’s not a “one & done,” type of injection. There’s also evidence that doing “boot-camp” like therapy sessions after receiving the cells produces even greater benefit. The doctors in Panama described it like Hudsyn had received a bunch of steroids and was a new bodybuilder. As a result, she needed to work hard to build her “new brain muscles” while they were being stimulated and growing at a rapid rate. We also heard this same feedback from many of the families who had been to Panama and said the added therapies were vital to successful results. We planned accordingly and Hudsyn received daily & weekly intensive programs with physical, occupational, vision and speech therapies for up to a month after each trip.

First Trip Results: Pretty immediately we noticed more smiling, vocalization and overall better sleep. We saw massive seizure reduction after about 6 months post-stem cells. At the time, she had been averaging 6-10 seizures a day even after being on multiple anti-seizure medications and the Ketogenic Diet. With both stem cells and the Keto Diet working together, her average per day reduced to 2-3 for many months that first year. Her field of vision went from 20% (pre-stem cells) to 100% (post stem cells). I still remember her vision therapist looking at me suprisingly, and asking what had changed since her last testing. We also had reports from her various PT, OT, Speech and vision therapists (none of whom we told that she would be getting stem cells) that she had large gains during her 3-month intensive therapy sessions they claimed were “remarkable” for a child with Hudsyn’s level of brain injury. 

Second Trip Results: We, once again, did intensive therapies right after returning home. And, by October (3 months post stem cell injections), Hudsyn began rolling over on command. We noticed her hands being much more relaxed and open rather than being fisted, although this is still a battle we fight due to her intense spasticity. Laughter became a regular occurrence. The sound of Hudsyn giggling is still the happiest thing I’ve ever heard. Vocalization again increased and we heard her consistently responding to familiar voices when prompted. Finally, and the largest gain we’ve seen to date: All seizures had stopped for nearly a year. We removed all anti-seizure medications and continued only with the Ketogenic Diet.

Third Trip Results: We knew stem cells helped her epilepsy as evidenced by our previous trips. So, we went back a third time, specifically to combat the breakthrough seizures she started having. Even though I was heartbroken to have to put her back on Topamax, I was anxious to get the cells that so frequently before now had boosted her quality of life. Hudsyn was almost five years old when she received her last stem cell treatment. Her intensive therapy once home was to do a month of HBOT (Hyperbaric Oxygen Therapy) in Kansas City. We, once again, saw seizure reduction, better sleep and an improvement in things like overall cognitive function. But the biggest gain from this trip was her communication. She began consistently and effectively using the switches and other adaptive communication devices during therapy. Before this, she was hit & miss when presented with these tools. We started hoping she might be able to tell us “yes” or “no” in response to questions we posed. Dan still believes if this can happen regularly, we know we can do everything else for her. Learning what’s in her mind and “who” she really is becoming are all priorities we have for Miss H now.

The Future

Umbilical-cord stem cell therapy appears to be amassing a respectable track record in terms of both safety and clinical utility. Again, to say that stem cells are a complete cure is definitely false. But to say they have improved Hudsyn’s quality of life is certainly true. We believe the combination of intense PT, OT, speech and vision therapy (with stem cells being at the primary level of the treatment plan) have not only helped Hudsyn repair some of her original brain damage, we know they’ve allowed her to make exponential leaps in shorter periods of time.

That’s why after Damek was born, we banked his cord blood. We know this treatment isn’t available as a donor yet in the U.S., but it’s coming. And, we wanted to have Damek’s cells available for her (or even him) when that opportunity presented itself. CBR is who we chose to work with because of their vast network of couriers which ensured Damek’s cord blood would be banked within 19 hours after his birth. I also love their online access, referral program and consistent involvement in regenerative medicine and clinical trials.

When asked about why we use stem cells as a treatment for Hudsyn, I definitely state the advantages. But, do your homework. Talk to your physicians and medical team. Join some of the social media groups (like Stem Cells for HIE which I started with my friend Dawn) so you can explore this option with parents who have been there. And, I’m more than happy to share more about our journey if you have questions…please post them in the comments and I’ll respond as soon as I can!