The Panama Experience

A little back story to put the article in context.

I’m married and have two small children: Evan, aged two, and Harper, a 4-year-old girl. Harper is profoundly autistic. She is non-verbal, isn’t able to follow most basic instructions, and is a definite flight risk. She is incredibly energetic. If she’s awake, she has to move. She needs to always be swinging, twirling, and stimming.

Stimming is the self-stimulating behavior that is characteristic for most autistic children: hand-flapping, finger-flicking, rocking, etc. Harper’s stim is grabbing and shaking anything she can, bolted down or not.

Autism is a developmental and functional disorder that can range from mild to severe and is also referred to as autism spectrum disorder (ASD). Children and adults on one end of the spectrum may just be socially awkward with some difficulty communicating but are still highly functional; and on the other end of the spectrum, like Harper, that are non-verbal and can’t do much for themselves. Or somewhere in between.

The cause of autism is unknown or at best, speculative. Theories range from environmental poisoning, nutritional deficits, to genetics. Treatment is also very subjective in its effectiveness. The standard treatment is ABA therapy: 40 hours a week of repetitive behavior modification training and occupational therapy. This is often compared to dog training.

There are no drugs for autism, just medications for symptoms like sleeplessness and anxiety. Stem cell treatment, however, has shown some promise. Trials for stems cells therapy for autism in the US have been limited with mixed results. The FDA considers stem cell therapy unsafe and illegitimate. There a no FDA approved stem cell programs in the US other than blood stem cell transplants for some cancer treatment.

Stem Cell Institute Panama

The Stem Cell Institute (https://www.cellmedicine.com ) in Panama City, Panama has been operating for over 15 years. They treat a wide range of disorders including autism and cerebral palsy.

I’m not a doctor or biologist, so I’m not qualified to explain how or why it works. But after literally years of following parent groups and reading and hearing testimonies of how their children improved after receiving stem cell infusions from this place, my wife and I agreed we would be remiss if we could and didn’t.

It’s a difficult decision. First, it’s very expensive. First treatment for autism costs around $16K. That does include the hotel and not the plane tickets. Treatment for adults is $28K or more.

Second, there’s no guarantee that it will do anything for the first go-around or possibly work at all. It’s a huge financial and an even greater emotional risk.

To pay for this, we initially set up a GoFundMe campaign with a target of $30K. A link was shared on Facebook and tucked into a LinkedIn article (https://www.dhirubhai.net/pulse/blatant-pitch-help-assistance-technology-explained-ron-van-til%3FtrackingId=XID3Qb5XI4Gt7rs2NtF7mw%253D%253D/?trackingId=XID3Qb5XI4Gt7rs2NtF7mw%3D%3D ).

We were very fortunate to have much of the cost covered. We raised about $13K with the GoFundMe campaign, mainly from friends and family. Another big chunk came from an inheritance and the rest we were able to pay for ourselves.

Our journey

Traveling with children, and especially ours, can be a challenge and a recipe for disaster. ?Asking them to sit still for longs stretches and be compliant and content is almost impossible. My wife planned out snacks and games to keep them happy on the plane, but we braced ourselves for the nightmare that was surely to come.

Fortunately, there’s a direct flight from Houston to Panama City. It’s a 3?-hour flight there, and roughly 4 hours back. We departed from terminal E, the international terminal at Houston Intercontinental Airport. We brought 3 suitcases, 2 strollers, and a couple of overstuffed carry-on bags with snacks and toys.

What ever happened to porters?

My game plan to manage the suitcases was to get a porter to help wrangle them to the check-in counter. Apparently, that’s not a thing anymore. Instead, we found an abandoned cart, loaded it up and made our way to the United counter.

We had signed up ahead of time with TSA Cares, a program that provides assistance to get through security for those with special needs. Surprisingly, there were very few people at the security checkpoint and we made it through without incident, with more than 2-hours before our departure time. Harper danced around the terminal till it was ready to board.

The flight we had dreaded so much was relatively uneventful, and we landed in Panama City on time. We were met by an agent hired by the Stem Cell Institute who helped us get through immigration. Our kids got their first stamp on their passports!

The Institute also arranged for transportation to the Hilton Hotel. Before we knew it, we were checked into our room.

Fast-forward to the trip back: delightfully uneventful as well. Panama City’s airport is modern and clean. There’s a second security point for international flights at the gate. As you can’t take liquids through security, we poured out a lot of water, including the water we bought inside the airport. No issues on the plane, and we arrived back in Houston ahead of our scheduled time.

The traveling nightmare we had braced for didn’t materialize. All went amazingly smoothly and as planned. Spooky.

Traveling tips.

My wife came across these on Facebook Marketplace: GB strollers (https://gb-online.com/en-us ). These were awesome for travelling. They’re inexpensive, very light-weight, and fully collapsible strollers that are narrow enough to fit through the isle on the plane and collapsed easily to store in the overhead bin. We also found some brackets to connect them together to make a double side-by-side stroller.

The other item that worked well and gave us a lot of peace of mind was that we put both children in harnesses with a leash. We could keep both of them close by without them wandering off, especially when our focus was on figuring out where to navigate.

Panama

The Panama is a relatively small country with 4-million people. The economy is based almost entirely on the service industry and operating the Panama Canal. Panama’s banking sector is also a huge part of its economy and operates similar to Switzerland.

Roughly a third of the population lives in the capital, Panama City, has which has exploded in the past 20 years. Panama took over full operations of the Canal in 2000 and the current skyline of towering glass buildings just didn’t exist before then. The prevailing currency is the US dollar, which makes it easy for American travelers, and cost are relatively on par with costs in the US.

With two small children, we didn’t venture too far from the hotel. With the help of our awesome tour guide, Oscar Fernadez ([email protected] ), we took a few outings to explore the city, the canal, and the nearby Smithsonian nature center.

This is a not intended to be travel guide for Panama or a history lesson. But here are two facts of interest: (1) Though plenty of people there take to walking in the city, the sidewalks in Panama City are horrible. Even with our nibble GB strollers, it was a challenge to get around on foot. (2) There are no roads or railways that lead into neighboring Columbia. None.

The Stem Cell Institute is conveniently connected to the Hilton Hotel where we stayed. We mostly ate at the hotel restaurants, but there were a few stores within minutes of the hotel where we could get fresh fruit (https://www.foodiemarketpanama.com ) and included the local Farmacias Arrocha, a Walgreens style pharmacy that carried, off all things, the diapers we had packed an entire suitcase full of.

I hate to admit it, but we also Uber’d McDonald's and pizza to the hotel a few times.

Because we had most of the day free, we spent several hours each day at the hotel pool. This is where we met many of the other parents with autistic children. Several where from the US, but others came from Canada, Ireland, and one came from Australia. For a few, this was their second or third trip for treatment.

Stem Cell Therapy

There’s not a blood test or anything measurable that shows what this stem cell treatment improves or does. Success is anecdotal and perspective. Essentially, we are hoping for changes in behavior, like being able to focus and perform a task, more awareness and to be able to follow instructions, or even possibly carry on a conversation: the basic things for our daughter to function in society and take care of herself.

All the parents we met at the Hilton had the same hope. The returning parents would tell us that their child was like ours and now will actually stay with them and not run off or is now speaking sentences.

It’s the mission of every parent of an autistic child to explore every opportunity to help their child be better: to be able to communicate, to be aware of their surroundings, and to be safe and function in society. My wife has been our daughter’s champion: exploring diets, supplements, therapies, etc. anything that might remotely help her.

A huge challenge is one that faces all of us: the vast trove of misleading and false information on the Internet, as well as predatory services and products that feed on our paranoia and insecurity of missing out on the one thing that might actually work. ?

The decision to try stem cells wasn’t taken lightly. We went to a foreign country and injected a foreign substance into our child, despite concerns and warnings from the FDA about “rogue” facilities, and with no assurance that it will actually work. It was a huge leap of faith.

But it was an educated leap of faith. I still held my reservation till I met these other parents on the same journey. They offered the hope and reassurance that we were doing the right thing. This wasn’t some radical experiment.

But now we wait. We will likely be going back.

If you have any question about this, or would like more detailed information, please reach out to me at [email protected]

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