Jessica to date
has had a total of 215 treatments and she is a totally different
child. Another MUM, Sherri, who brings her son's companion dog once
a year to demonstrate at Jessica's adult program called me and asked
what I had done to Jessica. I asked her why. She said, "Well last
year I saw Jessica and asked her a question three times before she
answered by pointing to "yes". This year she drove up to me in her
powerchair and asked how my dog was.
This
demonstrates the new Jessica. The most profound change in her is the
lessening of her autistic behaviors. Her thought patterns are more
mature and complex. She wishes she could get married and that she
would like to "try" and drive a car. She initiates conversation, is
so aware of her surroundings we have to be careful what we say in
front of her, where before she was in her own little world.
Her father
wanted to make her a CD of music and I told him she never indicated
an interest in music, but I would ask her. She spelled out, "Walking
on Broken Glass", Sit Down, You're Rocking The Boat" and "Uptown
Girl" I was astonished! She listens to her music CDs all the time
which is more age appropriate.
She can problem
solve now. Recently she spelled out she wished we had an elevator so
she could go down in the basement. Her sister just moved out into an
upstairs apartment and when I told her I cannot show her the
apartment because of the stairs, she asked me to make a video of it
for her to see. She likes to watch "Sex In The City" (how normal do
I want her to be? :>}) and reminds me a few minutes before 8 o'clock
every night to turn on "Larry King Live". She never even watched TV
before HBOT. She tells me when she has a headache, is sick or if her
tray is dirty. She even laughed and called me stupid!
Another new
development which prior to HBOT she was unable to do is that Jessica
has a job making personalized stationery and envelopes and brings
home a paycheck ! She never had the interest or ability before.
Throughout her years of schooling a constant goal that was never
reached was for her to tell me what went on in school. Now she
voluntarily tells me she went to the museum, or that they had "Take
Your Daughters To Work Day". Her communication and social skills are
becoming near normal thanks to HBOT. Although she has been G-tube
fed for the last ten years she is eating more by mouth and even eats
corn-on-the-cob without difficulty.
Every parent
fears for the future and worries who will take care of their child
when they no longer can. With Jessica's new awareness and
communication skills I feel more confident she will be able to
communicate her needs and will better be able to fend for herself
when I am gone. It is so amazing how the brain can improve after 25
years with Oxygen and a little pressure. I have gathered 100s of
cases but I will present just a few, but please read the other
documentation I have brought for your review:
In 1998 a five
year old little boy in Texas, Edgar Gonzalez, who was hit by a car
and had a traumatic brain injury was in a coma for three weeks with
a score of "7" on the Glasgow coma scale. A hyperbaric doctor in
Galveston, Sally Robinson, tried Hyperbaric Oxygen treatments on him
and he is now back to normal except for a lumbering gait when he
walks! One of our MUMS in the Galveston study triggered by the
success with Edgar told us her daughter's vision went from
cortically blind to 20/20.
Shortly after
his daughter Rebecca's complicated birth and cardiac arrest for 35
minutes, Ed Nemeth of Sacramento, California and his wife were
presented with the unspeakable, yet strongly suggested single choice
for their first-born child: discontinue life support or allow their
child to continue brain dead. Devoid of options the Nemeth's
discontinued life support; Rebecca rallied and lived. Five years
later through their indefatigable efforts the Nemeths found HBOT and
after a short course of HBOT their daughter experienced a quantum
leap in neuro-cognitive function and significantly improved movement
and coordination. Ed is now involved with two hyperbaric clinics and
funded the Second First Symposium On Hyperbarics and The Brain
Injured Child in Florida because of his interest in furthering HBOT
for children like his Rebecca.
Shannon Kentiz
of Wisconsin called me crying that her two year old daughter, Gracie
who had Cytochrome-C-Reductase Disorder and was on life support.
This is a very rare mitochondrial condition (there are 40 types)
that destroys the brain and the doctors told her the five children
they knew about all died by the age of 2 years. They were pressuring
Shannon to remove the life support and she said she could not watch
her baby die. Shannon was given no options. I explained to her that
no one had tried Hyperbaric Oxygen Therapy on Mitochondrial
Disorders, but maybe it was worth a try. Since she had nothing to
lose, she brought her daughter to Florida by ambulance. Gracie was
lethargic and blind and in a coma.
After
hyperbarics she is walking, pulling the pens out of her doctor's
pockets and can see. Her mitochondrial disease is totally gone and
they now think with more HBO she will be normal. I spoke with her
ophthomoligist in Madison who was so amazed he is doing a study
using HBO for visual problems. Carlos Ponte, Gracie's pediatrician
was so impressed he has changed his career direction, has moved from
Wisconsin to Florida and is studying to be the medical director of a
Hyperbaric clinic there.
Michelle Divino
from Illinois has two children with Autism. Her son age 9 years was
somewhat verbal before treatments, but echolalic (repeating what
others said only), had obsessive behavior with self-stimulating
behaviors as a norm. He would typically play obsessive games to
amuse himself, screaming to vocalize his needs, and only used nouns
to communicate. After 40 HBOT he properly uses pronouns, is using
prepositions, conjunctions, and will repeat his sentences over and
over until he is satisfied with how they sound. He has shown real
emotion, and even told a lie! He is now able to tell what is wrong
when he is upset. He says "good night" spontaneously.
Once he said
"Look at that green car, it's beautiful". without any prompting at
all and said he a certain game he was playing. Her daughter is 2 and
a half, nonverbal, and somewhat aloof showing very little interest
in her mother before treatment, preferring her father. Her daily
routine consisted of watching videos all day and "reading" her
magazines and books. After the first few treatments her daughter
said, "bye-bye" and "mama" and began to began to seek out her mother
to play. She showed more interest in her siblings as well. Her
interest in videos slowed down and she began playing in the sandbox
which was taboo before HBOT. She began to run (which she was unable
to do before HBOT) and attempted stairs one foot over the other
versus one stair at a time. Overall she became more aware, less
aloof and will look at her mother and smile when she says hello 2
out of 10 times versus not at all.
One of our
fathers whose son had a near-drowning episode while he was visiting
his sister in California knew about Hyperbaric Oxygen Therapy before
the incident. He told me he literally got down on his knees, crying
and begging the doctors at Loma Linda to treat his son. They
refused. Debbie, a MUM in Wisconsin, was pregnant with twins, and
had her leg amputated because of flesh-eating bacteria. When this
failed to stop the spread of the bacteria she was given HBOT which
totally killed the bacteria. Why was HBOT not the treatment of
choice before amputation? The twins were 24 weeks premature and both
have Cerebral Palsy. Her other child has Achondroplasia dwarfism.
I called a
doctor that I heard from parents was treating children with Cerebral
Palsy-sneaking them in the chamber. He told me he would treat
children with brain injuries, but that I should not publish it. He
said he was seeing the same improvements in the children that was
documented in the MUMS' newsletters. He then told me that he had a
51 year old friend who had suffered a viral encephalopathy and had
been in a coma for five weeks. All the tests they did on him, MRI,
EEG, showed no brain function and that he was clinically dead. The
ventilator was removed but he did not die. He told the family that
before they made the final decision to stop feeding him, he wanted
to put him in the chamber. After the Hyperbaric Oxygen Treatments
his friend walked out of the hospital, not well, but of his own
accord!! I asked him why he wasn't shouting this from the rooftops?
He told me he would lose his job for treating off-label. What state
is our medical system in that our government allocates millions of
dollars for research each year, yet doctors are afraid to come
forward with the truth about HBOT for fear of retribution?
David Freels of
Georgia has a 10 year old son Jimmy who has Cerebral Palsy. HBOT
improved Jimmy tremendously so David asked his state Medicaid to pay
for the treatments. When they refused he sued and won. He based his
claim on the language of the EPSDT statue that states in paragraph
(5) 139d(r) that States provide "such other necessary health
care...treatment and other measures...to correct or ameliorate
defects and physical and mental illnesses and conditions discovered
by the screening services, whether or not such services are covered
under the State plan." The state has appealed.
Ga. Dept't of Cmty. Health v. Freels, 576 S. E. 2d (Ct. App. 2002).
Held that the EPSDT statute required only that a treatment be
necessary to correct or ameliorate physical or mental conditions,
not that a treatment be an acceptable standard of medical practice.
Finally I
present you with the story of Kevin Fickle who I consider the poster
child for Hyperbaric Oxygen therapy. Kevin Fickle of Slidell,
Louisiana was 11 months old when a viral encephalopathy put him in a
coma. He was on life support, had five infarcts to his brain and all
his organs were shutting down. His doctor knew about HBO, but
because of the off-label ban on using it for brain damage he had to
wait until Kevin developed the typical meningitis sore on the back
of his head eleven days later. This was the ticket he needed to
justify use of the chamber for wound healing. After three treatments
Kevin fought the ventilator and after ten he was crawling around the
chamber. His parents are members of MUMS and update me with pictures
periodically. The only side effect he still has is a speech delay
otherwise he is a normal boy. If he had been able to be treated
earlier his speech would probably not have been affected. His story
was featured on Lifetime's Beyond Chance with Melissa Etheridge.
I get calls
almost daily from parents with questions about HBOT. They cannot ask
their doctors who have no training in this field. Dr. Harch, who is
on the MUMS' Medical Advisory Board has been kind and dedicated
enough to respond to many of them personally. He and I cannot keep
up with the demand and there needs to be a better system for
dissemination of information. Without studies we do not have the
answers. We can only guess from our experiences and those of others.
//www.musa.org/Stories/kevin_fickle.htm
With our nation
in an economic crisis we cannot afford to ignore the possibility of
HBOT reducing not only the medical costs, but the excruciating,
life-altering pain and suffering experienced by so many. The parent
movement has taken on a life of its own. Desperate parents are going
to continue to get HBOT for their children no matter what you decide
today. Some are even talking about treating their children with
scuba gear and 100% oxygen at the bottom of their swimming pools. We
are crawling into chambers in the back of semis hidden on Indian
reservations and in warehouses and having chambers installed in our
homes. Parents are second mortgaging their homes and taking out huge
unrepayable loans. Nothing can stop parents from getting HBOT for
their children, but you can help us make it safe and available. We
need studies to determine the safest and most efficatious protocol.
The question is
not whether Hyperbaric Oxygen Therapy works. The exciting question
is what other conditions will Hyperbaric improve or cure. With your
help, the testimony you have heard today could help revolutionize
the medical industry and put hyperbaric oxygen as a treatment of
first choice rather than a last resort. Infants born with severe
brain damage could be sent home as normal babies. People involved in
accidents suffering from traumatic brain injuries and those who have
strokes could have the damage to their brains reversed or eliminated
if treated immediately.
You know in your
heart, after what you have heard today, if a loved one of yours
incurred brain damage you would be desperately looking for the
closest hyperbaric chamber too.
Thank you so
much for your valuable time.
Julie Gordon
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