MARTINSBURG - Two years ago, the Kee family had never heard of a little town in Mexico called Nuevo Progresso, so obviously they didn't know what a great role it would play in their lives.
Brodie Kee, 20 months old, made his trip to Nuevo Progresso when he was only 14 months old. This wasn't a vacation to see the sights of Mexico, but a visit to a clinic called the International Stem Cell Institute.
"I had the perfect pregnancy. Nothing was wrong," said 20-year-old Kayla Kee, Brodie's mother. But two weeks before her due date, she became very ill and started having severe contractions. She noticed Brodie hadn't been moving as much as usual. The pain was so severe she decided to go to the emergency room, and after a through examination, her doctors at Ruby Memorial Hospital in Morgantown decided she needed an emergency Caesarean section because the baby's heart rate was extremely slow.
When he was born, Brodie wasn't breathing. Brodie's father, 22-year-old Adam Kee, said it took eight minutes to revive him. The doctor's recommended Brodie be immediately flown to Georgetown University Hospital in Washington, D.C., for a treatment called "total body cooling."
According to the Eunice Kennedy Shriver National Institute of Child Health and Human Development, body cooling is a procedure used to protect against brain injury in full-term infants born with birth asphyxia. The hope of body cooling is that it will increase the infant's chances for survival and possibly decrease the severity of neurological disability.
"The nurse at Georgetown told us Brodie had about a 10 percent chance of survival," said Rick Kee, Brodie's grandfather. They honestly didn't think he was going to make it.
For three days, Brodie was intubated and kept on a cooling blanket.
"He didn't move. He didn't cry. He didn't do anything," said Diane Kee, Brodie's grandmother.
After two weeks at Georgetown, Brodie was flown back to Ruby Memorial Hospital so he could be closer to home, where his parents are students at West Virginia University.
When Brodie returned to Ruby Memorial Hospital, Adam Kee said the medical staff painted a very grim picture for them.
"They gave him a 40 percent chance of living," he said. They were told that even if Brodie did survive, he may be blind and/or deaf, or never walk, talk or eat on his own."
To this day the Kees have no idea what happened to their baby - what made him so sick. They do know that whatever caused his asphyxia at birth now has caused him to have cerebral palsy.
The National Institute of Neurological Disorders and Stroke defines cerebral palsy as being "any one of a number of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination but don't worsen over time. ... It is caused by abnormalities in parts of the brain that control muscle movements. The most common (signs) are a lack of muscle coordination when performing voluntary movements; ... stiff or tight muscles and exaggerated reflexes (spasticity); walking with one foot or leg dragging; walking on the toes, a crouched gait, or a 'scissored' gait and muscle tone that is either too stiff or too floppy."
Brodie has the spasticity form of cerebral palsy, and before his trip to Mexico, he was very stiff and rigid.
What happened in Mexico? A miracle some might say.
Diane and Rick Kee are both nurses in the Martinsburg area, and during a seminar they attended in Morgantown for continuing education, they were introduced to stem cell research and what is being done to help diabetic patients.
Wondering what stem cell treatment might do for Brodie, the Kees started researching stem cell therapy and cerebral palsy.
"When we got home, we started searching on the Internet," Diane Kee said. "We saw they were doing stem cell treatment at Duke University and in Georgia, but you had to have the baby's cord blood and we didn't."
Kayla and Adam Kee said they had heard about saving their baby's cord blood after birth, but like most young parents, they didn't have the $2,000 needed to pay for it and actually never thought they would need it.
One day, feeling like they had exhausted all of their options, Diane Kee said she came across the Web site for the International Stem Cell Institute located in Nuevo Progresso, Mexico.
"A whole new world opened up to us," she said.
She read what the Web site had to say, then after speaking with the parent of a child in Florida who had the procedure, the Kees felt it was worth a try for Brodie.
"I was very skeptical," said Kayla Kee. "I thought, 'Oh my gosh - am I really about to do this?'"
Being very apprehensive, the Kees took a leap of faith and left for Nuevo Progresso with $10,000 to pay for Brodie's placental stem cell therapy treatment.
Nuevo Progress is located just across the southern tip of Texas in Mexico. The Kees actually stayed at a hotel in McAllen, Texas.
The Kees admit it was a little scary. There they were, going into a foreign country that has a violent reputation, while carrying a cashier's check.
They found that the International Stem Cell Institute is a very small operation made up of one doctor, a nurse and an office manager. Again, not very reassuring.
But once they met Rita Alexander, the office manager, and Dr. Gonzalez, they knew Brodie was in good hands.
"He was very sweet. Before the procedure, he made sure we didn't have any other questions," said Kayla. "You could see in his eyes that he really cared."
Although some of the equipment looked a little dated, the Kees said the office was very clean and the staff was very friendly.
Adam said Alexander told them that the worst that could happen was that nothing would happen, but the best that could happen was that they would see some sort of improvement in Brodie - and they have.
The entire procedure took only about a half-hour to complete. Brodie had four 1/4-inch incisions made - one in each arm and leg and one in his stomach. In the incision, Gonzalez placed placental and umbilical cord tissue containing stem cells. He then closed the incisions and the procedure was over. He used a local anesthetic for each incision and Brodie was awake the entire time, smiling and happy, his parents said.
Before the treatment, Brodie was not able to lie on his stomach. Adam Kee said his muscles would become very tense and he would arch his back, bowed up like a banana.
"I could tell he was in pain," said Kayla Kee. But ever since the treatment, Brodie has not had one episode of back arching and can even lie on his stomach now.
The Kees said they started noticing improvements in about two weeks.
"It was almost overnight," Adam Kee said.
Brodie had the procedure done last St. Patrick's Day, and his parents said he is a completely different child now.
Before Brodie had the stem cells placed into his stomach, he used to projectile vomit and couldn't keep any food down.
But now, his mother said he's eating well and has put on weight.
The Kees said they want to emphasize that the stem cells used for Brodie's treatment came from placental and umbilical cord tissue, not embryonic stem cells.
Diane Kee said the tissue used in the procedure goes through extensive testing, and because it does not have a blood type, stem cell treatment is not like an organ transplant - it is universal.
The Kees said that stem cell treatment is something that can be multiple times, depending on the illness being treated. For example, if someone has a degenerative disease, like rheumatoid arthritis, the patient must go back for follow-up treatments in order to maintain a certain level of health. If the disease is non-degenerative, like cerebral palsy, the patient can keep going back for treatment and hopefully continue getting positive results until the patient has reached full potential.
The Kees plan on returning to either Mexico or possibly Germany to continue Brodie's treatment.
Unfortunately the stem cell treatment and the trips involved are very expensive, and for two college students, it's more than just a financial stretch. That is why the Kees are planning several fundraising events in the future.
On Oct. 23, the Civitan Club is hosting a basket bingo at the Moose Lodge in Martinsburg. Diane Kee said she has a lot of Longaberger baskets she is donating to the cause.
Adam Kee said he went to high school with Nate Sowers, quarterback for the West Virginia Mountaineers, and he has given him three footballs to be signed by Noel Devine and other players on the team, that he will then raffle off.
The Kees hope the community fundraising efforts will help them pay for Brodie's treatment and travel costs.
When it comes to stem cell research, "new things are happening every day," said Diane Kee.
Even though patients might have to go out of the country at this point to seek treatment, the Kees want the community to know there are options out there for people struggling with a variety of diseases.
"I don't want people to hesitate because they're scared," said Kayla Kee.
As Diane Kee said, "We took a leap of faith," and it has certainly paid off.
Showing posts with label Stem cell. Show all posts
Showing posts with label Stem cell. Show all posts
23 August 2009
13 March 2009
To China for a cure
Mar 9, 2009 by Alexandra Shimo
China is not normally considered a world leader in surgical advances, but according to a number of its doctors (and the Canadian patients they’ve treated), it has leapfrogged ahead in stem cell treatments. A growing number of people are travelling to China for a $30,000 experimental treatment: stem cell injections. Most, like New Brunswicker Jean Christophe Haas, 40, decide to go because they have a debilitating illness and there isn’t much that Western medicine can do for them.
Haas has Machado-Joseph disease (MJD), a terminal neuromuscular disease that affects the body in a similar way to Parkinson’s, paralyzing it gradually. Although he was diagnosed 20 years ago, it took some years for the symptoms to become noticeable. At first, only his sense of balance and his coordination were affected. Then his speech began to suffer and he started slurring his words. In 2004, he had to stop work as an army mechanic because his motor skills were no longer up to par and, in the past couple of years, he started seeing double. His family felt an overwhelming sense of panic, especially because Haas’s mother had the same disease, and his grandmother died of it. His desperation was compounded by the sense that Canadian doctors had given up on him completely; one told him there was nothing to do but to accept his fate of an early death, says his wife, Cherie Haas. “It’s awful for a young man with a family to go in and hear that. It’s heartbreaking.”
Ms. Haas searched the Web and found stories of other MJD patients who seemed to have been helped by stem cell therapy at various Chinese hospitals. Many of these good news stories are posted on personal blogs or on the websites of the clinics offering the treatments. There are thousands of these testimonials, suggesting that hundreds of people go every year, says Timothy Caulfield, Canada Research Chair in Health Law and Policy at the University of Alberta, who has published studies on this issue.
Advertising on the Internet, these Chinese medical centres promise to treat a surprisingly extensive range of diseases and conditions, including ALS, autism, brain injuries, cerebral palsy, epilepsy, multiple sclerosis, Parkinson’s, spinal muscular atrophy, septo-optic dysplasia (which can cause seeing difficulties, blindness and mental retardation), spinal cord injuries and stroke. Foreigners are a major source of funds for the clinics. Some doctors like Dr. Huang Hongyun, a neuroscientist at Beijing Xishan Hospital, have treated many patients from outside China, including some from Canada, and he has published a number of papers in Chinese medical journals tracking patients pre- and post-procedure. And yet some North American doctors are critical of how the data was compiled, and skeptical of the treatments on offer.
Once Jean Haas decided to go, he told his plans to Guy Rouleau, a neurologist at Centre Hospitalier de l’Université de Montréal, who said there were slight risks of complications, and that it would probably be a waste of money. But otherwise he didn’t try to dissuade him. Raising the money for the trip was easier than expected: much of the town of Oromocto, N.B., pitched in to raise the $30,000, with neighbours’ kids shovelling driveways to help out, and the military and community organizations hosting breakfasts and fundraisers. In April 2007, he and his wife travelled to Shenzhen, China, and stayed a little more than a month. During that time, Haas had six injections of stem cells into his spine, and an intense program of physiotherapy, exercise, massage and acupuncture. The results were immediate, he says—his balance improved just a few hours after the first procedure. Back in Canada, his neurologist confirmed that Haas had indeed gotten better: he had about 10 to 15 per cent more movement, according to Rouleau, who examined him before and after the trip. It’s difficult to speculate why this occurred, but Rouleau believes the intense physiotherapy was the primary cause.
When the couple returned from China, they wrote about their experience on the Web. Word got around, and soon hundreds of people were calling them, Cherie says. A couple whose husband had a similar neurodegenerative disease even drove from Quebec to see them, and the man subsequently decided to make the stem cell trip. Another couple flew in from Taber, Alta., and decided to go to China after seeing the home videos of Haas’s progress. Those gains were partly due to the attitude of Chinese doctors, Cherie believes. They would tell Haas to push himself to his limit and even try to “retrain his brain,” she explains. “We saw miracles while we were over there. We put the word out because I know this works.”
Even if patients experience gains, it’s important to determine whether they are from the treatment, the exercise program or a more positive frame of mind. Any advances could be merely the placebo effect, as people often feel better after being treated, even if the procedure hasn’t worked and the gains won’t last, explains John Steeves, a professor at the college for interdisciplinary studies at the University of British Columbia who specializes in spinal cord injuries. Finding out whether any treatment really works requires clinical trials, and although Dr. Huang has published the results of his trials in Chinese medical journals, this data does not conform to international standards of medical analysis. Indeed, Steeves believes Huang deliberately flouts these standards to help his bottom line. “Dr. Huang has no interest doing a valid clinical trial because if it doesn’t give him good results, his income would dry up immediately,” he says from his Vancouver office.
Patients, like Haas, who seem to have been helped by stem cell treatments, are often eager to share their stories. They may become advocates for the Chinese medical centres; Haas’s story is publicized on the website of the company that organized his medical tourism trip. By contrast, it’s more difficult to find people who haven’t gotten better, or are worse after spending $30,000 on an experimental procedure. This might be because they feel duped, or because the Chinese stem cell treatment emphasizes empowerment—a “you can do it attitude.” Those who can’t “do it,” who go through the rigorous training program and end up no better off, may feel unlucky, cheated, or they may take the lack of success personally and feel that they have somehow failed.
Missouri resident Jeff Carneal, 38, doesn’t feel like a failure, but having spent so much money, he is frustrated and disappointed. He lost the use of his legs when he fell off a stepladder while fixing his father’s barn. He has spent the past six years working with different doctors trying to learn to walk again, even flying to Quito, Ecuador, for an experimental operation (nerves were removed from his legs and grafted onto his spinal cord, which cost a lot, but didn’t really help). When a Maclean’s reporter first met Carneal at the Beijing Xishan Hospital after stem cell treatment, he was enthusiastic and believed the operation he’d had a couple of weeks earlier had alleviated some of the shearing leg pain he’d felt ever since his accident. But when contacted a few weeks after he returned to the United States, he was more downbeat, and said the operation hadn’t really made any difference.
Negative outcomes aren’t widely reported, but they are more common than the Chinese hospitals would have you think, says James Guest, a professor of neurological surgery at the University of Miami. He visited Huang in Beijing in the summer of 2004 to sample and test the fluid being injected into foreign patients. The results were inconclusive, he says. Following this, he went a step further, and examined spinal cord injury patients pre- and post-treatment in China. The results, published in 2006 in the journal Neurorehabilitation and Neural Repair, make clear the difference between what the doctors see and what patients want to believe. Of the seven, six thought they recovered some limb movement, although in most cases the physicians measured very little difference.
A few had concrete gains: a 19-year-old had chronic, burning back pain that eased enough for the patient to stop taking painkillers. Another patient had fewer muscle spasms after the procedure and could angle his left hand a little more, although he phoned Guest six months later to say the surgery had not made any permanent difference. On the downside, there were also post-treatment complications: a 22-year-old contracted meningitis, pneumonia and gastrointestinal bleeding, which were managed with heavy medications, and another had a fever and confusion along with a drug rash. Guest is critical of the Chinese stem cell treatments: he believes some doctors are “motivated by profits” and “they place patients at risk for therapies which have minimal effect.”
Eight months after travelling to China, Haas was struggling with the symptoms of Machado-Joseph disease. He was having problems walking and was falling again. The family still had some money left over from their fundraisers, so they decided to make another trip to China, and took out a small loan. In March 2008, he and his wife went to China, this time to Qingdao in eastern China—the first hospital wouldn’t accept them since it was now prioritizing Chinese nationals over foreigners, explains Cherie. After four weeks of treatment, Haas had more energy and there were slight improvements in his balance and speech, he says. However, the gains lasted all of two months and today he’s just as bad as before the first trip. Nevertheless, despite the costs, and the dubious rates of success, the family would like to return again if they could afford it. “I would go tomorrow if we could,” Cherie says. “It gave people hope.”
China is not normally considered a world leader in surgical advances, but according to a number of its doctors (and the Canadian patients they’ve treated), it has leapfrogged ahead in stem cell treatments. A growing number of people are travelling to China for a $30,000 experimental treatment: stem cell injections. Most, like New Brunswicker Jean Christophe Haas, 40, decide to go because they have a debilitating illness and there isn’t much that Western medicine can do for them.
Haas has Machado-Joseph disease (MJD), a terminal neuromuscular disease that affects the body in a similar way to Parkinson’s, paralyzing it gradually. Although he was diagnosed 20 years ago, it took some years for the symptoms to become noticeable. At first, only his sense of balance and his coordination were affected. Then his speech began to suffer and he started slurring his words. In 2004, he had to stop work as an army mechanic because his motor skills were no longer up to par and, in the past couple of years, he started seeing double. His family felt an overwhelming sense of panic, especially because Haas’s mother had the same disease, and his grandmother died of it. His desperation was compounded by the sense that Canadian doctors had given up on him completely; one told him there was nothing to do but to accept his fate of an early death, says his wife, Cherie Haas. “It’s awful for a young man with a family to go in and hear that. It’s heartbreaking.”
Ms. Haas searched the Web and found stories of other MJD patients who seemed to have been helped by stem cell therapy at various Chinese hospitals. Many of these good news stories are posted on personal blogs or on the websites of the clinics offering the treatments. There are thousands of these testimonials, suggesting that hundreds of people go every year, says Timothy Caulfield, Canada Research Chair in Health Law and Policy at the University of Alberta, who has published studies on this issue.
Advertising on the Internet, these Chinese medical centres promise to treat a surprisingly extensive range of diseases and conditions, including ALS, autism, brain injuries, cerebral palsy, epilepsy, multiple sclerosis, Parkinson’s, spinal muscular atrophy, septo-optic dysplasia (which can cause seeing difficulties, blindness and mental retardation), spinal cord injuries and stroke. Foreigners are a major source of funds for the clinics. Some doctors like Dr. Huang Hongyun, a neuroscientist at Beijing Xishan Hospital, have treated many patients from outside China, including some from Canada, and he has published a number of papers in Chinese medical journals tracking patients pre- and post-procedure. And yet some North American doctors are critical of how the data was compiled, and skeptical of the treatments on offer.
Once Jean Haas decided to go, he told his plans to Guy Rouleau, a neurologist at Centre Hospitalier de l’Université de Montréal, who said there were slight risks of complications, and that it would probably be a waste of money. But otherwise he didn’t try to dissuade him. Raising the money for the trip was easier than expected: much of the town of Oromocto, N.B., pitched in to raise the $30,000, with neighbours’ kids shovelling driveways to help out, and the military and community organizations hosting breakfasts and fundraisers. In April 2007, he and his wife travelled to Shenzhen, China, and stayed a little more than a month. During that time, Haas had six injections of stem cells into his spine, and an intense program of physiotherapy, exercise, massage and acupuncture. The results were immediate, he says—his balance improved just a few hours after the first procedure. Back in Canada, his neurologist confirmed that Haas had indeed gotten better: he had about 10 to 15 per cent more movement, according to Rouleau, who examined him before and after the trip. It’s difficult to speculate why this occurred, but Rouleau believes the intense physiotherapy was the primary cause.
When the couple returned from China, they wrote about their experience on the Web. Word got around, and soon hundreds of people were calling them, Cherie says. A couple whose husband had a similar neurodegenerative disease even drove from Quebec to see them, and the man subsequently decided to make the stem cell trip. Another couple flew in from Taber, Alta., and decided to go to China after seeing the home videos of Haas’s progress. Those gains were partly due to the attitude of Chinese doctors, Cherie believes. They would tell Haas to push himself to his limit and even try to “retrain his brain,” she explains. “We saw miracles while we were over there. We put the word out because I know this works.”
Even if patients experience gains, it’s important to determine whether they are from the treatment, the exercise program or a more positive frame of mind. Any advances could be merely the placebo effect, as people often feel better after being treated, even if the procedure hasn’t worked and the gains won’t last, explains John Steeves, a professor at the college for interdisciplinary studies at the University of British Columbia who specializes in spinal cord injuries. Finding out whether any treatment really works requires clinical trials, and although Dr. Huang has published the results of his trials in Chinese medical journals, this data does not conform to international standards of medical analysis. Indeed, Steeves believes Huang deliberately flouts these standards to help his bottom line. “Dr. Huang has no interest doing a valid clinical trial because if it doesn’t give him good results, his income would dry up immediately,” he says from his Vancouver office.
Patients, like Haas, who seem to have been helped by stem cell treatments, are often eager to share their stories. They may become advocates for the Chinese medical centres; Haas’s story is publicized on the website of the company that organized his medical tourism trip. By contrast, it’s more difficult to find people who haven’t gotten better, or are worse after spending $30,000 on an experimental procedure. This might be because they feel duped, or because the Chinese stem cell treatment emphasizes empowerment—a “you can do it attitude.” Those who can’t “do it,” who go through the rigorous training program and end up no better off, may feel unlucky, cheated, or they may take the lack of success personally and feel that they have somehow failed.
Missouri resident Jeff Carneal, 38, doesn’t feel like a failure, but having spent so much money, he is frustrated and disappointed. He lost the use of his legs when he fell off a stepladder while fixing his father’s barn. He has spent the past six years working with different doctors trying to learn to walk again, even flying to Quito, Ecuador, for an experimental operation (nerves were removed from his legs and grafted onto his spinal cord, which cost a lot, but didn’t really help). When a Maclean’s reporter first met Carneal at the Beijing Xishan Hospital after stem cell treatment, he was enthusiastic and believed the operation he’d had a couple of weeks earlier had alleviated some of the shearing leg pain he’d felt ever since his accident. But when contacted a few weeks after he returned to the United States, he was more downbeat, and said the operation hadn’t really made any difference.
Negative outcomes aren’t widely reported, but they are more common than the Chinese hospitals would have you think, says James Guest, a professor of neurological surgery at the University of Miami. He visited Huang in Beijing in the summer of 2004 to sample and test the fluid being injected into foreign patients. The results were inconclusive, he says. Following this, he went a step further, and examined spinal cord injury patients pre- and post-treatment in China. The results, published in 2006 in the journal Neurorehabilitation and Neural Repair, make clear the difference between what the doctors see and what patients want to believe. Of the seven, six thought they recovered some limb movement, although in most cases the physicians measured very little difference.
A few had concrete gains: a 19-year-old had chronic, burning back pain that eased enough for the patient to stop taking painkillers. Another patient had fewer muscle spasms after the procedure and could angle his left hand a little more, although he phoned Guest six months later to say the surgery had not made any permanent difference. On the downside, there were also post-treatment complications: a 22-year-old contracted meningitis, pneumonia and gastrointestinal bleeding, which were managed with heavy medications, and another had a fever and confusion along with a drug rash. Guest is critical of the Chinese stem cell treatments: he believes some doctors are “motivated by profits” and “they place patients at risk for therapies which have minimal effect.”
Eight months after travelling to China, Haas was struggling with the symptoms of Machado-Joseph disease. He was having problems walking and was falling again. The family still had some money left over from their fundraisers, so they decided to make another trip to China, and took out a small loan. In March 2008, he and his wife went to China, this time to Qingdao in eastern China—the first hospital wouldn’t accept them since it was now prioritizing Chinese nationals over foreigners, explains Cherie. After four weeks of treatment, Haas had more energy and there were slight improvements in his balance and speech, he says. However, the gains lasted all of two months and today he’s just as bad as before the first trip. Nevertheless, despite the costs, and the dubious rates of success, the family would like to return again if they could afford it. “I would go tomorrow if we could,” Cherie says. “It gave people hope.”
Subscribe to:
Posts (Atom)