Robert’s journey is about preserving and improving life. One should never have to take an innocent life to preserve or improve the life of another. We will never use embryonic stem cells and refuse to have Robert used as an ‘endorsement’ for them. Robert has only been treated with ‘adult’ stem cells, most of which were harvested from his own bone marrow and fat. Embryonic stem cells do not appear to have the therapeutic benefits that adult stem cells provide, and they come with some wicked side effects. God is not mocked.
We began our stem cell journey as we did our brain injury journey, ignorant. We became aware of other brain injury families that were pursuing stem cell therapy and studied what they were doing. The conventional wisdom seems to be regular stem cell transplants (every 4-6 months) for 2-3 years. HBOT immediately preceding transplant appears to greatly improve the number of stem cells harvested and the effectiveness of the transplant. Each transplant is followed by an intensive therapy session.
The politics and licensing of stem cell therapies in the US has made effective stem cell therapy almost impossible to obtain here.
Stem Cell Institute, Panama
In business there are two ways to get experience – earn it or buy it. As with HBOT, we didn’t have the time for experimentation so we looked for those with the experience.
Early in our research, I was given an interview done with Dr. Neil Riordan. As we researched more, Dr. Riordan’s name continued to pop up. I eventually bought his book and after reading it, we were off to Panama. Stem Cell Institute
Our experience in Panama was flawless. Robert received 40 million expanded stem cells from donated umbilical cords. These cells were administered by IV over a period of four days. As all patients are housed in the same hotel, we got to meet families from all over the world and compare notes on various therapies and treatments.
While we saw many general gains in Robert’s condition, we saw great improvement in Robert’s eyesight. When we got home from HBOT in New Orleans, Robert was evaluated for Cortical Visual Impairment (CVI). CVI is blindness caused by damage to the vision center in the brain versus the eye or optical nerve. Robert did not score well and we were told he would have lifelong difficulty picking objects out against a cluttered background and would probably be considered legally blind. Robert now has excellent vision and is able to quickly pick family members out of a crowd.
The only drawbacks to Panama were the cost of the therapy (USD$16,000 in 2018) and the logistics of traveling by air with a brain injured child.
While we chose Stem Cell Institute entirely on reputation, we continued to research other options. One of the concerns with IV administration of stem cells is that the cells may or may not cross the blood-brain barrier in numbers sufficient to be therapeutic.
HOST in Monterrey, Mexico is an outpatient stem cell clinic associated with and housed within the teaching hospital at the University of Neuvo Leon. The University stem cell laboratory is FACT accredited – one of only two accredited labs in Latin America.
The HOST method involves stimulating the patient’s bone marrow to produce more cells, including stem cells. The bone marrow is then extracted, separated and the stem cells injected directly into the cerebral-spinal fluid via a lumbar puncture. The red blood cells are transfused back into the blood as they contain some residual stem cells. This method is far more invasive than the protocol in Panama but the bulk of the stem cells have direct access to the brain. The safety and efficacy studies for this protocol are all FDA* registered and were completed by the same doctors that now administer the HOST programs. (* – The US Food and Drug Administration. The government bureaucracy tasked with evaluating drug safety and efficacy testing.)
Because the protocol uses the patient’s own, minimally manipulated stem cells the risk of complication is very low.
HOST costs approximately half of what Panama cost and logistically is in our ‘back yard’, being a quick one-hour flight from Houston. All in-country logistics are handled by HOST and families are housed in a dedicated apartment building near the hospital. As in Panama, the common lodging allows for fellowship among families and the sharing of information.
We have now taken Robert to HOST three times and seen gains each time. The common advice is that the period of greatest change is approximately four months after transfusion with the gains plateauing at approximately six months after transfusion. However, we have seen immediate gains each time we’ve gone to HOST followed by a period of intense improvement at four months after transfusion.
Finally, and in contrast to the regulatory and cost burdens associated with stem cell therapy in the US, one of HOST’s stated goals in developing their minimally manipulated protocol is that it can be done using a relatively simple lab. This allows the healing power of stem cells to be used throughout the world, including developing countries.
Total Wellness Medical Center, Arizona, USA
At the same time that we began considering HOST in Mexico we were made aware of Dr. Kenneth Proefrock (Dr. P) in Arizona. We contacted his office and were told that the waiting list to see Dr. P was three years long and had just been suspended. While this was frustrating it made the decision to go to HOST much easier.
Fast forward to the Spring of 2020, our return from our third trip to HOST and the onset of the COVID Crazies; We were concerned that we would be unable to go to HOST in the Fall for Robert’s regularly scheduled transplant when out of the blue we got a call from Dr. P’s office. His daughter explained that Robert was the last child to be placed on the waiting list when it was shut down and that Arizona was viewed as a COVID hot spot and therefore Dr. P had suffered a large number of cancellations. This led to her asking us if we were still interested and if we would like to complete the application and interview process to be considered for treatment. YES!
Before I explain the process and discuss the results with Dr. P, I have to make some things clear about HOST. We love Mexico. We love Dr. C (Dr. Consuelo Mancías-Guerra). Except for having found Dr. P, we would go back to Mexico in a heartbeat. Dr. P speaks highly of Dr. C and her program in Mexico and recommends ‘layering’ stem cells. Layering is the use of multiple types of stem cells to treat an injury – bone marrow, fat derived and umbilical cord stem cells. While we will not use umbilical cells again, even Dr. P recommends that we return to see Dr. C, and our friends at HOST, from time to time.
Dr. P’s protocol is similar to the protocol used at HOST with some critical differences. There is no stimulation period, the entire procedure is completed in half a day versus a week in Mexico. The procedure is completed using local anesthesia versus general anesthesia (twice) in Mexico. Because of these differences, I view Dr. P’s protocol as being physically much easier on Robert.
Dr. P extracts fat from one of the ‘love handles’ on the lower back. This is then broken down and the stem cells separated, washed and prepared for re-injection. The cells are re-injected into the Sacral Foramen. This is described as an ‘incubator’ for the cells and a low pressure reservoir for the CSF in the spine. Because of the re-injection location there is less risk of headache and vomiting, the most common side effects in Mexico.
The question is, “Does this simpler, less invasive protocol have similar results to HOST?” Having now been to Dr. P three times, we can answer “yes” to that question.
The only complaint we have heard about Dr. P is that there is very little information available on him and his practice. We asked about this and he explained that he practices under an experimental IRB and as such is prohibited from ‘advertising’ by the FDA. Apparently, having a website is considered advertising. However, Dr. P and his office staff have addressed all of the questions we have raised either by phone or by e-mail.