Oxygen treatment seems to be helping North Aurora twins

This four-part series follows the Luke and Zach Branson, twins from North Aurora, through their daily life dealing with the effects of cerebral palsy and the myriad, often experimental, treatments and surgeries they've undergone.

Part II

No more seizures.

Only one trip to the emergency room all year.

Zachary's asthma disappears.

Luke and Zachary Branson, 8-year-old fraternal twins from North Aurora, have severe spastic cerebral palsy.

They undergo hours of different therapies, have had multiple surgeries and take several medications to make their lives more comfortable.

For Luke and Zach, the procedure which has led to the most mental and physical advancement, their parents say, is hyperbaric oxygen therapy, also known as HBOT.

Hyperbaric oxygen therapy is best known for treating scuba divers who suffer from decompression sickness, also known as "the bends," after resurfacing too quickly.

While researching cerebral palsy, the twins' mother, Kerri, discovered the treatment on the Internet when the boys were infants.

At first she didn't believe the claims about HBOT - the rapid physical and/or mental gains over a short period of time - progress often never achieved using standard therapies.

HBOT kept popping up in her studies on cerebral palsy. She decided there must be something to it and started contacting doctors, as well as families, involved with HBOT.

After a whirlwind of research, the price tag for the first round of treatments stopped her in her tracks. At the time treatments were $180 each and boys 40 treatments were recommended to start, so HBOT was crossed off the list of options.

Or so she thought.

A close friend gave $10,000 to the Bransons, generosity which would prove to make the twins' break-through possible, the family said.

Many uses; few approved

There are more than 50 applications where the hyperbaric treatment has benefits, such as stroke, multiple sclerosis and Crohn's disease, according to the Hyperbaric Healing Institute, located in Kansas City, Mo.

But most United States hospitals will treat only 13 of those 66 applications, because those are the only ones that will be reimbursed by federally funded programs like Medicare. The other uses are considered off label.

Because of this, many insurance companies don't initially cover the therapy, leaving patients or their parents to pay the costs out-of-pocket.

But that doesn't mean they can't be convinced.

After a year of treatments, and knowing many more would be needed to continue improvements with the twins, Kerri sent a 24-page letter to her insurance company documenting why she felt HBOT was more effective and less costly than all the other medication the twins were on.

The company promptly approved coverage of hyperbaric treatment.

Winter in Florida

Each winter, the whole family heads to neurologist Dr. David Perlmutter's Hyperbaric Center in Naples, Fla., for Luke and Zach's treatments. The twins started HBOT in 2001 and have had over 200 treatments to date.

In 2004, a hyperbarics clinic also opened in Bolingbrook, which they use in the spring and fall.

Yet Florida is their destination of choice because it allows the family to focus on the therapy in addition to giving them a break from their hectic routines at home.

The twins' flights are covered by Miracle Flights, and they stay at a family friend's house so their only costs are additional plane tickets and food. They even invested in a second minivan to keep in Naples to avoid car rental costs.

What involved

The procedure involves a person going into a sealed chamber and breathing in 100 percent pressurized oxygen at two to three times the normal atmosphere.

This pressurized oxygen drives 10 to 15 times more oxygen into the bloodstream, said Dr. Kenneth P. Stoller of the Hyperbaric Medical Center of New Mexico.

Red blood cells carry oxygen to tissue cells, but are limited in how much oxygen they can deliver. By breathing in air under increased atmospheric pressure though, extra oxygen can be dissolved into the bloodstream and flows quickly and in high concentrations to injured areas.

This in turn stimulates new blood vessels to grow and increases the activity of previously "idling" cells, including brain neurons, Perlmutter said.

Physical and occupational, focus on treating the physical impairments coupled with some specifics designed to enhance communication skills and academic performance, Perlmutter said. For example, hippotherapy - therapy sessions with the aid of a horse - helps the twins with their posture, muscle strength and balance. HBOT, Perlmutter said, treats the underlying problem of cerebral palsy - the damaged brain.

The end result shows gains in cognitive and physical capabilities, he said.

Because all patients and their disorders are different, results are, too, doctors said. For instance, the treatment may show rapid improvements over a short period of time in one patient, while another might have minimal or no improvement.

Some improvements also may be temporary. For example, the Branson twins have been able to sleep through the night for about six weeks after treatments.

After those restful weeks their routine of waking several times during the night resumes.

Inside 'the tank'

It is August 2003 and the twins are in the midst of a 2 1/2-week treatment session at the Perlmutter Center.

Scott and Kerri Branson bring Luke and Zach, who are perched in a double-wide stroller, into a small waiting area.

To the left stand four space-age-looking HBOT chambers, bathed in dim but warm light. Made of blue-green steel with an acrylic window, the 9-foot long chambers emit a continuous hum while in use.

The atmosphere in the room, while clinical is alos relaxing due to soft lighting.

Dressed in scrubs, Stephanie McDonald, a licensed practical nurse and certified hyperbaric technician, and fellow technician Joe Miller, greet the family with wide smiles as they walk in the door.

Stephanie and Joe know the boys well, since they see the pair each time the family goes to Florida.

Because the twins are going into a 100 percent pressurized oxygen atmosphere, which is highly combustible, certain safety precautions must be taken. Static electricity is the main concern, so whoever is going into the chamber can wear clothing made only of 100 percent cotton. Fabrics like rayon are more prone to produce static. As a double precaution, patients wear an anti-static bracelet.

Those entering the chamber cannot wear jewelry and are not allowed to wear makeup or fragrances, as the odors can taint the air.

After Kerri, Scott and the boys are changed into cotton garments, they sit upon gleaming metal gurneys covered with cotton sheets while the technicians take their vital information, such as blood pressure and their temperature.

Kerri and Scott each lie down with either Luke or Zach, ready to go into the chamber, or as they call it, "the tank."

Their gurneys are wheeled and locked into place situated directly in front of an open chamber door.

"All right guys, you ready?" Joe asks Scott and Luke.

"Good to go," replies Scott.

"OK, he-e-e-e-r-r-e we go," and Joe slides the stretcher part of the gurney into the chamber and places pillows and cushions along the inside walls. The door is closed and sealed, steel pins locking in place.

Compression and decompression each average approximately seven minutes, the pressure building and declining slowly until the proper level is reached for the actual 45-minute, twice-daily treatment.

While the compression starts, their ears feel pressure, similar to going up in an airplane or elevator. To relieve this pressure, Kerri and Scott have the boys swallow sips of water from a straw.

To pass the time, the family watches their choice of cartoons from a TV mounted above the chamber.

Scott will lie with a twin watching "Dora the Explorer" or "Blue's Clues." At the same time, Kerri will put the other son through some exercises. She'll sit him up, balances him on her knees, get him moving by extending his arms and legs, and having him practice lifting his head.

Since Kerri and Scott do not have any major ailments, the treatments have little effect on them other than making their hair and nails grow more quickly or helping rashes heal faster, Kerri said.

But the oxygen is dehydrating, the Bransons take water in with them. The only side effects are fatigue, nausea if they haven't eaten, or just a bad taste in their mouth.

Patients must wait a minimum of four hours in between treatments to avoid oxygen toxicity, which affects the central nervous system. Too much concentrated oxygen in too short a time can cause parts of the body to react negatively - with anything from ringing in the ears and dizziness to seizures.

In downtime between treatments, it's back to the condo for lunch and a quick swim if weather permits. Then at 3 p.m., it's time to go back to the center for the second treatment of the day.

After that, it's back home for dinner, relaxation and time for bed - the routine every day for five days during their 2 1/2-week stay. The family takes a break on the weekends, going to the beach or visiting tourist attractions. It's also time to catch up on things like laundry.

"We try to do something fun one of the days, mostly just go to the beach," Scott said.

What it has done

Doctors aren't sure how HBOT works, only that it seems to help many people with cerebral palsy.

For Luke and Zach, cognitive and physical gains, such as reaching and walking, will not regress or disappear, says Kerri. Once the connection is made, it stays.

Physically, the treatments temporarily reduce the spasticity in the boys' muscles and also help them sleep throughout the night, Kerri said.

But the relief is not permanent. The twins' muscle stiffness and restless nights will return in less than two months.

During their August 2003 trip to Florida, a new achievement was reached.

The boys both were able eat half a grilled cheese sandwich and ice cream by mouth, which is the most solid food they ever had, Kerri said.

The bonus - it happened on Scott's birthday.

Kerri and Scott said they see improvements every time they take the boys for treatments.

"It's amazing: we can almost count on it. The other gains we have seen but can't count on are motor skills," said Kerri.

Tthere are times the twins will say words clearly inside the chamber while getting treatment that they never say outside it, she said.

Before the last treatment of the 2003 trip, hyperbaric technician Stephanie McDonald walked in and said, "Hi Luke. Hi Zach. What's goin' on boys?" Zach immediately responded "Hhhiii," and awed everyone in the room Kerri recounted.

Results mixed

Dr. Paul Harch of the Baromedical Research Institute and Louisiana State University School of Medicine in New Orleans has studied the effects of HBOT on children with cerebral palsy and adults with brain injuries for the past 15 years.

His research shows some clients have tremendous gains immediately after the first treatment, whereas others take a little longer to see results - sometimes taking up to a month afterward.

"The light bulb comes on, or it's brighter," Harch said. He confidently says that this is a treatment for brain injury.

Doctors agree that there is also a limit to how many times a person can benefit from HBOT. When individuals start to show regression from previous treatment gains and other health issues, they have reached and gone beyond their peak and will no longer benefit.

Dr. Mary Keen, who has specialized in pediatric physical medication and rehabilitation at Marianjoy Rehabilitation Hospital in Wheaton for 14 years, was introduced to the possibilities of hyperbaric chambers about seven years ago. Seeing some severely affected cerebral palsy clients who had undergone HBOT, she was intrigued with their prognoses.

Keen says the patients most severely affected by cerebral palsy benefited the least from the conventional treatments available today.

"The stuff I do has some benefit, but (it) doesn't cure that form of CP," she said. "We need to look at alternative treatments like HBOT."

Although Keen has a positive outlook on gains that can be achieved with hyperbaric cchambers in cerebral palsy cases, she also has to look at them objectively due to inconclusive studies.

"The difficulty is, I have seen kids get better without HBOT as well. ... (I) need to keep that kind of information in mind as well."

Still, without solid data on exactly how it works, some doctors remain skeptical.

"I have been very impressed in studies that have been done, but it has not been proven beyond a doubt," Keen said. "I believe HBOT can probably help some kids, but there has to be an analysis to see how much and who will benefit - and clarify who HBOT will help."

Part of the reason with HBOT hasn't gotten wider recognition as a treatment for brain injury is because there's no "right" or set prescription with each case being different, Harch said.

"Because it is not an exact science in regards to working the same exact way in every person and, no one has been able to explain the science behind it," Harch said.

Keen is working on an estimated two-year clinical study at the Midwest Hyperbaric Institute in Bolingbrook to provide a study that offers a medical explanation of how HBOT actually works to help individuals with brain damage. She hopes to clarify several of the questions about the relationship between hyperbaric chambers and cerebral palsy.

Keen says if her research documents positive changes to be effective and that cannot be otherwise explained, she would expect HBOT to be an accepted treatment at Marianjoy as well as other such treatment centers.

Heading home

Although the HBOT treatments help the twins make gains, there are some things it just cannot help.

The treatment temporarily reduces spasticity in their legs, but they cannot fully extend them or walk with them in their current condition.

Having taken a year to come to the decision, Kerri and Scott scheduled surgery for both boys - on both twins' legs, and on Luke's hip - in hopes the boys might walk in the future.

Expecting setbacks from surgery, the family's trip to Florida in August 2003 was planned to coincide with the operations.

The Bransons hoped that the latest HBOT treatments will lessen any setbacks. Just a day after arriving home from HBOT treatments in Florida, the family stepped into Advocate Lutheran General Hospital in Park Ridge to face the next stage in their lives.