Traveling hyperbaric chamber gives healing hope to area families
By Donna Lenz Wright/The Week
(Originally published July 13, 2003)
It looks like a big white submarine inside a normal, run-of-the-mill trailer. Knobs, buttons, measuring meters and pipes adorn the sides.
The first thing you notice, besides the strange sight of a submarine filled with cushions and pillows on the outskirts of Elkhorn, is the continuous humming of the equipment and the cool temperature inside of the trailer.
Five-year-old Elizabeth Kopp knows the routine well.
She is busy going about her business giving each person their respective hoods, helping to take off everyone's shoes and carrying pillows on board the sub, which is actually a portable hyperbaric oxygen chamber.
Her mother, Gail, has brought her here for a controversial oxygen treatment in hopes of diminishing the symptoms of Smith-Magenis Syndrome (SMS).
SMS is associated with a small, missing section of chromosome 17, leading to a pattern of physical, behavioral and develop-
mental features, according to the PRISMS Web site at www.smithmagenis.org.
On shelves in the trailer are movies that Elizabeth stops to check during her all-aboard routine. This takes a little time because there are lots of movies to choose from.
Hyperbaric oxygen therapy (HBOT) sounds a bit hi-tech, but it is actually a centuries-old medical treatment based on a simple premise: Flood the body with oxygen to stimulate its natural ability to heal.
The treatment involves not only breathing in 100 percent oxygen, but doing so in higher-than-normal atmospheric pressure, usually between nine to 45 feet below sea level. The normal air we breathe is 21 percent oxygen.
It is a widely accepted treatment by physicians for victims of burns, diabetes and tissue repair in cancer patients who've had radiation therapy. It is also widely used to help scuba divers get rid of "the bends," a condition caused by rising too quickly from deep waters.
What's not so widely accepted-on the medical front-is the value of HBOT in treating many other medical conditions such as cerebral palsy, migraines, stroke, Lyme disease and brain injury.
It takes time, lots of time, for the medical world to change a belief. Because of the empirical nature of medicine, doctors want scientific, repetitive evidence showing measurable results before they'll jump on board of any medical treatment. And most doctors say there simply isn't enough scientific evidence showing that HBOT can do these patients any good.
But people who have learned about HBOT are anxious and willing to try it for their conditions, especially because current theories predict that the sooner a person receives the treatment, the more benefit it will have.
By using the same premise of flooding the body with oxygen to stimulate its natural ability to heal, assertive patients and parents have strong-armed their way onto the HBOT landscape, despite the lack of support from the medical community.
Several Walworth County parents, like many across the world, have taken their knowledge about HBOT, researched the risks versus benefits, hired their own hyperbaric chamber owners and operators to travel to their area, and chosen to oversee the treatment themselves.
Vicki Barels of Elkhorn, whose daughter Brooke, 5, was diagnosed with cerebral palsy (CP), Beth Barton of Delavan, whose daughter Maggie, 3, was also diagnosed with CP, Gail Kopp of Genoa City, whose daughter Elizabeth, 5, was diagnosed with SMS, and Cassie Hartough of Delavan, whose son Ben, 4, has a seizure disorder are just a few self-educated parents in this area who have chosen HBOT to accompany their children's traditional medical care.
Barels, who also happens to be a circulation representative for The Week, connected with a parents' support group after Brooke's diagnosis, where she first heard of HBOT. The support group, MUMS: National Parent to Parent Network, is headquartered in Green Bay.
CP is generally defined as the result of brain damage occurring shortly before, during or after birth. "Cerebral palsy is such a difficult diagnosis," she said. "I can't tell you how many tests she went through to rule everything else out before they decided to call it CP. I think the biggest reason they have to name it is for insurance purposes."
CP is not alone in this ambiguous type of diagnosis process. Many of the conditions currently not approved by the Food and Drug Administration (FDA) for HBOT fall into this category including multiple sclerosis, autism and fibromyalgia.
Bringing together the logistics of getting this treatment for her daughter was no small feat, but Barels is obviously gifted in the area of organization and determination.
"The Newmans have been just wonderful," she said of Duane and Linda Newman who cleared one of their storage sheds to give the temporary home to the chamber that they needed. The Newmans own and operate Newman Storage as well as Elk Realty.
This detail is not to be understated. Every day around the world, families are living in hotel rooms for six to eight weeks at a time while their loved ones receive the treatments far from home.
"I just dove in and researched," said Barels. "It took us about two years to decide. I wanted to uncover every stone and make sure there were no harmful side effects. After that, we decided that this was just something we had to try.
"If there's something out there that might work, even if it's not guaranteed, as parents we want to do everything we can do."
An upsurge in traveling hyperbaric chamber owners and operators has emerged due to the sheer demand for the treatments. C. Michael Pugh of Normal, Okla., travels with his chamber in Wisconsin, Colorado and Oklahoma. His company, Hyperbaric Services, Inc., is one that has been providing HBOT for Walworth County families since last year. Barels found Pugh through the same support group where she first learned about HBOT.
"It took us awhile to find somewhere to get the treatment because it's not FDA approved," said Barton. "And we couldn't find any doctors who would give us the go-ahead to try it either."
"But if it were their children, they'd be here," added Barels with Barton and Kopp nodding their heads in instant agreement.
"We'd hate to be somewhere down the road and think that we didn't try everything that we could," Barton said. "The side effects are so minimal that we just had to try it."
Glowing testimonials and encouraging case studies definitely exist. But experts still say there isn't enough of the proof they're looking for. But don't tell these parents what "experts say," because they are planning on becoming the very people who will be able to give the empirical evidence the doctors are asking for.
"Brooke is approaching her 100th treatment, which studies show is the platform from which people should judge signs of improvement," said Barels.
"We saw improvements after the first 40 treatments. Her motor planning-getting places with her walker-is better, her attention span is better and she's just a lot more interested in things.
"And her overall mood is just happier. Her therapist noticed that too, and she didn't even know she was coming for treatments."
"Elizabeth's attention span increased and her speaking ability went from one or two words to where she can now sing a whole song," said Kopp. "Whether or not that's because of the chamber, I don't know. But when she was recently evaluated by the National Institutes of Health she made a 24-month gain in her fine motor skills in one year, which is something that's not frequently heard of."
"Ben was having up to 90 seizures a day and medication just wasn't controlling it," Hartough said. "After his first 40 treatments he was seizure-free and he's been seizure-free ever since."
The traveling chamber
Pugh, co-owner and operator of Hyperbaric Services, Inc. with his wife Kaye, has been providing patients with HBOT for two years. Before he was a certified chamber operator, he was a city planner in several states across the country.
He got involved in the "HBOT Movement" through his niece's daughter, Rachel Partobi, 11, who has CP. Pugh's sister had a stroke and is also receiving treatments in the chamber. So Pugh was a family member of a patient before he was a provider.
"Rhea (Pugh's niece) had researched hyperbarics when Rachel was 8," he said. "She started looking for a place where they could get the treatments, but all she could find at the time were places very far away. They were very expensive, plus you have to go live in a hotel or something. That's very difficult on a child for a couple of months at a time.
"She found a guy in Tulsa with a chamber and she kind of brow-beat him into doing it for her," he continued. "I went and saw the treatment and there were pretty rough circumstances. There was no air conditioning and it was the heat of the summer. The chamber generates a lot of heat, so the air conditioning unit is very important."
But before long, they were convinced that it was worth it. "We saw some great improvements in Rachel and I got excited about it and went to school down in Florida to learn how to operate the chamber. I came back home and found a chamber in Louisiana, put the air conditioning in the trailer and got it all set up."
He received his chamber operator certification with the International Board of Undersea Medicine while studying with Dick Rutkowski, associate member of the Undersea and Hyperbaric Medical Society, at Hyperbarics International in Florida.
"The treatment choices either involve long travel or dubious local treatments with no doctor involvement. We bridge the gap by bringing professional, affordable service to our clients."
Each treatment takes about an hour. Some people choose to do one treatment per day, some do two-depending on how long the chamber will be in their area and when it will return.
Dome hoods are worn with a latex seal around the neck to deliver the oxygen. One hose pumps in new air in, and another takes the old air out. Pugh has a television set up just outside a window in the chamber for the kids to watch movies through. Today's pick was Shrek.
The chamber that Pugh has holds up to eight people, which are usually taken by four patients and their caregivers.
After two years, Pugh has gotten to know the patients very well. "These kids are incredible, they're the greatest people I've ever met. I just love them to death," he said with his blue eyes showing his sincerity.
"The changes are subtle, but one of the big things that people notice is that the stiffness goes away," said Pugh. "My niece, for example, she's extremely involved. Since she began treatments, when you call her name she'll turn and look at you when she didn't before. And she'll watch television, and she didn't do that before. She's had about 135 treatments so far."
And after two years, Pugh has gotten to know the families very well. "These parents measure things differently than you and I do. Rachel's hands and arms were constricted under her chin, now they lie in her lap. That's huge when feeding yourself is a major goal. That's a big deal."
And after two years, Pugh has gotten to know the signs of improvement in those who receive the treatments. "You don't see a child that's not walking just get up and walk one day. If they've never had it, they have to learn to use it. People that have had a stroke or something similar, when they get it back, they know what to do with it. But like when these kids gain something, they need the time to be taught to use it too.
"It's a real worthwhile cause."
For more information contact Vicki Barels at (262) 642-4214 or visit the MUMS Web site at www.netnet.net/mums.
The author, a medical assistant at UW-Whitewater and a frequent contributor to The Week, lives in Whitewater.
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