A letter to the
editor in Exceptional Parent Magazine from two parents requested
more information on HBOT. I wrote and the response with MUMS'
address and phone numbers was published in the magazine so more
parents called and letters poured in. The letter I had responded to
turned out to be from Claudine Nadeau from Quebec and Debbie Nardone
from Illinois. Debbie was a member of MUMS and met Claudine through
the Internet. Debbie shared the information she had from the MUMS
newsletter and the two of them decided to meet with their sons in
England to get HBOT.
When Claudine
brought her twin sons, Michel and Matheau, back from England, Dr.
Marois, their pediatric physiatrist, was amazed at their
improvements. Claudine and he approached McGill University in Quebec
to do a study. As a result, the McGill Pilot Study took place Oct 15
Dec. 15, 1998 in Montreal. The results were amazing considering the
25 children ages 3 to 8 years old with spastic diplegia Cerebral
Palsy only got 20 treatments at 1.75 atmospheres. Results showed
reduction in spasticity in hip adductors, hamstrings and ankle
plantar flexors. Patellar tendon and Achilles tendon reflexes were
found to be significantly reduced. It was reported that there was
significant improvement in the children for walking and sitting as
well as for knee walking. The study concluded that HBO improves
function in children with spastic diplegia, Cerebral Palsy.
Following the
results of this study, a group of parents from Quebec, spearheaded
by Annie Lachaud, organized a Parent Movement to further research on
HBOT. Because of the pressure put on the Canadian government by
these parents, 1.2 million dollars was allocated for another McGill
study which included 111 children at three different locations. The
study was completed in August 1999.
As Dr. Paul
Harch has stated, "The real story behind the McGill Pilot Trial is
not the findings of the study, it is the story of a group of mothers
organized and connected by the MUMS Network and Internet who became
a force so powerful that they were able to overcome tremendous
resistance and accomplish what a group of physicians were unable to
achieve in over 50 years."
Because of the
studies and requests from Canadian parents more clinics opened in
Canada. In 1999 a new HBO clinic with a 10 person multiplace chamber
was opening in Coquitlam, British Columbia and offered me free
treatments for Jessica when they called to get on our HBO clinic
list. I had never really thought about getting her treatments
because I couldn't afford them and I truly felt at age 25 years old
it was too late. But how could I turn down this wonderful
opportunity? Parents had shared the names of organizations that
provide free airline travel to children for medical purposes and I
contacted one and we were approved. Amy, a friend from Palm Springs
flew with her 11 year-old son, Ari, who has severe Cerebral Palsy
and Autism also and the four of us shared a hotel room. Our children
each got 40 treatments with a protocol of 1.75 ata twice a day. We
know now this was a dangerous protocol because 1.5 ata is safer and
more effective, but we were all experimenting with our children and
we followed the protocol used in England. During his second
treatment, Ari's tight arm easily could be raised above his head.
His speech became clearer and his legs more relaxed and his Autistic
behaviors lessened.
The noticeable
changes in Jessica occurred after about the 20th HBO treatment. Her
muscle tone became much more loose especially when she was in a
relaxed state. Her posture in her wheelchair became straighter and
her head control much better. She used both her hands together much
more. She even lifted a towel off her tray with both hands to wipe
her mouth off. She used to slide off the bench in the chamber, but
now with her relaxed legs she could sit with ease and with only
slight assistance from me.
Her alertness
and attention span increased. One technician noticed she seemed
"more animated". She enjoyed having me read books to her which she
never had the attention span to enjoy before. The sentences she
spelled out on her communication board were more complicated as are
the words and phrases and ideas she uses. She initiates
conversations now instead of needing prompting.
Prior to HBO
Jessica could only make the "M" sound and say "Mama". Jessica has
started to talk and can now say 5 words including saying her
sister's name, "Abbie". She can say "Hi" and delights in hearing the
new sounds come out of her mouth. Overall she just seems smarter and
more alert and happier.
Jessica was evaluated at Central Center in Madison, Wisconsin before
and after her Hyperbaric Oxygen Treatments. Previous evaluations
showed her getting more spastic. When stood Jessica's legs scissored
(crossed severely )and she was up on her toes. After 61 HBO
treatments her physical therapy report says, "Significant changes
(+/-) in the following: hip extension (10° to -15° right) and (5° to
-10° left), hip internal rotation (35° to 50° right and 35° to 55°
left), left shoulder abduction (135° to 145°) and her right wrist
extension (55° to 65°). Jessica also had an improvement in her
hamstring flexibility on the left as evidenced by improved straight
leg raises (45° to 55°).
When placed in
quadruped (on all fours), Jessica was able to weight bear on both
hands with hands open. She was able to accept the weight more evenly
on all four extremities and even began to weight shift back and
forth with assistance. She had attempts at moving her legs and also
advancing her left arm. During her previous admission (before HBO),
Jessica had difficulty keeping the weight back over her hips and
kept her hands more fisted and required maximal assistance so this
was an improvement. Movement into tall kneeling also improved." Her
improvements were documented! Now when I stand her, her legs are
apart and her feet are flat on the floor. I only need to hold the
back of her head for support. A recent report said her ankle
flexibility improved 20%.
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