Naomi's Back Story or What Happened to Naomi to Need HBOT.

Naomi was born 2 weeks after her due date. I had an emergency c-section because after almost a day of serious labor (we were doing a homebirth vbac), I felt something was terribly wrong. Thankfully, my midwife listened to me, and we went to the hospital for an emergency c-section. Naomi was born with her lungs stuck shut from mecomium (baby's first excrement) inhalation. It was the worst the doctor had ever seen. She was rushed to Children's Hospital in Seattle where she was put on ECMO (extra-corporeal membrane oxygenation).

ECMO is used in infants who are extremely ill due to breathing or heart problems. The ECMO machine circulates blood through an artificial lung back into the bloodstream. This provides adequate oxygen to the baby while allowing time for the lungs and heart to "rest" or heal.

Here is a picture of Naomi just after she was off of ECMO, she is still hooked up to a hard ventilator:

ECMO is a device of last resort for kids that are close to death. When Naomi was on ECMO 3 others were in NICU (neonatal intensive care unit) ECMO as well. Of those 4 kiddos, only Naomi came out alive. The down side to ECMO is that there is a large chance of have a stroke while on the machine, and most ECMO kids have asthma and allergies. Naomi had a stroke on Day 5 of ECMO. Thankfully the 5 days she had on the machine was enough to let her lungs absorb enough meconium to be able to breathe with a hard ventilator, eventually a soft-ventilator, and finally regular room air.

A regular down side to being a stroke victim (or traumatic brain injury of any kind) is an increased chance for seizures. To date, Naomi has only had one seizure, we think induced by a dark room coupled with a bright flashing anime cartoon. We are hoping that the repair of tissue in her brain from HBOT will lessen her future risk of seizures, as well as perhaps heal her asthma.

Here is Naomi the first day she got home from the hospital (at 2 months old):

Where are You Doing HBOT? Why Canada?

We are doing our care at HOC Hyperbaric Care Center in beautiful Victoria, B.C.

http://www.hyperbaric-care.com/hyperbaric_victoria.htm

Why Canada?

Well, we live in Western Washington and out of all of the array of options available, this option seems the most efficient and cost effective for our family. Also, we did not find out about Option 1, until we already had set the wheels in motion to do Canada. We may have chosen that first, but we also wanted to be under the care of someone who had experience, should Naomi experience side-effects.

What were your options?

1) Doing HBOT at home renting a machine.

Costs: $1495 to rent for a month

Plusses: What is more comfortable than at home? Makes an interesting conversation piece when stationed in the living room. Obviously the most economical choice.

Negatives: Soft-sided. Not sure if soft-sided is as efficacious.

http://www.hyperbaric4autism.com/

2) Doing HBOT at the ONE Naturopathic Clinic in the Seattle area that does HBOT.

Costs: $125/session, costs of 40 sessions ($125*40 =$5000), plus the cost of gas and the cost of time. A 1-1/2 hour session plus 2 hours of driving would seriously eat into our homeschooling time.

Plusses: Don't have to leave home for a month. The doctor seems VERY knowledgeable and nice. The atmosphere is nice too.

Negatives: From our house its a minimum of an hour each way through the worst traffic Seattle has to offer. There would be no way to do 2 treatments a day, and it would disrupt our life longer. Mom would be a basket case from driving through that traffic (mind you I am not afraid of traffic and drive to Seattle often--I once did therapy once/week for myself slightly closer to my house and quit because the traffic jambled my nerves so badly). Again, I am not a nervous person who is afraid to drive--this is a bad stretch.

Also, we have tried a type of hyperbaric chamber similar to this picture once before. I call it the "coffin" type. Naomi tried this last year. She refused to go in, unless I went in with her. As you can see from this picture, its not made for two people. Naomi and I were both very claustrophobic, and she flat out refused to go in again. Naomi is a fairly easy going child, so when she goes adamant, it usually means I should listen. (The coffin chamber we used wasn't clear all around, but looked more like a submarine with windows.

For people who live in S. Seattle, and wouldn't have far to travel, and may be adults without claustrophobic issues, I would recommend this avenue. Just Google "HBOT Seattle" and you will get to the actual website.

3) Go to Victoria, B.C. and use a hard-sided tank.

Costs: $85/treatment, exchange rate ~ .77CAD:$1US, 40 Treatment Cost: 40*85+.80 = $2720. Additional costs include traveling to and from Victoria with 4 people and a car via ferry: Round Trip = ~$170, plus gas. DH is coming up for only a short trip and then coming up to help us back, and Benj is going back for a weekend to attend a class. We need to add walk-on Clipper tickets $154 and gas from Seattle to Tswassen and Schwartz Bay to Victoria and back about 1-1/2 tanks of gas in the minivan so at today gas prices ($2.08/gallon) that is about $55. Total for Canada not including living expenses: $3100

Plusses: We get to stay with our friend, Kathleen, in a wonderful guest room in a wonderful part of Victoria. We can walk to almost every need we will have. Kathleen's house is a 10 minute drive from the clinic. Because we will be away from our house, we will have less encumbrances and be able to get more therapy, homeschooling and blogging accomplished while we are gone. It shouldn't be much more expensive than living at home, as we will have a kitchen to cook in. Victoria is a very nice place to be. It's a progressive city, and it will be fun to be in a different country for a while. Victoria is also in a rain shadow, so it should be less rainy there.

The tank is hard-sided and can accommodate up to 3 people sitting up, so it should be less claustrophobic for Naomi.

Negatives: We will miss DH, our animals and our friends!!

And that is my complete analysis! We are choosing the medium price option for this go around. If this round of HBOT is effective, we may try to do Option 1, the next time.

Do you have an HBOT story to share? Please comment away!

M&M

How Will You Know HBOT is Successful?

Here is a picture of Naomi's therapist, Sherryl, measuring Naomi's active and passive range of motion in her affected ankle.

The question, "How will I know HBOT therapy has been worth it?", will be a hard one to measure. We will take pre-treatment and post-treatment measurements and video's, but we aren't going to just do straight HBOT.

My Theory

I have a theory. My theory is that if I can stimulate different parts of the brain during or inbetween our two sessions a day, that we might have greater results than if we just did HBOT alone. As this session may be the only chance we might have in Naomi's life to try this therapy, as long as she improves, I don't care how much is HBOT and how much is repetition. I know from experience, about how much repetition can help and what skills we have attained thus far.

From another mother, whose son also did HBOT in Canada here is her list of improvements she saw and what we hope to see:

Basically, the obvious changes I noticed in the children who received HBOT were:

• Reduction in spasticity


• Increased ROM


• Increased ability in eye tracking


• Increased ability in sitting up straighter


• Increased memory


• Improved speech

I am not sure how to measure memory, but it is a certain problem that Naomi suffers. Does anyone out there have any suggestions about how to measure memory? Speech should be apparent, and is not something that we are currently woking on.

Our Plan:

We plan to do the following:

• Yoga (Sun Salutations)


• Ankle Range of Motion exercises


• Cross-crawl patterns


• Spanish


• Mental Math


• Spelling


• Shoulder Range of Motion


• Suppination range


• Music

All of these, with the exception of Yoga, we plan to do in the tank. Usually what happens, is you go into the tank and watch movies to distract the patient from the process. While we plan on doing the passive movie thing our first trip down, our goal will be to gradually introduce some therapy while in the tank.

What is Suppination?

For those friends who are not steeped in the lingo of therapy, suppination is the degree to which you can take your out-stretched arm (right palm facing left) and turn it palm up. Before we started doing Constraint Induced Movement Therapy (CIMT) (as championed by the nice people at U of Alabama), Naomi had 0% active and only slight passive range of motion in suppination. Through CIMT, she has gained 40% active range of motion. Most people can do greater than 90%. Passive range of motion is a therapist turning your arm for you. Active range of motion is what you can do yourself.

To Sum up "Successful"

I will know our mission is successful partially by external measurements (like those of suppination), by video, and by personal observation. I am sure scientifically personal observation isn't all that valid, but as her mom, teacher and sometimes erstwhile therapist, (as well as being the person absolutely most vested in seeing real improvements) I have a pretty darn good idea of her current capabilities and pitfalls.

Thank for sharing this exciting journey with us!

How About Some Research?

Currently, all of my impetus for doing HBOT comes from anecdotal evidence--ie praises made for the technology from other moms who also have children with Cerebral Palsy. While the medical community eshews anecdotal evidence, I have found through my career of improving Naomi's life, that motherhood desire to improve the life of ones child can be second to none. Also I look for people for which a particular therapy doesn't work. One alterative doctor said to me that almost no therapy works for more than 80% of the population--just hope you are in the 80%, not the 20%. To that end, I haven't found anyone who has spent the time, paid the money and been unhappy with the results of HBOT.

I also do a lot of research and read medical journals to see what scientifically has been proven in clinical trials as well. Here is a study of HBOT for diplegic CP kids who had reached a plateau in their gross motor skill function prior to HBOT. This study indicates that there was quite a bit of success. Naomi is (thankfully) hemi-plegic (one-sided involvement) rather than di-plegic (two sides of involvement), but one can extrapolate results.

http://archive.rubicon-foundation.org/dspace/bitstream/123456789/2324/1/10642070.pdf

Do you have a story? Can you say that HBOT therapy wasn't worth the money? Was it the best thing to happen to either you or your child? Tell your story here!

What is Hyperbaric Oxygen Therapy?

With Hyperbaric Oxygen Therapy (HBOT) one breathes 100% oxygen while sitting in a specially designed pressurized chamber. This therapy enhances the body’s own natural-healing process.

"Hyperbaric" is any pressure greater than the pressure at sea level (1.0 ATA). The greater the pressure, the greater the dose of oxygen delivered. In addition to pressurization, the percentage of oxygen is increased from room air (21% oxygen) to 100% oxygen.

The limiting factor of oxygenation at normal pressures (1.0 ATA) is our own blood and tissue physiology. At 1.0 ATA (atmospheres absolute), the red blood cells are able to carry only a limited amount of oxygen. At higher pressures, oxygen is more readily dissolved into all bodily fluids, including blood, plasma, lymphatic fluid, cerebrospinal fluid, and interstitial fluid.
This increase in oxygenation helps to reverse states of tissue oxygen depletion, known clinically as hypoxia, which is often a leading cause of cellular damage during disease states.

"Off Label" yet appropriate indications for HBOT include the following:

Stroke, Cerebral Edema, Lyme Disease, Autism, Migraine & Cluster headaches, Near Drowning, Brain Injury (cerebral edema/coma), Peripheral Neuropathy, Chronic Fatigue, Cerebral Palsy, Peripheral Vascular Disease, Immune System Building, Multiple Sclerosis, Sports Injuries, Spinal Cord Injury, Elective Plastic Surgery - recovery.

Hyperbaric Oxygenation is also an excellent therapy when used in combination with other Rehabilitation & Sports Medicine programs.

Medically "Approved" Conditions
Treatment chambers utilizing pressurized oxygen are currently in use in major hospitals for the following emergency conditions:

Air or gas embolism, Carbon monoxide poisoning or smoke inhalation, Gas gangrene/Gangrene, Crush injury and acute traumatic ischemias, Decompression sickness, Enhanced healing of selected problem wounds, Blood loss anemia, Necrotizing soft tissue infections, Refractory Osteomyelitis, Osteoradionecrosis, Compromised skin grafts, Thermal burns, Radiation tissue damage.