My daughter Elisa: how Hyperbaric Oxygen Therapy helped change my daughter's life.
Elisa was diagnosed with cerebral palsy (CP) about six months after the diagnosis of PVL. We did everything as soon as we found out. We did physical therapy five days a week and occupational therapy five days a week. The improvements were small and I was getting more desperate. I was told that if she sat unsupported by the age of three, then she would probably at some point walk. I increased her therapy to get to that point. A distant relative told my mother of hyperbaric oxygen therapy (HBOT). I am a pediatrician who worked in a pediatric emergency room. I knew about HBOT for carbon monoxide poisoning, for wounds and severe burns etc. But as a physician, I thought the very idea of using it for CP was absurd. I continued with increased OT, PT and SLP Therapy with the same minimal results.
My mother would constantly badger me to try HBOT, and I finally gave in, December of 1999. Elisa was then three-and-a-half years old, she could not sit unsupported, said maybe 30 words comprehensible to only me, my mother and her father. She could commando-crawl, not bear weight and screamed hysterically when she needed anything.
During first two weeks of HBOT, things started to change. Elisa seemed to be more aware of things. We had lived in the house we were in since she was born but she was looking at it as if it was the first time she had seen it. Then something else happened. She began to make sounds, an initial effort at speech. Not all at once but she would mumble sounds for hours then add to them and suddenly she began to form words. At this point I was so convinced that I did 120 HBOT treatments between December of 1999 and June 2000. During that summer she had developed more than 1000 words and was actually making three-word sentences. She became completely toilet trained and, for the very first time since she was born, I felt that I had a daughter!
As a doctor and a mother, I was greatly criticized by my colleagues. I heard it all: HBOT is snake oil; a therapy looking for a disease. There are no randomized, doubled blinded, placebo controlled clinical trials to establish efficacy and safety; nothing which the scientific medical community could accept as worthy of acknowledging it as a therapy. I was reminded, time after time, that physicians are scientists! (My personal favorite). But the fact is that Medicine is not an exact science. Physicians do not do everything in accordance with double-blind studies. Medicine is both an art and a science. We look at things that are proven but then we also take some calculated risks. As an example, I have never once seen a randomized, double-blind placebo controlled study to demonstrate scientifically that physical therapy works. Yet, physical therapy has been used for centuries with extremely positive results. We used aspirin for decades without knowing the mechanism of action and stopped using it without really knowing if it had a cause and effect with a serious illness. Even vaccines administered the way we have been giving four in one day has not been proven effective--and yet we do it.
My response to my colleagues was always the same: I don't have 15 years until we can assemble the millions of dollars and the organizational and research manpower to do a double-blind study. I am not even sure such a study can be properly established. I would rather treat my daughter now and find out that I wasted my money, than say I should have done it 15 years ago. I carefully considered all the possible side-effects of HBOT and saw that at the pressures we were using, the potential for adverse side-effects were negligible. Fifteen years later, almost to the month, I found out that a new study was going to be published by the Undersea and Hyperbaric Medical Society (UHMS) to show that HBOT works! All I can say is, thank God I decided to go with my own non-scientific maternal judgement and not wait. My daughter Elisa clearly has difficulty with mobility but she is extremely alert, speaks and communicates very well and is a complete joy to be around. None of this would be possible without HBOT!
As I read the new study published in the UHMS along with the comments of the physicians taking part in it, the only thing I could say was that 15 years ago, we were actually commenting on the same thing. Dr. JP Collet who conducted the study in Canada which used a control group which was NOT a control group was spoken to by many people who were interested in the outcome of the study. We knew at that time that 1.3 ATA on room air is NOT a control group. We have also never claimed that HBOT should be carried out without intensive physical therapy. While reading Dr. Arun Mukherjee's results, all I could say is it is brilliantly done--and Bravo!
Hyperbaric oxygen therapy is used by mainstream medicine for smoke inhalation, non-healing wounds, severe burns and other serious conditions. The pressure used is usually 2.4 ATA, which has potential negative side effects. The use of HBOT at 1.3 to 1.5 has minimal to no side effects. The charts which are published by the U.S. Navy on decompression claim that at 1.5 ATA we can stay for hours without any adverse effects. It was highly criticized by mainstream hyperbaricists that HBOT at 1.5 is not really a treatment. However, just because something is safe does not mean that it is not effective. We know that high altitude sickness can be ameliorated by the use of portable HBOT chambers which generally go to 1.3 ATA. In fact, both with AMS (acute mountain sickness) and HACE (high altitude cerebral edema) small increases of pressure can indeed reverse the life threatening process. The fact that hyperbarics at low pressure can be effective in treating and improving the quality of life of children with CP or TBI is amazing. I believe it is improving the quality of life--but we must constantly reiterate that it is not a miracle cure. I have never seen a child who was not walking and not talking become completely ambulatory and start talking in sentences after a series of treatments. We must be careful not to give false expectations to parents. We do not wave a wand and have all pathology removed. HBOT is another tool, and an effective one, in helping these individuals improve their mobility, their speech, their ability to be dressed to be toileted, their ability to communicate all of which are important improvements in quality of life. And this, by the way, must be an essential goal in any intervention when dealing with chronic life-long conditions such as CP.
There are similarities in the study which was published in the Lancet in which children were treated at different pressures and treatment effectiveness was then evaluated. The study which was carried out years ago showed that children improve even at 1.3 ATA. It was not the study that was wrong but the interpretation of the results. Dr Mukherjee took it one step further in that he admitted that there is no real control; he was able to use different pressures and he allowed more time for the evaluation of results. While some results can be seen immediately, such as state of awareness, it is absurd to think that neurons that were damaged, idling neurons, and stem cells that are mobilized and undergo neurogenesis, will give immediate results. We do not expect a child who has not ever walked to get up and walk after 40 sessions of physical therapy but we expect miracle cures from HBOT, then dismiss the treatment as ineffective when we do not get these desired results. This is simply ridiculous.
There are other issues to keep in mind. First of all, cerebral palsy is a condition (not a disease) which is caused by damage to central nerve tissue, by toxins, by lack of oxygen, by lack of nutrition. Working on the peripheral effect of this damage will never cure the problem. While we can stretch and enforce the muscles which are impacted, the signals coming from the brain are always the same. Perhaps, oxygen and pressure, working on the nervous tissue centrally can have lasting effects. Another point is that we have no other effective treatments for this condition. All we can offer is PT/OT/ST. ITB pumps can be effective and so can selective dorsal rhizotomy, but not with generalized hypetonicity. And in the case of SDR there is significant risk involved as this is a major surgical intervention. So, in the absence of effective cures/ treatments, I believe low pressure HBOT is an effective tool to be used in conjunction with standard intensive rehabilitation treatments.
I must make one last point which continues to be frustrating to me as a physician and as a mother. When the Lancet published the study in 2001, the results were reported on national television. The doctor who reported the study on MSNBC claimed that "the very expensive and timely treatment of hyperbaric oxygen is not effective. Therefore the only treatment for cerebral palsy remains drug treatments." I would like to know what he was referring to since, at the time, I had a daughter who needed help and maybe there was something I did not know about. When I called, he took my call but said he would call me right back. He never did. I wonder why the same station is not reporting these results.
So many more children could be helped and we are just not getting the information to their doctors or to their parents, and we desperately need to find a way to do this.^
Dr. Giuseppina Benincasa-Feingold's medical practice is based in Suffern, NY
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|Title Annotation:||THE ANNUAL HEALTHCARE ISSUE|
|Publication:||The Exceptional Parent|
|Date:||Aug 1, 2014|
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