Parent Chooses Hyperbaric Oxygen Treatment for Cerebral Palsy Daughter
By Lisa Viele
(Editor’s note: hyperbaric oxygen therapy is a controversial treatment for cerebral palsy. This is one family’s story about their decision to try it)
I was surprised to hear that he said, “I love you.” From just one round of treatments? His mom was beaming and could barely contain herself. “He can also sit up for 20 minutes all himself,” she said grinning. Now I was even more curious about Hyperbaric Oxygen Therapy treatments.
I just stood there. Speechless, in the church where we both take our children to the special needs ministry. It is the only church in our area that has it. Each child has a person just for them. My daughter, Lizzy, is a healthy and happy 11-year-old with CP and microcephaly. She has numerous disabilities and delays. She has never spoken a word. So when this mother said that her non-verbal son spoke those words, I will admit, I was jealous.
I want the best for my Lizzy. I didn’t expect to be here. By here, I mean a life with a child with so many disabilities. I never thought that I would be that statistic. Surprisingly, the numbers are not what I expected. Cerebral palsy affects about 1 in 278 children. That number is alarming. We are that 1 in 278.
Raising a child with CP, or any disability, is difficult. Throw in a couple more children, like we have, and parenthood can be downright impossible. Lizzy is spoon fed, in diapers, legally blind, has a seizure disorder, walks with assistance, and is non-verbal. My husband and I learned very early on that we must be as persistent as possible with everything pertaining to Lizzy. From medicines to school Independent Education Programs (IEPs), to current treatments that will benefit her. Hyperbaric oxygen therapy was “the current treatment” where we hope and pray our persistence will pay off.
What is Hyperbaric Oxygen Therapy (HBOT)? As it was explained to me, HBOT is a medical treatment that enhances the body’s natural healing process by breathing in 100% oxygen while in a total body chamber. Oxygen delivered this way dissolves more easily in the damaged parts of the brain. The Federal Drug Administration has approved HBOT to treat decompression sickness, gangrene, brain abscess, and injuries in which tissues are not getting enough oxygen. But it has not yet approved HBOT to treat cerebral palsy.
However, proponents of HBOT say it has been shown useful in treating oxygen starvation of the brain, known as hypoxia. Since full blood circulation to specific areas of the brain may be impaired, increasing the rate at which oxygen diffuses into all of the body’s fluids increases the amount of oxygen carried to the hypoxic brain tissues. Saturating cerebrospinal fluid with oxygen holds the promise of repairing any recoverable brain tissue that is intact but not functioning normally.
The use of oxygen treatment in a chamber dates back to 1662, when an Englishman named Henshaw created the first chamber. Each hyperbaric oxygen treatment is called a “dive.” HBO treatments usually last from 60 to 90 minutes. Some children may have more than one session in a day. The total number of sessions will vary, but it’s common for treatment to start at 40 over the course of several weeks.
There have been many studies on HBOT and I was please to find that there are no known side effects other than ear discomfort from the rising pressure in the chamber during treatment.
Hyperbaric oxygen therapy improves the quality of life of the patient in many areas when standard medicine is not working, according to this 2007 study in the Journal of Physicians and Surgeons. Conditions such as head injuries and chronic fatigue have responded favorably to HBOT. In studies, as documented in The Lancet Journal, increased oxygen intake and tissue saturation has shown promising results for children with brain injuries:
- Improved breathing
- New blood vessel growth
- Decreased swelling and inflammation
- Deactivation of toxins
- Strengthened immune system
In January 2011, the Agency for Healthcare Research and Quality (AHRQ) released a review of HBOT studies that basically concluded that there needs to be more study done. At the same time, the review noted “Although none of the studies adequately measured caregiver burden, study participants often noted meaningful reductions in caregiver burden as an outcome of treatment.”
There are basically two types of chambers: monoplace and multiplace.
Monoplace chambers hold a single person and the whole chamber is pressurized with 100% oxygen. Multiplace chambers are designed to hold several people at one time and oxygen is delivered through a mask or a hood. During hyperbaric oxygen therapy the patient sits or lies within a monoplace (single person) or multiplace (multiple person) chamber, as the pressure is slowly increased to between 1.4 and 3 times normal atmospheric pressure, depending on the condition being treated. Oxygen is pumped into the chamber and accumulates at higher concentrations due to the increased pressure. Both the pressurization and increased concentrations allow the oxygen to dissolve more readily in the blood, lymphatic fluid, and the cerebrospinal fluid, which nourish the brain and spinal cord.
Fees for hyperbaric oxygen therapy can range from $150 to $1,000 or more per treatment, depending on the type of treatment center, physician consultation fees, and other factors. When I called around, I found that you could receive between 25-40 treatments in a “cycle.” A cycle can cost from $5,000.00-6,500.00.
Medicare, Medicaid, and private insurers generally reimburse for the treatment of Federal Drug Administration-cleared indications and occasionally reimburse for the treatment of off-label or alternative indications. HBOT is not considered an accepted treatment for CP, so it is off-label.Reimbursement rates and criteria may vary widely by insurance carrier and by state or region.
That said, however, an on-line organization called MUMS Parent-to-Parent Network has reported success at getting some states to reimburse for this therapy. The MUMS website contains information about language within Medicaid laws that will support this reimbursement. According to the site, the language is found within the Omnibus Budget Reconciliation Act of 1989 in the EPSDT statute. (EPSDT stands for Early, Periodic, Screening, Diagnostic, and Treatment services.) The most important part of this document states:
Other Necessary Health Care – States must provide other necessary health care, diagnosis services, treatment, and other measure described in section 1905(a) of the Act to correct or ameliorate defects, and physical and mental illnesses and conditions discovered by the screening services.
The group says this passage has been used to win HBOT reimbursement in Missouri, North Carolina, Virginia, and West Virginia. In addition, MUM said that “Once they’ve been reminded of Paragraph 5 of the EPSD…Arkansas, Arizona, California, Hawaii, Kansas, Maine, Maryland, Michigan, Minnesota, Nevada, New York, Wisconsin, and Wyoming have all indicated they could reimburse HBOT should a Medicaid recipient in their states request it.”
Finding a Clinic
When I started the initial process of finding clinics or hospitals that did this treatment, I used the Internet. I wrote down about seven places. Some were out of state, which meant that we would have a long car ride or a short flight. The places that were out of state were only one or two states away. However, Lizzy does not do very well on long car rides and we have yet to take her on a plane.
Another issue that we might encounter is that Lizzy might be claustrophobic. We have no idea of what this may mean for treatments until we get into the chamber. She also doesn’t like anything touching her head, so a hood or mask might be a problem. We may have to accept the fact, going into this, that she may not be able to handle the treatment.
Each place I called I asked the following questions:
- How long have you been doing these treatments?
- Do you treat children with CP?
- Is it safe?
- Are there any side effects?
- What type of chamber?
- Can I be in there with her?
- Can she listen to her music while she is in there?
- How long are the treatments?
- How many treatments are included?
- How many treatments in one day?
- Can we go home for the weekend then come back?
- How often can we come back for another round of treatments?
Our Journey Begins
I was told that she would need a prescription for her pediatrician stating that she could receive oxygen treatments. Our pediatrician is very understanding and encouraging when we request something for Lizzy. She said she was very interested and would do what she could for us.
Our funding will come from our daughter’s trust, which we received from a jury award after suing our doctor and hospital for medical error, which is a whole other story. At the time, we had no idea what we would be facing.
Lizzy will begin her treatments this summer. We are so excited about them and are optimistic that she will benefit from them. When I heard my friend at church describe her son’s improvements, I knew that this was what we had been waiting for. It was not what we had prayed for or dreamed of. It was the hope that we had wanted to feel again.
Other Resources for Information
There are numerous resources on the Internet for you to read about HBOT. There is also an interesting video that was recorded in 2004 after a young man named Curt Allen, Jr. was involved in a serious car accident that left him in a vegetative state confined to a wheelchair. This was the video that made us move forward with getting these treatments for our daughter.