Hyperbaric Oxygen Therapy

Hyperbaric oxygen therapy (HBOT)

I have to start by saying that I am not a medical person; however, becoming the parent of a special needs child feels like you’ve been thrown into the deep end of the medical, advocacy, and research pool. My hope is to give you enough information to do your own research and ask your own questions when speaking with medical professionals regarding hyperbaric oxygen treatments and, ultimately, advocate for the coverage of HBOT for your child.

Ryan’s Diagnosis

One month before Ryan’s due date I went into labor. Monitors showed that he was in distress so an emergency c-section was performed. After he was born, the doctors did an ultrasound to determine why he was sleeping so much. There they found that he had suffered a stroke.

The stroke led to cerebral palsy, Cortical Visual Impairment, hypotonia of the trunk, hypertonia of the limbs, seizure disorder, and developmental delays. Ryan has been in weekly occupational, physical, and speech therapy since he was approximately 6 months old.

We’ve had improvements that were limited by seizure complications, Depakote side-effects, illness, and hospital stays. However, none of our improvements have been greater than those gained during and after hyperbaric oxygen treatments.

Our Journey

When we first heard about HBOT, we were a little skeptical. We had already followed so many “remedies” down dead-end roads. But once we saw Curt Allen’s video on You Tube, we knew that we couldn’t just walk away from it.

You can see Curt Allen’s video at: http://www.youtube.com/watchv=nbFs9NN__Mk&feature=player_embedded

We opted to go see our son’s neurologist – now I know that all of the HBOT doctors would cringe at that but our neurologist withholds no good thing from our child and we trust him. He really is the best! While waiting we heard that he was busy so we were asked to meet with the physician’s assistant instead. She said, “We don’t recommend it because it has not been proven and we hate to see parents waste their money.” Once the neurologist came in, the PA repeated her recommendation and his neurologist asked what we thought. I told him that I thought we could get a grant or do fundraisers. He quickly said, “Go for it!” with no hesitation. I asked if he had any concerns about causing harm and he did not.

We are so thankful that he gave his blessing because the treatments have changed our lives. His first session was in July 2010 when he was 6 years old. One of our favorite changes was in Ryan’s happiness; around dive 20 his crying dropped to about 10% of what it had previously been. Mine did as well. His neurologist believes that this is most likely related to the neurons in his digestive track since it holds the second most neurons – second only to the brain. And, of course, neurons cannot function properly without an adequate supply of oxygen.

One of the first things we noticed was the ability to stretch his left wrist to a functional position. This was during his second day. With continued growth spurts, however, it can be difficult for us to protect his tendons and prevent contractures without HBOT.

The next thing we noticed was an improvement in his vision. He was far more visually attentive than we had ever seen him. He began refusing to wear his glasses. His optometrist said that it was because, with the improvements, the glasses were too strong.

Prior to HBOT Ryan’s swallow was audible, which made the therapists cringe due to the risk of aspiration. Since his treatments, we have only seen that swallow return occasionally for brief periods when he has a cold. This past January he said his first sentence. He said, “I love ou (you).” One day after a seizure in April, he napped and when he woke up I asked how he was and he quickly responded with, “Hungy (Hungry)…..egg…..oran duice (orange juice.)” Before his treatments he had never put words together. His communication had been limited to single words here and there such as egg, eat, go, hungy (hungry) and dink (drink).

In the 8 months prior to HBOT, Ryan was in the hospital every other month but has not had one hospital visit since returning home from his treatments. This has lead to reduced absences at school. And his teacher also feels that he is far more attentive than he was the previous year.

Prior to our first round of HBOT, Ryan could not sit up on his on for more than a minute or two. During HBOT, he began to sit up for more than twenty minutes and has never lost that ability. In fact, his physical therapist feels that his progress has never been faster than it has been since HBOT. In the script written by his neurologist for the second round of treatments, he noted that Ryan had made improvements not previously found in any other treatments.

Towards the last few days of his first HBOT session we had complications from a diet used to control his seizures. We, along with the doctor, determined that the diet was just too hard on him since we couldn’t get him to drink enough liquids. We took him off of the diet yet he remained seizure free for approximately 9 months. When daylight savings time changed in April, we found the strobe lights on the school buses began to trigger his seizures again. Even with keeping him away from flashing lights, we began to see occasional seizures. We opted to return to the diet until we could get him back in for another round of HBOT.

We started our second round of HBOT June 15, 2011 and, so far, he has completed 28 of those dives. We had begun to see some of the same complications from the diet and stopped the diet after dive 18. We did see another seizure after coming off of the diet but it was mild and we have opted to wait a little longer. As of dive 28 there have been no further seizures.

We also decided that since he was treated at 1.75 ATA last year and the seizures stopped that we would increase the pressure from 1.50 ATA back to the 1.75 ATA received last year. Interestingly enough, I had not been able to stretch his wrist this year the way that I had been able to last year. Once the pressure was increased, I was able to once again stretch his wrist back to a functional position.

More to come – I will update as we finish the second round and see continued improvements. One of the amazing things with HBOT is that the continued improvements don’t end with the last dive. We continued to see improvements through at least nine months.  See the page titled "Ryan's HBOT Journey" to see his progress in the months following the hyperbaric oxygen treatments.

Ryan completed his round of 40 dives on July 6, 2011. Our current plan is to do 10 dives a month beginning in September 2011, provided we do not go longer than 3 months without treatments.  Going longer than three months will result in another prolonged session.

Description of Treatments

Ryan’s rounds involve 2 “dives” a day until he completes all 40. They are called dives because each session simulates deep sea diving by increasing the pressure until you reached the desired treatment level. The treatment level is measured by atmosphere absolutes (ATA). The most common level of treatment seems to be 1.5 ATA.

Once the treatment pressure is reached, the chamber is filled with 100% oxygen. For Ryan, it takes about 10 minutes to reach the desired level (1.75 ATA), then one hour with the oxygen, and another 10 minutes to go back to normal pressure.

Our first round was in a multi-place chamber, which held five patients and five caregivers. The patients would put on clear hoods that delivered the oxygen once full pressure was reached.

This time we are in a mono-place chamber. The chamber is basically a bed inside a pressurized tube. The good news is that the caregiver gets the treatments as well. Most allow for the viewing of a TV/DVD. Our experience has been that computerized chambers are easier on your ears when descending and ascending. 

Portable chambers are also available for purchase; however, they can only reach 1.3 ATA and they compress room air rather than pure oxygen. You can also wear a mask that delivers 24% oxygen. Modified chambers can be dangerous so avoid the use of chambers that have been modified beyond what they were manufactured to do.

We prefer the hard chambers because the increased pressure is more effective (as we’ve seen in Ryan by simply going from 1.50 ATA to 1.75 ATA) and room air or even 24% oxygen does not have the same healing potential that 100% oxygen does.

Part of the debate or criticism of HBOT is related to the dosing recommendations, such as the frequency, duration, pressure and concentration of oxygen. Those decisions would be based on the patient’s age and diagnosis. There is also a concern of oxygen toxicity if the pressure, duration, frequency and/or concentration of oxygen are too high. So, more of a good thing is not always better.

http://www.hbot.com/blog/hbot-staff/hyperbaric-oxygen-theraphy-global-cerebral-ischemiaanoxia-and-coma/05/06/11

Insurance / FDA – Facts to Know When You Appeal a Denial

First of all…..appeal denials!!

An interesting fact, one of the reasons that insurance companies deny coverage of HBOT is because the FDA hasn’t approved it for the patient’s specific diagnosis. However, in the case of Cerebral Palsy, they do have several approved diagnoses that are similar to Cerebral Palsy: air embolism, carbon monoxide poisoning, brain decompression sickness, brain abscess, and cyanide poisoning. All of these diagnoses are considered hypoxic/ischemic conditions. In other words, they all involve injuries to the brain brought about by the loss of oxygen. Therefore, it stands to reason that HBOT would be effective for all brain injuries regardless of the specific cause of the injury.

In our case, it was helpful to complete the first round without coverage and then show the before and after evidence. It is hard to deny a reduction in healthcare costs of over $40,000 in 8 months. To date we have a “we’ll consider covering”; however, we do not know how much will be covered or for how long.

Here are some tips for writing your appeals letter:

1) Think about how the company will benefit from spending money on the treatments, such as what other medical treatments/services might be avoided or eliminated.

2) You want the help of the person reading the letter so be respectful so that they want to help your child.

3) Paint a picture of your child that forces them to see them as a person rather than a number.

4) If you’ve had previous HBOT, detail any past improvements noted during HBOT treatments and in the following six months.

Community

Our church, friends, and Wesley’s co-workers rallied around us to allow for our first and second round of hyperbaric oxygen treatments. You can see the local news story at:

http://www.wmbfnews.com/story/14069467/pass-the-cash-ryan-howell

Things to Help In Planning

HBOT helps to detoxify your body so to assist with this it is recommended that you take in plenty of antioxidants and water. We struggle with Ryan’s diet so he also takes vitamins A and E. Of course, you would need to speak with your doctor regarding supplements.

The time in the chamber, and approximately one hour after, are the best times to stretch and work your child. We’ve noticed the stretching is less bothersome to Ryan during those times as well. Having said that, you will feel far busier than you can begin imagine so don’t beat yourself up if that isn’t always possible.

Cod liver oil (gross I know) is excellent brain food. They do make a lemon flavor that Ryan actually likes. It can be found at your local vitamin store.

Questions to Ask When Seeking an HBOT Clinic:

1) What pressure will be used?
2) What type of chamber is used?
3) What is the percent of oxygen delivered during the treatment?
4) How old is the equipment and what was the date of the last maintenance?
5) Has it been modified?
6) What is the maintenance schedule for the chamber?
7) What type of training are the technicians required to complete?