Our patient stories.

Arminda Bourin has suffered from rheumatoid arthritis since 2003. She underwent adult stem cell therapy at the Stem Cell Institute in February 2012 because her swollen, painful ankles made it very difficult for her to walk. This interview takes place approximately one year after treatment.

Before coming to Panama, Ms. Bourin tried everything from anti-inflammatory and auto-immune medication to homeopathy and finally surgery on her left ankle, “Which I regret because if I had waited [until after the stem cell therapy], it would not have been necessary. The other foot with the same symptoms is now better without any surgery. I think it was the stem cells.”

Ms. Bourin learned about the Stem Cell Institute from her husband’s cousin, Judi Lecoq. Judy received treatment for multiple sclerosis and, “…told us how wonderful the treatment was and that she was so much better.”

Regarding the doctors, staff and clinic, “They are wonderful. Everybody has been so kind.”

Upon being asked, “Has this treatment changed your life?” Ms. Bourin responded, “Well, yes. I was not walking too much. I needed a wheelchair. It was painful anyway. So to be able to go shopping, that’s a miracle!”

Sarah Washington and her daughter Mary. Mary is 2 years old and was diagnosed with cerebral palsy when she was 4 months old. She was first treated at the Stem Cell Institute in Panama using human umbilical cord-derived stem cells. Mary received these stem cells intravenously over the course of 4 days. Her first treatment was in September of 2012. This interview was recorded in March 2013 at the clinic while she was there for a second round of treatments.

What kind of improvements have you noticed?

Overall, in general, what we noticed was, her upper body, she’s very stiff. She’s spastic in her legs and her arms and she has low tone in her trunk. In her upper body, we noticed a pretty significant improvement. Her range of motion, she couldn’t lift her arms over her before and now she can do that on both sides easily. And her hands, she was in tight little fists most of the time, whereas now if she is in a fist it’s very loose. But most of the time she kind of has her hands relaxed. That was a big improvement for us; small but significant for our family.

Her vision has improved, not necessarily distance but as far as like what I think as seeing details. So she would be able to tell the difference between you and me if we didn’t say anything. Whereas before, I don’t think she could do that. She would rely on smell and hearing more than her vision. Now she uses her vision a lot more. So that’s been an improvement that we’ve seen.
She is more involved in the world around her. [She] wants to be more involved in the world around her so that’s good. She has definitely, she doesn’t say, “mama, dada, ba, ba” yet but she definitely is making more vocalizations, making more sounds and trying to experiment with her voice, which is a positive thing.

She is trying different ways of communicating versus just screaming which is what she did before because that is all she knew how to do. And now, she is kind of fussing or sometimes she’ll just kind of like, yell and stop and wait for me to answer her instead of just going from “zero” to “scream”. So her communication has improved as well.

One thing that we were not expecting that we were pleased about is an improvement in her seizures. That wasn’t even something that we had even, I don’t know. I guess it just didn’t occur to us that maybe this would be helpful with that but before we came the first time in September she had been sick and we actually had to delay our trip twice because she had bronchialitis. She was just having a really hard time. And she was having a lot of seizures. We had to add a new seizure medicine to try to get them under control and she was having 6 or 7 short myotonic jerks every day. The first time we were here, by about Thursday, which was like day three of treatment, of stem cells we noticed that she hadn’t had a seizure that day. Whereas before, she was having 6 or 7 a day. And so, that was one thing. It was surprising but it was a nice surprise that those have improved since we’ve been here. She will still have breakthrough seizures every now and then when she’s sick, teething but she, we haven’t gone back to that, where she was having them on a regular basis. So that’s good. That’s been a good improvement.

Since we’ve been here this time, I haven’t really seen anything where I could say, “Oh, I think that’s the stem cells.” yet but I do know that last time it did take a couple of weeks for us to notice, you know, or to really pinpoint and say, “Yes, we think that is the stem cells. There’s no way she could have done that before.” So, and all of our therapists agree that her range of motion and her upper body for sure, and her vision would not have been the way they were without coming here.

Lillian Rowland is a 79 year-old [former] heart failure patient from Ohio. She was diagnosed with heart failure in March 2012. Her left ventricular ejection fraction (LVEF) at that time was measured at 25%. Normal LVEF range is 55% – 70%.

Lillian’s cardiologist recommended an implantable defibrillator. At the time, she did not want to go through the implantation procedure so she declined. Lillian decided to go to the Stem Cell Institute (SCI) in Panama for human umbilical cord-derived stem cell treatments after hearing about it from her son Jay Lenner who works for SCI as its Public Relations Manager.

Below is a brief interview with Lillian in March 2013. Today, her heart is back into normal range (LVEF = 55%) and her cardiologist told her that she no longer needs an implantable defibrillator.

What was your diagnosis?

I was diagnosed with heart failure.

When were you diagnosed?

I was diagnosed in March 2012.

What symptoms did you have?

I couldn’t breathe at night. I was sleeping and I had to get up. I was gasping for breath.

Why did you choose the Stem Cell Institute?

Because my son works in stem cells and after I got out of the hospital in Arizona he wanted to take me down to have stem cells to see if it could help repair the damage to my heart.

How where the doctors at the clinic?

The doctors were very nice and there’s really nothing to it. It’s just an injection that goes into [a catheter placed into a vein inside] your hand. It’s not like they are operating on you or anything.

How was the clinic?

The clinic is very clean and sterile and the people are very nice.

Do you have any symptoms now?

It’s been a year since I had the stem cells and I am symptom free.

I had an echocardiogram a year after the stem cells and when they read it my ejection fraction was 55%. They wanted to put a defibrillator in me and the heart doctor came up and said, there’s no reason to put one in now because my heart was OK.

Would you recommend that other heart failure patients go to Panama for treatment?

Yes I would.

Do you think this changed your life?

Yes. I don’t have to worry about having a heart problem!

The umbilical cord stem cells we use are recovered from donated umbilical cords following normal, healthy births. Before they are approved for use in treatments, all umbilical cord-derived stem cell samples are screened for viruses and bacteria to International Blood Bank standards.

Tracey Renneberg discusses her improvements following stem cell therapy for rheumatoid arthritis. Tracey is now in Panama multiple sclerosis treatment. “My rheumatoid arthritis is completely gone. This leg used to drag and now I can pick it up and walk. If patients have rheumatoid arthritis or MS, this is where they should be.”

After stem cell therapy at the Stem Cell Institute in Panama, C-6 incomplete spinal cord injury patient, Daniel Campbell describes how his condition has improved since his first treatment. Daniel is in Panama for his second treatment during this recording

“…The trajectory of my recovery drastically took an upward turn. I got grip back, got a lot stronger and my blood pressure issue sort of went out the window. My lower back started firing so when I lean back in my chair, I don’t just fall.

Most recently my hip flexors started firing in certain positions so I can assist the therapist while crawling. Bowel and bladder sensation has gotten better. I have hot and cold sensation in my hands now. Incontinence is a thing of the past.

If you haven’t been following our story on stem cells since the beginning, check out our previous blog posts first:

1. Exploring Stem Cell Therapy for Cerebral Palsy: This is how we came to our decision and provides lots of background research as to why we started down this path.
2. Panama City – Hudsyn’s Big Adventure: A recap of our trip and all that we experienced while there.
3. Hudsyn’s Stem Cell Therapy: 1-Month Update
4. Happy 2nd Birthday Miss H!: I wrote a letter to Hudsyn on her birthday…and near the end are a few other updates.
5. Hudsyn’s Stem Cell Therapy: 2-Month Update

So now that you’re fully caught up, I’m sure you’re anxious to hear about her most recent progress:

Improvements We’ve Seen

1. Extreme Seizure Reduction: While we had nearly a week of zero seizures (huge leap from the 6-10 she was averaging before stem cells), she broke her record and has averaged 1-2 per day since that week in November. But we’re so much more hopeful that between her Keto Diet and the stem cells, we’ve got things under control…finally. It makes me teary to fully embrace this accomplishment because two years ago, we were watching our little girl have 40-50 a DAY, rendering us helpless as her brain became severely affected by them. Even medications had failed to help her. And now…to for a moment think that we might have a future without seizures is, well, just amazing…a miracle. Praise God!

2. Physical Therapy/Occupational Therapy: I attended one of Hudsyn’s therapy sessions at RIKC Friday, Dec. 7. She bore weight on all fours (with the help of arm braces of course) for over 8 minutes without complaint…a new record! We really enjoy our relationship with the team of therapists at RIKC. Erin (her OT) and April (her speech therapist) adore Miss H….and both are often caught between appointments coming to talk to or hold Hudsyn before it’s her time to work with each of them. We hope we will be able to continue her regular sessions here throughout this year. It truly is one of the best, most prominent therapy centers we’ve worked with thus far.

Here, you can see Erin holding her iPad, working from an app called Ladybird Baby Touch. The physical therapist is bracing Hudsyn’s head here so she doesn’t move her body to get the penguin on the screen and instead has to use her arms independently. This is a lot of work…but she DOES it:

3. Increase in Responsiveness & Smiling: This is the fun one. I can’t tell you how much joy it brings to see her interacting with more people now. We’d see this every so often (maybe once a day) before stem cells. Now…it’s on demand. If you talk, hold, sing, read, etc to Miss H…you’ll likely get a big smile or some type of physical response from her. There’s a big personality inside that little body…and we are completely in love with it.

4. Social Interaction: Hudsyn continues to enjoy preschool at CCVI.

She participated in her first school Christmas program last month. I must admit, I was pretty emotional watching the event. Not only was the setup and organization behind something like this incredible, but I realized deep down that I didn’t think I’d ever get to be in the audience watching my 2 year-old daughter shake jingle bells and be on stage with all the other kids in preschool. I had really come to a place where I’d accepted that she wasn’t going to be normal…that she wouldn’t be able to give us the joy of watching a holiday music program. But there she was, sitting on one of her therapist’s lap while thrusting her whole upper body forward, working hard to shake her bells as everyone sang the familiar songs.

Yeah, I bawled like a baby. I’m sure the folks sitting next to me understood – either they wrote me off as a 9-month pregnant woman being emotional or they were teary right along with me. There were several wet faces in the audience that night. It was a wonderful holiday gift from our little girl. And, after the program, Hudsyn got to meet Santa for the first time!

Some Backsliding
Her frequent vomiting is back. But we really believe this is a result of the winter weather, thus contributing to some nasal mucous that is building up in the back of her throat and causing her to gag/vomit during key times of the day. These times are usually in the morning and then again in the evening. The vomiting isn’t the same as it was before, though. It’s not projectile, but instead a real puke…like you and I would do if our stomach was upset or we had something caught in our throat. She gives warning signals before doing it, so that’s been helpful in getting her to the bathroom sink on many occasions.

Another thought Dan had was these scheduled pukes are happening about 30-45 minutes after we give her meds. You can time it almost exactly every morning and evening. We discussed this with Dr. A (her neurologist) last week at her regular Keto Diet follow up appointment. Dan wondered if maybe the meds are causing this reaction whereas before her brain was more in need of them than after stem cells. So we were hoping to begin eliminating this drug, especially since the sharp decline in her seizures. Keppra in particular causes dizziness and nauseousness as side effects – even in small doses.

Dr. A agreed to begin slowly weaning her off Keppra and we’re happy to report that in one short month, she will be rid of it and all its side effects. We’ve also eliminated her Citicholine as it had some similar side effects and we weren’t seeing much benefit to this supplement any longer.

Treating the mucous is a bit harder. She can’t have regular expectorants or decongestants like you and I because of the Keto Diet. So, we’ve upped her water intake significantly which will hopefully help to thin it out. I’m glad we did it when we did because the next few days after her neuro appointment were awful. Miss H contracted the flu and a nasty cough coupled with a 102 degree fever. Tis the season! Thankfully, this time we were able to avoid being inpatient, mainly because of her G-tube and that we could force water, food and meds in her without putting them in her mouth. Without it, she would’ve been in the hospital. This time last year we were fretting about whether to do the G-tube surgery or not…and now…we don’t regret it one bit.

Miss H is still battling the cold/cough, but we’re happy to report her fever broke and the vomiting has decreased enough that she’s on full feeds again.

The last “backslide” that we’ve seen is one we’re actually happy about. Miss H has taken to some behavior much like that of a typical 2-year old in that bedtime is a huge fight. We used to be able to lay her down and many nights she’d go to sleep quietly. It’s predictable now that she’ll cry 30-90 minutes straight while attempting to go to sleep. She’s also learned during the day to manipulate anyone nearby (but especially her parents & grandparents) when/if she’s bored, she’ll fuss or fake coughing to get attention. The most recent incident of this was running an errand to Children’s Mercy, Dan captured this:

While most parents would complain or be annoyed by this behavior, we’re THRILLED. This is just more of her personality and desire coming out to communicate with us…and we couldn’t be happier as a result.

Overall Thoughts on Stem Cell Therapy for Cerebral Palsy
We’re now over halfway into our post-stem cell therapy journey with this being month 4 of 6. After six months from her first visit, Miss H is eligible to go back to Panama for another round of stem cell IV injections. Many of her fans, like you, have wondered if we’re planning to go again. We’ve been discussing this extensively with Dr. A, who has several other patients curious about the treatment. In addition to sending him journal articles and published academic studies from the Panama doctors we’ve showed him several of Hudsyn’s videos, her seizure tracking chart (above) and how she responds to our voices with smiling and interaction. He’s been amazed at her progress and obviously is very pleased. His only question is whether these improvements are a result of the stem cells or of normal development she would’ve had anyway. This exact question is the primary point of the clinical phase II trial Duke University is doing right now.

As her parents, we have to force ourselves to look at this objectively. Because in our heart of hearts, and after everything we’ve been through as a family…and everything Hudsyn has had to endure medically, we really just want this to work. With that perspective in mind, we’d love nothing more than to be able to say that umbilical cord blood stem cells are a “cure.” But we feel strongly that the science needs more research and development before we’re to that claim.

We will, however, say with the below evidence, Miss H would’ve never seen this kind of development in such a short period of time without stem cells.

• Her field of vision went from 20% to 100% in less than 3 weeks.
• Seizures became nearly non-existent after two months. As a result, anti-seizure medications (and all their “fun” side effects) are being discontinued.
• Vocalization, eye contact and general responsiveness improved significantly within 1 month.
• PT, OT, Speech and vision therapists documented large enough gains during her 3-month therapy visits that they claim are “remarkable” for a child with Hudsyn’s brain injury. With no other changes to her treatment, we must look at stem cells as helping with these gains.

To say that stem cells are a complete cure is false. But to say they have improved her 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 Miss H repair some of her original brain damage, we know they’re allowing her to make exponential leaps in shorter periods of time.

As a parent who knows this treatment works…and knows its available for those who seek it out, the question remains…

Will we go to Panama again? We can faithfully and loudly declare: Hell yes.

Daniel is presented anonymously in the paper, but Rebecca and Daniel have given their permission for this paper to be shared. Daniel’s ASIA scores (pre and post treatment) are in the appendix of this paper.

Allogeneic and autogolous stem cell therapy combined with physical rehabilitation: A case report on a chronically injured man with quadriplegia

Abstract:

Background and Purpose: Stem cell therapy for SCI is a potentially promising treatment with increasing interest. This case report describes the use of a particular stem cell therapy protocol for a patient with chronic spinal cord injury, and describes his subsequent therapy and outcomes.

Case Description: The patient is a 29-year-old male who is chronically injured from a cervical spinal injury, resulting in quadriplegia. The patient was treated with a combined protocol of intrathecal (IT) and intravaneous (IV) allogeneic MSC and CD34+ cells and IT autologous BMMC at 6 ½ years post-injury. The results track the patient’s physical therapy progress until 6 months following stem cell treatment.

Outcomes: Recovery of strength in upper extremity and lower extremity muscle groups was noted, along with a functional increase in grip strength, ability to ambulate with assistance, and a significant decrease in daily medications.
Discussion: This case supports further investigation into treatment of chronically injured SCI patients with stem cell therapy followed by physical therapy.

Manuscript word count: 4321

A few highlights:

“After the patient underwent the stem cell treatment and returned to outpatient physical therapy in his hometown clinic in the United States, his MMT scores were tested over the period of 5 months post-stem cell treatment…. The patient did not decrease in strength in any of the muscles tested, and experienced improvements in 6/13 upper extremity muscle groups, and 8/9 lower extremity muscle groups.”

“The patient also had an increase in grip strength. His grip strength was measured by his occupational therapist to be 5 lbs on the right and 25 lbs on the left at one month before his stem cell treatment. Six months later, his grip strength was measured to be 22 lbs on the right and 36 lbs on the left. The patient reported that this increase in grip strength led to functional improvements, such as being able to self-catheterize, which he was completely unable to do since his injury.”

“The patient was also able to ambulate for the first time in 5 years at approximately 4 months after finishing his treatment. He was able to ambulate in partial weight bearing with the harness and max assist of two for 40 yards at .5 MPH.”

The original post on Daniel Leonard’s blog can be found here.

A trip overseas is in the works for a seven year old boy named Matthew from Central Florida. The boy and his family are traveling not for a vacation, but with the hope of curing the boys autism, which was diagnosed when he was 18 months old.

“He wasn’t born with autism,” Matthew’s father Daniel Faiella said.

Matthew began to lose his ability to speak as he got older.

The last few months have shown promise. He is beginning to interact with others and can now draw. This change in behavior can more than likely be attributed his use of a hyperbaric chamber to increase blood flow and get more oxygen to his brain.

While researching their son’s condition, Matthew’s parents learned of a non-controversial stem cell treatment being offered in Central America. The stem cells used at the Central American clinic are harvested from umbilical cord blood, and not embryos.

The Faiella’s believe that much like the chamber, the stem cells will help repair the damage, but at a much faster rate.

“In essence, adult stem cells are creating more blood vessels to the brain, more oxygen to he brain, where it’s rejuvenating brain cells,” Faiella said.

The family expects the potential of a full recovery to be within grasp. Earlier this year, a South Florida girl made tremendous improvement following treatment for autism at the Institute of Cellular Medicine.

“He’s reaching back through his world, and we’re reaching back and we’re grabbing a hold of him,” said Matthew’s father.

At the end of February 2008, Matthew and his parents will depart on their journey.