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Dear Ms Gordon and MUMS Readers,

Thank you for allowing me to respond to questions on Hyperbaric Oxygen Therapy (HBOT) posed by members of the network. Hopefully this quarterly column will be helpful and serve the needs of interested parents and professionals.

My experience with HBOT and brain injury dates to April of 1990 when I was requested to help a commercial diver demented after brain decompression sickness, "the bends of the brain". Seven months after his accident and five months after clinical plateau from standard United States Navy treatment, he threatened homicide to the diving company management. After a fateful, life-changing phone call to Dr. Neubauer in south Florida, myself and Dr. Van Meter embarked on a prolonged (initially 40, that soon became 80) HBOT course with SPECT brain blood flow imaging. The diver improved neurologically, cognitively, psycho metrically, and on SPECT brain imaging. This experience spawned treatment of additional divers and a formal program under the auspices of the Jo Ellen Smith Memorial Hospital Human Institutional Review Board and BRI. This program dovetailed nicely with a funded pilot project of HBOT in brain damaged boxers already under way by Dr. Van Meter and the director of research of the BRI, Dr. Sheldon Gottlieb. Since that time, I have treated nearly 150 patients with over twenty different neurological diagnoses, amassing a clinical experience in the United States second only to Dr. Neubauer. Many of these patients have been reported at a variety of scientific meetings (abstracts available on request).

The third patient referred was a 4 year old boy with hypotonic cerebral palsy in 1992 who within four months of treatment gained the ability to walk. He was reported and his video show in the winter of 1997 at the Buenos Aires, Argentina Conference on HBOT. I have treated or have under treatment over 25 children with a variety of congenital conditions, but mostly cerebral palsy. The improvement rate is over 80%, with a range of effects from modest to substantial in one or more of seven functions: awareness, spasticity or hypotonia, motor balance & gait, communication & cognition, coordination, and brain stem function, particularly swallowing. The program continues with emphases on children, but open to all brain injured patients. The net conclusion is that low pressure HBOT is a non-specific treatment for injured brain.

We have duplicated this effect in a preliminary animal experiment reported in 1995 in traumatized rats, and then the controlled clinical trial in Galveston, TX that I initiated and directed in 1997. The Galveston work continues with Drs. Barrett and Masel in stroke patients and acute pediatric head injured patients. Lastly, please remember the definition of Hyperbaric Oxygen Therapy before we begin. HBOT is the use of high pressure oxygen as a drug to treat basic pathophysiologic processes and hence diseases. This is the key to understanding any HBOT effect and indication. Now to the specific questions:

1. What is the best HBOT protocol and what should be done after the initial 40 treatments?

Answer: No one knows for sure, but in Dr. Neubauer's 26 years of experience and my 9, forty treatments seems to be the best start. Permanence to most of the effect occurs around 30 to 35 treatments at 1.5 ATA. These 40 can be delivered once or twice a day, maximum 5 days per week. When we first started, treatment was once a day, 6 days a week. With time and closing of the facility on Saturdays, this evolved to be a twice-a-day, 5 days per week on a two times per day schedule. We take a four-hour break between treatments out of habit and convention with standard HBOT wound treatment, but others have had success with only one to two hour breaks. Beyond forty treatments, the protocol is more variable, depending on the initial dose of HBOT in the first 40. If HBOT was given only once a day, five days per week in the first 40, you may be able to continue on that schedule without break to 60, 80, or more treatments without a problem. However, I have found that a four-week break at forty treatments works well to give any effect too much oxygen or physical fatigue time to wear off. The second 40 treatments evolved when our first 18-20 chronic brain injured patients all experienced some degree of improvement by 40 and elected to have more. In the children with CP, there seems to be some additional improvement and often those with minimal or no improvement in the first 40 show an improvement in the next 40. This is where our first child with hypotonia began to walk. The overall effect of HBOT in chronic brain injury is one of HBOT and time; the relative contributions of each have not been sorted out. Beyond 80 treatments the protocol is more empirical, like any drug, and dosing is dictated by response. My habit has been 5 to 15 treatment blocks every four to eight weeks, but this is by no means fixed in stone. Above all, remember that each brain injury is idiosyncratic, HBOT is a drug, and ultimately the drug dosage must be individualized.

2. How does HBO affect Seizures?

High pressure oxygen lowers the seizure threshold and this effect is proportional to the pressure, duration of oxygen exposure, and frequency of exposure. Seizure foci in the brain between seizures appear on functional brain scans (PET and SPECT) often as areas of decreased metabolism and flow, i.e. irritable hypoxic foci similar possibly to the foci of ischemic heart muscle that cause runaway electrical rhythms, "seizures" in the heart. It has been my contention for years, after seeing similar low-flow injured brain areas in trauma, stroke, etc. fill in on SPECT imaging after on HBOT, that seizure foci should be amenable to HBOT. In fact, we acquired this experience with a near-drowning or child with cerebral palsy. A case from California in 1996 and the Chinese abstract on epilepsy printed in the MUMS newsletter further support this experience. The problem is that this is tricky. Brain blood flow undergoes a transition during repetitive HBOT for chronic brain injury that spans the period up to approximately 30 - 35 treatments. During this time there are daily, hourly, even instantaneous changes in brain blood flow that in case of patients with seizure disorders can manifest themselves as an increase in seizure frequency or change in the character of the seizures. The peak for this is approximately 20 treatments, exactly where Mrs. Kimber's (MUMS Newsletter #77 page 9) child discontinued HBOT. Getting beyond this transition can be dicey and nerve-wracking in these children. I have some experience with this, the most illustrative of which was a 4-year old boy with ten petit mal seizures per day two years after near-drowning. On my initial evaluation he had 3 petit mal seizures in chamber. as his HBOT proceeded at another facility, he developed 40 petit mals per day plus one grand mal in chamber at 20 treatments. The pediatric neurologist sedated the child with Tranxene and the mother continued the therapy. Mom then surreptitiously discontinued the Tranxene because she was unable to follow the child's neurological progress. Eventually his seizure frequency decreased to approximately 5 petit mal seizures per day. I have experienced the same phenomenon with behavioral and emotional problems in other patients, the most dramatic of which was the 15-1/2 year old daughter of one of my hyperbaric oxygen technicians. In this patient we proceeded through a somewhat emotionally tumultuous two-week period until all of her pre-HBOT and HBOT exaggerated emotional behavior mellowed out. The usual pattern has been one of improvement with another 7 to 10 HBOT's until the transition period is forded. Another consideration in Mrs. Kimber's son would be the length of each treatment, the frequency of the treatments, and the time between treatments, all of which can affect the seizure frequency. Above all, each case must be considered and treated individually.

3. Should I try different alternative therapies such as Craniosacral or Amino Acids along with HBO?

Ideally, one day we will be able to combine multiple modalities simultaneously to maximally stimulate the injured brain. Until that time, however, a treatment modality should be performed individually or no one, Mom or Doctor, will be able to evaluate the efficacy of any individual modality. This is particularly important when the modalities are expensive. If HBOT works on a given child, major decisions need to be made regarding finances, resources, availability, family stability, etc., in the pursuit of additional HBOT. Simultaneous administration of HBOT, hormones, amino acids, etc. should not occur until one has demonstrated whether each works individually on your child. Institute one therapy at a time and when the therapeutic effect plateaus repeat the sequence with the next therapy in substitution or combination.

4.Can HBOT cause gassiness?

Again, in response to Mrs. Kimber's letter (featured in MUMS newsletter #77 page 9). There can be a couple of processes at work to explain the phenomenon Mrs. Kimber describes. If children or adults have an injury to the autonomic nervous system (in the brain) that affects bowel motility through an effect on the vagus nerve such that they have constipation and infrequent bowel movements, as they begin Hyperbaric Oxygen Therapy they can have a change in this autonomic nervous system that can manifest itself as a change in gastrointestinal motility. This has happened in a few patients of mine over the years with traumatic brain injury, stroke, near-drowning, and cerebral palsy. Secondly, the gut has gas within it and when you are compressed in a hyperbaric chamber you begin to exchange inert gas and methane in the intestines with oxygen. As this occurs, eventually the oxygen will be metabolized so you can decrease gas content in the gut. Simultaneously, during the compression phase of hyperbarics, the absolute volume of the gas will decrease in size. On ascent to surface, the oxygen, nitrogen, and methane in the intestines expands. The intestines are exquisitely sensitive to distension and stretch, such that the changes in intestinal luminal size can stimulate gut motility and hence bowel movements and gas. This can result in cramping. The best example of this is experienced on commercial airlines when cabin de pressurization takes place and you experience intestinal cramps and flatus.

5. Many physicians want to treat our children but have a fear of discovery/reprisal for HBO treatment of conditions outside the accepted thirteen UHMS indications. Whay can be done about this?

This absolutely must stop. Empiric use of any drug (HBOT) or therapy for "off-label" indications, especially when the first rule of medicine, primum non nocere --"do no harm", is satisfied, has been the foundation of the science and are of the practice of medicine since Hippocrates. The witch-hunt and policing of the many by the sanctimonious few must not be tolerated. In few other areas of medicine has this occurred with such ferocity and vigor as in the HBOT community. I encourage mothers to express their opinions to the president of the UHMS, Dr. Carolyn Fife, on this subject matter so that no further illegitimate prosecution of UHMS doctors occurs. The hypocrisy of the matter is that the off-label use of HBOT, (like any drug) in the practice of medicine, has occurred throughout the history of HBOT, medicine, and the UHMS, has been the source of nearly all pilot data that spawned the 13 UHMS indications, and is the basis for the establishment of the latest indication, brain abscess. The brain abscess indication was based on twenty cases, fourteen from Germany and six in the United States. The problem is that the rules have been applied unevenly to different doctors and different conditions, based on politics and personal prejudices. Please let me know where you are obtaining HBOT for your child, as I would like to catalogue this widespread practice of clinical medicine. I promise that I will protect the confidentiality of your doctor. Hopefully, Dr. Fife's Ethics Committee will manage to negotiate a method to allow this to proceed and simultaneously allow the collection of vital data that will fast-forward the approval process for HBOT in cerebral palsy. The Committee's decision is due in June, 1999.

This was not meant to be this long but as an inaugural communication of these matters it was necessary. Please have your doctors document your child's failure or success with HBOT, using as many outcome measures as possible, including video, independent neurological exams, functional exams, and functional brain blood flow imaging.

Sincerely,

Paul G. Harch. M.D.

Clinical Instructor,

LSU School of Medicine, New Orleans, LA



MUMS: National Parent to Parent Network
Julie J. Gordon
150 Custer Court
Green Bay, Wisconsin 54301-1243
1-877-336-5333 (Parents only please)
920-336-5333
1-920-339-0995 (fax)
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Last updated May 20, 2003 mums@netnet.net