PARENT STORIES ABOUT HBO TREATMENTS.
MUM'S Editor's Notes
August - October 1997 Julie Gordon (MUMS Newsletter #70)
As editor of a newsletter it is extremely important that information isn't published that would give families false hope or cause them further financial hardship by suggesting a miracle cure that hasn't been proven. We parents are vulnerable because we are so desperate to find a cure or treatment for our children. MUMS gets letters from excited parents about miracle nutritional products or new treatments but we hesitate to publish these until we hear from numerous parents with good results. There is a new treatment that I do feel has enough evidence that I must share it with you and let you decide. Because my daughter, Jessica, has Cerebral Palsy from brain damage during delivery this new possible treatment is especially exciting for me personally, but I am afraid to get my or any of your hopes up. So it is with caution I tell you about Hyperbaric Oxygenation Therapy, a treatment successfully used in other parts of the world and especially in England that seems to be drastically improving children who have brain damage and Cerebral Palsy. We read about it in the Linkhands newsletter from England over two years ago but we wanted to do more investigating first.
MUMS gathered information on HBT and sent packets to a pediatric neurologist, pediatric neurosurgeon and 5 parents. The neurosurgeon said, "Not a new idea but now its combined with a SPEC scan. I never heard of the people doing this but it bears watching." We knew the tremendous impact of this information when two of the 5 parents dropped everything and flew to Florida for 11 days to try it. They both have daughters with Cerebral Palsy (9 year old Kaylee with severe Cerebral Palsy and 7 year old Danielle with mild Cerebral Palsy with ability to walk). Both reported immediate dramatic improvement. Kaylee was relaxed and more flexible and for the first time in 4 years could lie on her stomach. Laura was able to walk much better. Both mothers wanted their own Hyperbaric Chamber and Kaylee's mother was able to get one donated. She is trying to get it overhauled and working. Before she went to Florida, Kaylee's mom called Linda, the mother in England to talk to her personally. Linda's son had gone from a wheelchair to a bicycle. Kaylee's mom even attended the worldwide Hyperbaric conference in Argentina to tell of the girls improvement.
Autism & HBO treatments
As an update on the Hyperbaric Oxygen therapy as a treatment for children with brain damage, Cerebral Palsy, traumatic head injuries, etc., we were very excited to hear from Trish Planck who owns and operates HBO chambers in Reno, Nevada and Santa Monica, California. She is working with Bernard Rimland, M.D., the renowned Autism expert who himself has a son with Autism. They have discovered that HBO drastically improves the children with Autism also! Dr. Rimland told one parent he mentioned the positive effects of Hyperbaric Oxygenation treatments in a book he wrote in the 60's! This treatment certainly makes sense for the treatment of Autism, especially if it is caused by brain damage, which I believe it is in the majority of cases. Trish has treated 2 boys with Autism neither of which had any eye contact or talked, both now have eye contact and both are verbalizing. A letter from one of these MUMs whose son with Autism was treated with HBO is on page 8! We also added to the list of possible places to go for treatments. MUM'S NOTES (Newsletters #73 May - August 1998 )
HBO isn't for everyone.
If your child has enlarged ventricles (the place where cerebral spinal fluid is made and circulated), the chamber may aggravate the condition. HBO therapy will put pressure on the brain, you have to ask the doctor what the risks are for your particular child. It isn't for children with progressive conditions. It isn't for children with congenital anomalies resulting in structural problems in the brain or delayed development. It works best with children who have acquired brain damage (injuries, lack of oxygen, blood clots). If your child is on a vent, they must have written permission from their doctor to be off the vent for more than 6 hours at a time. Feeding tubes, G-buttons, and trachs weren't generally a problem. Just keep in mind, if something happens while in the chamber, the staff can't just "pop the top" and get you out of there. You have to decompress first, and that takes a moment or two. You have to know your kids. There is a slight risk of seizures while undergoing the treatments. My son had a previous problem with seizures, but I did not see anything while I was there. Some kids will not tolerate being in an enclosed area for an hour at a time. There is TV and radio available, but that may not be enough. If there is room, you can go in the chamber with your child.
Many parents did this, it worked well. My son is very active and didn't like the cramped conditions with me in there with him. He did quite well on his own. Please keep in mind, I am not a doctor, I'm just a mom. My information
comes from my experiences and those of the other parents I have encountered during my stay. I hope this information can shed a little light on this new therapy. It may make a difference, it may not. Our kids deserve the chance to find out. I am at peace because I tried. I knew that if I didn't I would forever kick myself for knowing about this treatment but never giving it a chance. Come what may, I know I have done everything in all my power to help my son have a more whole life. I wish you all the best. Fran, Michigan. See Dr. Paul Harch's correction to some of Fran's statements about HBO:
RESPONSE FROM DR. HARCH.
The article by Fran from Michigan had a number of inaccuracies that your readers should note. She mentions that if the child has enlarged ventricles the chamber may aggravate the condition. This is absolutely false. She is mistaking a "high pressure" condition in the brain with the effects of subjecting the entire body to elevated pressure. Elevated pressure, as occurs in a hyperbaric chamber, is distributed equally throughout all body parts. The only problems caused from pressure differentials, ie - barotrauma, only occur in gas filled spaces. Liquids and solids are
effectively non-compressible and, as such, there is no effect on CSF fluid pressure independent of the rest of the brain. She also mentions that hyperbaric oxygen therapy is not for progressive conditions. I don't know where she obtained data on this, but it is not true. We treated a 2~ year old girl who had been evaluated at Mayo, Johns Hopkins and Children's Hospital in Washington, D.C. At Mayo, according to the mother, she was told the child had six months to live from a degenerative neurological condition, Hopkins gave the mother an organ donation card, and Washington Children's was unsure of the exact diagnosis, but the prognosis was poor. This little girl made a turnaround under our hyperbaric treatment and is alive today, nearly a year and a half after her hyperbaric treatment. Fran also mentions that it's not for children with congenital anomalies resulting in structural problems in the brain or delayed development. Again, I don't know how she can make this statement. Some structural problems may, in fact, be blood vessel related or have a problem with blood vessel supply to the brain. If this is true, then there is a theoretical reason via ischemic penumbra arguments on how hyperbaric oxygen therapy may be beneficial in this instance. She mentions that it works best with children who have acquired brain damage. And that's true but we have no idea which children with delayed development or
congenital anomalies in fact have an acquired etiology, either from an in utero problem or birth related or early neonatal problem. The overall message here is that we can't be too rigid about selection until we have a lot of negative data showing it does not work in children with very specific known conditions. Fran goes on to mention about some children not tolerating
enclosure for an hour at a time. That hasn't been our experience. The vast majority of children do very, very well and particularly well when their parents are not nearby. They watch TV. If there is truly a child who does not tolerate the treatment, they can be sedated, if necessary. She also mentioned that her son was very active and didn't like the cramped conditions with mom in the chamber. We have only dove a mother with a child in a handful of cases. When the mother saw how well the child tolerated it on the first treatment, they no longer dove with the child. We strongly recommend against any parent being in the chamber because of these cramping problems unless there is a major risk to aspiration with the child. Safety considerations then override other considerations.Paul G. Harch, M.D., Van Meter & Associates, 3052 General Collins Ave., New Orleans, Louisiana 70114 504-366-1445 504-366-1029 (fax)
HBO TREATMENTS TO SAVE FEET, HELPS BRAIN !!
My son Bryce was born 5 years ago with Arthrogryposis, Microcephaly, Sagittal and Bicoronal Synostosis with Scaphocephaly, Agenesis of the Corpus Collosum, a variant of a Dandy Walker Malformation, Micrognathia, Pierre Robin sequence, and kidney abnormalities. He was one of the most precious gifts my husband and I had ever received. More than 30 anomalies, diseases
and syndromes had been diagnosed and we were told his prognosis was poor. At birth he was not expected to survive the first few hours. No advanced medical treatment was initiated or offered. Bryce was sent home the day after he was born to die. Bryce's skull was so severely deformed that his brain had stopped growing 3 months before he was born. All sutures had
closed prematurely and his head was a solid mass of odd shaped bone. His little brain was under an incredible amount of pressure. He had no newborn reflexes, no ability to suck or swallow. At 4 weeks of age, the seizures began. During his first year, Bryce made it through 4 surgeries and 11 pneumonia's. His first surgery corrected his skull to allow for brain growth, although the doctors did not expect any. A week after his first birthday, Bryce underwent radical surgery to correct his severely clubbed feet, but while still in surgery something went terribly wrong. Bryce's feet had lost all circulation and were totally white. Investigation led to the discovery that Bryce had no tibial arteries and the surgery had cut through the only blood supply Bryce had to the feet. The feet were put back into their original clubbed position with the hope that circulation could be achieved if the vessels could knit themselves back together. Five days later, bandages
were removed and Bryce's heels were hard and black and the rest of the tissue was purple and grossly swollen. We were told amputation was our only choice. An orthopedic resident who had assisted in the surgery surprised everyone when he asked if saving the feet with hyperbaric oxygen therapy was a possibility. Bryce's team of doctors had not heard of it and didn't know
where an HBO unit existed. The team was surprised when it was discovered that an HBO unit was one floor up in that very hospital and was used for this type of therapy on a regular basis for adults. If Bryce could be cleared to use it, he would be the first child to receive therapy for any reason other than carbon monoxide poisoning. It took 6 doctors working together to make it possible, but it was done. Bryce underwent surgery to place PE tubes in his ears (to prevent painful pressure in case of undetectable fluid or infection behind his ears) and sedation had to be
decided. Bryce spent 2 and a half months in the hospital and underwent 51 HBO treatments. Each treatment was 2 hours including the 15 minutes to pressurize and then again to depressurize. Both feet suffered significant loss despite the extraordinary measures to save them, but the little that was saved has regenerated and is usable. Bryce still has crooked little
feet, but all toes have grown back, he has feeling in them. They're even ticklish! Even now, 4 years later he has begun to develop some noticeable tendon tissue and is beginning to get some movement in his forefoot. Although Bryce's feet were not completely saved with the HBO, we have seen other developments in Bryce that are nothing short of miraculous. Arthrogryposis causes Bryce's joints to be fixed, hypermobile or missing completely. For 2 years he was unable to raise his arms to reach for a toy, he could not raise or turn his head if on his tummy, and there was no expectation of him ever being able to roll over. With the multitude of brain anomalies physicians never expected Bryce to be able learn or develop cognitively. Then at the age of two, 1 year after HBO treatments, Bryce began to reach out for toys. Within the next 3 months he learned to roll over. One by one Bryce began to master skills and explore his world. Bryce is still considered severely delayed but, he continues to make daily gains. He is bearing weight with support on the remnants of his feet, playing with other children, crawling, sitting independently and learning to sign complete thoughts. Bryce can vocalize and say a few words and has even devised an ingenious way of using his thumb to help him form letters to compensate for problems his jaw deformity causes. It is obvious that even though his language skills are poor, his cognitive abilities are good and improving daily. He understands everything! Without the benefit of any speech therapy, Bryce is finding ways to teach us to communicate with him. This little boy, who once could not turn his head or pick up his arm, is now lifting and throwing diningroom chairs, rearranging our livingroom furniture and is being put into time out at school for getting into the drawers of the filing cabinet. Bryce no longer has Microcephalic and his last MRI showed that parts of his brain have grown. The Agenesis of the Corpus Callosum at birth became dysgenesis a few months after the HBO treatments as 3 parts of the corpus callosum grew. His neurosurgeon tells me this is impossible. Brain tissue does not grow or regenerate this way. Somehow for Bryce it has. I can not say how much of Bryce's remarkable development is due to the HBO. I do believe it has played a part, just as our family's love for him, the many prayers said for him and his own determination have. What I can say
without any doubt is that Bryce was sent here for a purpose. With God's grace, Bryce will fulfil this purpose as he continues to fill those of us around him with an incredible sense of peace, and hope, because if Bryce can do all this, then nothing is impossible! (Arthrogryposis, Agenesis of the Corpus Callosum, Dandy-Walker, Pierre Robin, Kidney disease, Tracheostomy) Mark & Julie Decker.
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MUMS Newsletter #71 November - January 1998
Much has happened since our last issue about Hyperbaric Oxygenation Therapy as a treatment for brain damage. Over 90 people ordered packets of information from us. Our packet grew as information poured in from all over.
Linda Scotson, the mother from England whose son, Doran, was so miraculously healed of his Cerebral Palsy by HBOT, called us excited that MUMS is informing parents in the U.S. about HBO. She said the children with Cerebral Palsy using HBO treatments in England are saying how their arms and legs no longer hurt. These children had never complained of being in pain, but as the HBO treatments relaxed their spastic muscles and the pain went away they were aware of being pain free for the first time.
Peter Jennings reproted on ABC World News Tonight that researchers have discovered that HBO treatments are benificial to patients who have had a stroke! HBOT actually grows new blood vessels. It was recommended that the
portable chambers that are brought to the beach to immediately help divers with the bends could be used by emergency technician transporting a stoke patient to keep the brain tissue healthy during transportation.
Laurel Kazik from Green Bay has her chamber in her garage almost ready to go and is in Florida receiving HBO trainings. A nurse from her Home Health agency is also getting the training as she was so impressed with Kaylee
Kazik's improvement after the HBO treatments she had in Florida 2 years ago.
Mark & Deb, a doctor in Fond du Lac and his nurse wife, are bringing their daughter, Julia for treatments with Dr. Neubauer in Florida. Mark is planning on opening up a Hyperbaric Chamber Clinic in Fond du Lac to treat his patients who have had strokes, his own daughter and other children with Cerebral Palsy.
Paul Harch, M.D. at the JoEllen Smith Hyperbaric Medicine Unit, New Orleans, LA treated 18 children and all 18 showed motor, behavioral, personality or cognitive gains (6 noted changes the first day!).
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MOTHER AND 3 DAUGHTERS ALL CURED WITH HYPERBARIC OXYGEN THERAPY!!
Dear Ms Julie Gordon, Thank you so much for the honor of being included in your newsletter! Finally after many years of waiting, I am able to give credit to the people who have helped us, and may help other parents and their children as well. I intend to focus on my three little girls, however I think it is also important to explain the illness that I had. In doing so, I feel it would be easy to understand the familial disorder and how, by using Hyperbaric Oxygen Therapy, we all were able to regain our health and lead a normal life.
In 1991, I was diagnosed with Lupus, Cerebral Vasculitis, Rheumatoid Arthritis, including Auto immune markers in the spinal fluid that indicated a demyelination process of acute Peripheral Neuropathy, all of which where documented by S.P.E.C.T. scans, blood tests, skin biopsy, spinal taps, and lower and upper EMG’s. I was treated using Hyperbaric Oxygen Therapy, or HBOT for 28 treatments. Afterward I was sent back to the doctor, who ordered additional S.P.E.C.T. brain scans, spinal taps, skin biopsy, EMG’s and blood work. All of which had returned to normal! My doctors have since written many letters fully endorsing Hyperbaric Oxygen Therapy treatment!
I have three little girls, all had very unusual illnesses constantly through out their childhood. These included: joint pain and swelling, grand mal and petite mal seizures, kidney infections, Asthmatic Bronchitis, Otitis Media, high protein in the urine, back and neck pain, gastrointestinal reflux confirmed by biopsy, chronic constipation with fissures, headaches, skin rashes caused from going in the sun, skin thickening, yeast infections, both vaginal and under the arms, delayed speech, positive ANAs with patterns, abnormal S.P.E.C.T. brain scans. Final diagnosis was Collagen Vascular Disease with Lupus-like, Scleroderma overlap, Connective Tissue Disorder, plus CFS, and FMS. In short, a disease process in which the body's immune system attacks itself. It affected the central nervous system, joints, skin,
both internal and external. I had heard that Dr. Paul Harch treated children with success. I sent my own brain scans to Dr. Harch, MD and begged him to treat my three children. He agreed to meet with us in New Orleans. I drove the three children out to New Orleans to meet with Dr. Harch, for I knew that this was the only treatment that would work, and had saved my life! All three of the children were given S.P.E.C.T. brain scans before and after treatment as well as blood work. The first set of blood tests revealed a sedimentation rate of over 100 in one child and upper 60s in the other two, indicating gross inflammation. After treatment, the sedimentation rates were normal! The brain scans were improved to near normal as well! Since then, my children have received Hyperbaric Oxygen Therapy about twice monthly. After 40 treatments, the difference in our life is without words! They have great health, they can play in the sun, and all of their grades have improved to the point of being on the Principal’s Honor Roll, and the Program for Gifted. Hyperbarics and Dr. Paul Harch have impacted my life to a point which it will never be the same! I can never thank Dr. Harch enough. He is our Hero! We are deeply grateful to him. For this reason, we have opened a Hyperbaric Center! I have been there and I know that it is financially hard on the families, both children and adult patients. Our Center, Rapid Recovery Hyperbarics, has a motto: "We do not feel that one must lose their home in order to gain their health!" "Hyperbarics saved my life, therefore it is my life!" Our goal is to provide Hyperbaric Oxygen Therapy at a reasonable cost, therefore, we vow to be the most reasonable treatment center in the nation. We have a pediatric and adult medical physician, Dr. Bhasin, MD, and have recently opened the: Rapid Recovery Hyperbarics, 1455 North Waterman Ave., Suite # 124-125, San Bernardino, CA 92400 909-989-3378, e-mails: hyperbaric1@earhtlink.net, chamber02@hotmail.com May God bless you, Susan and Patrick Rodriguez John 3:16 (MUMS Newsletter September - October '98)
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MUMS Newsletter #74 September - October 1998
We are receiving letters and emails with so many wonderful stories about Hyperbaric Oxygenation Therapy improving children with Cerebral Palsy and brain damage, that we cannot keep up. This newsleters contains the stories of Claudine Nadeau from Quebec, Canada and Debbie Nardone from Ilinois, who were mentioned in the last newsletter. Claudine Nadeau's twin's doctors were so impressed with the boys improvements after HBO, a study is being conducted at McGill University in Montreal Quebec, treating children with CP. We did receive one letter from a mother whose child has a rare metabolic disorder and has had 3 strokes. She got 22 treatments for her child and saw no improvements. Dr. Harch says that 40 treatments should be done, before you give up. Some show no results until 30. A 5 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 3 weeks. Doctors gave his mother little hope for any recovery as he had a severe injury and was rated a "7" on the Glasgow coma scale. A doctor in Gavleston tried Hyperbaric Oxygen treatments on him and he is now back to normal except for a lumbaring gait when he walks! This triggered a study at the University of Texas Medical Center (UTMC) and one of our MUMS had her child entered in the study so hopefully we will get more stories from that study. Another of our MUMS helped get funding for a study in New York by raising and contributing money. If you want the names of interested parents in your area so you can work together, let us know. Perhaps parents can combine the money they would spend on treatments and help fund a research project! More information is showing that HBO is helping people diagnosed with Lupus, Lymes Disease, Strokes, Cancer, AIDS, Reflex Sympathetic Dystrophy, and Multiple Sclerosis.
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Message from South Africa
Date: Thu, 14 May 1998
Dear Dr. Capria,
I just thought I'd take a moment to let you know the progress we've made locally here in Pietermaritzburg, South Africa with Hyperbaric Oxygen Therapy, with specific attention to its application in the treatment of Cerebral Palsy. You may recall I have sent you a couple of e-mail messages relating to the potential for this treatment for CP patients, to which you responded that it had possibilities that were worth trying out. Thanks for that; yours was one positive response amid a sea of negative ones. Based on yours and a couple of other promising responses which emerged later, my daughter (now almost 3, and a moderate spastic quad) traveled with Mom to London, England last year to get some treatment, the local practitioners being unable or unwilling to help.
Results were spectacularly good, so much so that 4 other families followed, and all felt that after a period of 2-3 months follow-up was required. Aside from a host of (all beneficial) side effects, the best generalization we can make about the early effects of HOT on CP is that 20 hours at 1.75 ATA (the English protocol for patients unable to undergo prolonged daily sessions) normalizes muscle tone, regardless of whether the child is spastic or athetoid; and that makes conventional physiotherapy very much easier and more beneficial. The parents involved adamantly believe HOT is a worthy tool in treating the condition. For financial reasons, we vigorously pursued getting the treatment locally, although all the parents involved would have gone back to the UK if we couldn't have come right here; but we have!
Locally established hyperbaric medical practices were not an option, due to exorbitant charges. So we hired a 4 man double lock chamber from a diving company, and have almost completed our first month of treatments, 4 'dives' a day; 2 children, 2 parents/caregivers per dive. This is a locally manufactured unit, with some limitations, particularly with regard to ease of entry and exit; but it does the job. We kicked off looking for a fourth child to make the whole thing feasible, and we now have more than 40 wanting to try the treatment. No negative stories to date, only positive ones; and some of the children are very severely affected. If we can collect any data (we've got trained nurses on hand and a certified operator) which you or any of your colleagues may find useful, we'd love to do this, seeing as we seem to have no interest from our local medical fraternity. Which is disappointing to say the least. We're running this project under the auspices of our local Cerebral Palsy Association, and not as a commercial enterprise. A vision for the future is emerging in which we see a local HOT facility, probably best within a hospital trauma unit, which could be equipped by us and run by the hospital. Medical aid here does pay for certain hyperbaric treatments (up to R960/hour is said to be cost effective, normally at least R600/hour) so we could use such income to cross subsidize treatment of chronic conditions such as CP. Our costs for CP treatment seem to be around R150-R200 per hour with the present set-up, although we are not paying rent and some other normal expenses. At present our Rand is 20 to 25 of your cents, I think. Our efforts have stirred up a bit of media interest locally, and we think this is a good thing as the therapy technique seems relatively unknown here. M-Net, a local pay TV station, which serves SA and a host of other African countries has expressed an interest in doing a story on our project, and I was wondering whether you would give me permission to refer them to you for some medical background, there being such a predominance of ignorance locally. I'm going to be asking Dr. Phillip James at the Woolfson Hyperbaric Medicine Unit at the University of Dundee, and one of his colleagues, Dr. Richard Neubauer the same question; I just think that we need someone medical who knows something involved. Local doctors, even some hyperbaric medicine practitioners have categorically told us it will not help, does not help, cannot help etc., despite the obvious evidence to the contrary which we see ourselves. We get the old story about it not being scientifically proven thrown at us all the time. It seems the
involvement the reporter would want would be along the lines of e-mail communication, perhaps a testimonial, and possibly even a phone call if they think the story warrants it. We would fully understand if you do not feel able to get involved, but I'm asking you this on the 'don't ask, don't get' principle. With a large rural population dependent on wood and liquid fuel for heat and cooking, burns are a big problem locally, and my reading leads me to believe HOT could really help in such treatment, so I don't think we'll be short of patients if our ideal of a local trauma facility flies one day! We hope that the media coverage will publicize the therapy technique, and that our approaches to South African business for financial support will thus be more successful. Many thanks for all your helpful assistance to date, and for recently for putting us in touch with Sea Long Medical Systems to source hoods, 4 of which are doing sterling work for us this side of the world. Looking forward to hearing from you again, My best regards, Neil McNab
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Car Accident - TANIA'S STORY
Four year old Tania Chapman-Fortune from England was paralyzed from the shoulders down after a car accident. Her parents had been told there was nothing that could be done. A few month later, her father heard about the Hyperbaric therapy (HBT) and how tremendous things were happening to severely disabled children. After the end of the first day in the oxygen chamber, Tania was able to hold her breath, within one week she was moving her legs and slowly was able to drag her legs upward. After three weeks, Tania's tummy muscles were working and she can move her arms freely. She has a good grip and can grip her mother with her thighs when she is lifted.
September 16, 1998
September 16th, 1998
RE: HYPERBEARIC OXYGEN TREATMENT London, England
from August 17th to Sept. 10th, 1998
Giulia Di Teodoro
5645 Des Artisans
St Leonard, Quebec H1P 1R3
tel: (514) 325-6833
DIAGNOSIS: Encephalopathie forme double hemiplegie severe secondaire a une anoxie neonatale
Previous to departure, Giulia, 3 years and 10 months old, with severe spasticity, had problems sitting due to stiffness, hands were always in fist like position, difficulty in swallowing, was tube fed via gastrostomie most of the time (puree food).
Observations:
Aug 20/98 8th DIVE
- makes less fists with hands
- once under oxygen hands and arms would relax more
Aug 21/98 10th DIVE
- hands fully relaxed after treatment, not in fists
- less stiffness in legs
Aug 26/98 15th DIVE
- Eyes are more focused
- hands still remain relaxed and not in fists
- less stiffness in legs, moves them more easily
Aug 27/98 17th DIVE
- Eats much better, seems to chew food
- swallows water without choking
- tongue less spastic
Aug 28/98 19th DIVE
- legs less spastic most of the day
- sits more relaxed
- when relaxed and calm both hands and legs have no stiffness.
Conclusion:
Beginning of treatment, Giulia was severely stiff, when lying down on the floor, she would always arch her body, now when lying on the floor, she lies face front with both arms on her side and a lot less stiff. Hands are most of the day open and not in fists like position. She sits more easily with her legs dangling rather than straight with stiffness. Cries a lot less, maybe because her muscles are more relaxed. Eats very well, started to chew her food, tongue is less stiff, swallows water without choking. Giulia has a severely subluxated left hip, for which we are awaiting for her operation, prior to this treatment, she would spend her days crying due to the fact that there wasn't a position for which she could sit or lye comfortably, now she is less painful and sleeps a lot better.
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May 18 to May 30th 1998
OBSERVATIONS OF HBOT FOR Mathieu and Michel Nadeau by mother Claudine
4 year old twins:
Mathieu has spastic diplegia cerebral palsy.
Michel has spastic quadraplegia cerebral palsy
All sessions "dives" were for a duration of one hour. Usually at 1.75 atmosphere or equal to 24 feet below sea level.
Monday May 18th sessions 1 & 2
The first session was to 8 feet at 10:00am for 1 hour. The second was to 16 feet at 2:00pm.
Observations:
Mathieu.---I cannot be 100% sure but I think Matt may have a little more endurance walking.
Michel---we see that he can get to positions faster than he could before. I do believe his legs seem less spastic. Can this be??
Tuesday May 19th sessions 3 & 4
The first session was to 16 feet at 10:00am. The second session was to 24 feet at 2:00pm.
Both boys cried for a bit on descent, Matt continued to be a challenge but Michel was well behaved for the duration of both sessions.
Observations:
Mathieu---seems to be falling a little less often and is more stable on his feet.
Michel---he is definitely getting to positions much faster, he did a "bridge" both hands flat on the ground and quite literally jumped to almost flat feet with his bottom up in the air! As far as the spasticity, I'm not sure yet. At times there seems to be a difference but it doesn't stay.
Wednesday May 20th sessions 5 & 6
The first session 16 feet at 10:00am. The second session 24 feet.
Matt cried a little during the morning session. Both boys cried on descent during the second dive but then fell asleep for the remainder of the session.
Observations:
Mathieu---he continues to steady himself in standing and walking.
Michel---today he gave me a "high 5!" with the left hand with some power behind it! His left hand also seems to be not so tight, he continues to be quick with his movements and talks nonstop with more power in his voice. He is also asking more questions.
Thursday May 21st sessions 7 & 8 Both sessions 1 .75atm.
We are all settling into "life in the hyperbaric chamber" quite nicely, the boys sometimes cry on descents but usually stop once we level off. We amuse ourselves with"playdough" , puppets and coloring.
Observations;
Mathieu---When I picked Matt up to exit the chamber this afternoon he felt very different, his legs were more relaxed, it was a noticeable difference that I immediately reacted to!
Michel---During the second session,welayed primarily with his LEFT hand. He rolled the playdough using both hands and while looking at a magazine he used his left hand to point to and touch the pictures.
Friday May 22nd, sessions 9 & 10
Both dives were to 24 feet.
Observations:
Mathieu--.his legs are definitely less spastic at the hip joints, he is still toe walking and hyperextending his knees. I feel we need to use his long leg braces to correct this pattern. However there is not much time with two sessions per day and all the traveling time back and fourth from our "home" to the clinic.
Michel---shows no change since yesterday and hasn't used his left hand again in the same way. He does continue to improve his voice and power of it.
Saturday May 23rd. session 11
Only one dive today, it was to 24 feet
Matt fussed a little but soon calmed down within 10 -15 minutes.
Observations:
Mathieu--Nothing new to comment on.
Michel--continues to practice his bridge, and other quick movements.
Sunday May 24th,
No dives today.
Michel got to a sitting position all by himself!!! Finally we can fill in the blank space in his baby book.
This is a special day, we have waited a very long time for this moment. He sat well enough to lift his hands off the ground and still held his balance.
Monday May 25th, sessions 12 & 13
Both sessions were to 24 feet at 10:00 am and 12:00 noon. Leaving 45 minutes between dives.
Observations:
Mathieu--his lower legs are now decreasing in spasticity, while massaging him the difference is veiy noticeable.
Michel--is so quick with general movements, he loves to practice "W- sitting" and lifting his hands up in the air over his head. He is trying hard to crawl, but not yet there.
Tuesday May 26th, sessions 14 & 15
Both sessions were to 24 feet at 10:00am and 2:00pm.
Observations:
Mathieu--spasticity continues to reduce, in walking his heels are coming down a bit and knees are not always hyperextending. He is falling much less, in fact very seldom in comparison to before.
Michel--I feel the spasticity is reducing globally and is stable. Michel's self-esteem is greatly improving due to his increased mobility, he is so proud of himself. He is so cute to watch, every time he gets to his knees and lifts his hands in the air he calls for Grandma's video camera and for me to take his picture!
Wednesday May 27th, sessions 16 & 17
The morning session was to only 16 feet, I was not happy but had no choice other that to not dive at all. The afternoon session was to 24 feet.
Observations:
Mathieu--During the massage tonight an increased range was very definite, Matt was very "loose" and again less spastic.
Michel-Also during his massage I notice an increase in range and less spasticity. He is much easier to manipulate doing physio and in dressing.
Thursday May 28th, sessions 18 & 19
Both sessions were to 24 feet.
Observations:
Mathieu: massaging his legs this evening I was able to get even better extension than last night in the hip and groin area. His legs move like" butter" almost feeling disconnected.
Michel: During massage tonight I was able to bring his legs out (knees bent) more than I ever have before. Manipulation of his legs and arms during massage is much easier.
Friday May 29th, sessions 20 & 21
Both sessions were to 24 feet.
Observations:
Mathieu--No change
Michel: continues to be a little less tight in arms and legs, a definite reduction in over spasticity and increased mobility.
Saturday May 30th, session 22
Our last session, 24 feet at 8:00am
Observations: none
As we were packing-up to leave Bedford and drive three hours down to the south, East Grinstead, we did not do any physio or massage today.
Monday we start a six week course of Amino Acids.
July 22nd, 1998
It has been several weeks since our HBO therapy, the noticed effects are as follows,
Mathieu - has a definite decrease in overall spasticity, even in his arms where there had never been any mention of spasticity.
His heals are down about 80 % of the time and his knees are not hyperextending as much as before, even posture is improving and his legs are noticeably looser, less spastic. He has increased balance and coordination, falls seldom, that was not the case before HBO. He hasn't used his short or long leg braces since the commencement of HBO. For the first time in his young life he is able to play outdoors with his older brother and little friends. He is still a little unstable and has to try real hard to keep up with his peers, but he can do it!
Michel - has an overall reduction of spasticity even in the facial muscles and improvement in general tone. He can get to sitting position on his own for short periods, he can even manipulate objects with both hands while sidesitting or W-sitting. He can do a bridge, both hands flat on the floor, feet on the floor and bottom up in the air. He has enough balance to sit at the kitchen table unaided and eat finger foods. He could not do this before HBO. His legs although they still cross, its not as much as before and he has enough control to uncross them himself when asked. His speech has improved, its less labored, he now speaks in complete sentences and asks more questions. We see how even the thought process has changed, he comments on his surroundings and talks about what we "did" and people we have seem. He is also persistent with his requests.
Fine motor skill and manipulation of objects has improved.
September 10
Regression:
The boys movements are not as "quick" as they were while we were doing the HBO and there seems to be that about 10%-15% of the spasticity has returned. I believe it is essential to continue HBO in order for improvement to continue and maintain results gained. I believe that treatment blocks should be followed about every two months at least in the beginning until progeress is no longer evident.
We as parents are very pleased with the gains our children have experienced due to hyperbaric treatments, we wish to continue HBO until such a time that no progress is evident.
Claudine Nadeau
248 Shamrock,
November 1996 I had my twin boys December 6,1996 at 28 weeks. Peter was 1 pound 15 ounces and J J was 2 pounds 10 ounces. By two years old, Peter was diagnosed with Cerebral Palsy. At 2-1/2 years old, Peter was unable to sit unsupported, not crawling and could only say the first syllable of words like uma' for mommy and 'Ba' for Barney. It was at 2-1/2 years old, when we took Peter to Canada for Hyberbaric Oxygen Treatments (HBOT). He completed his first 40 treatments there.
Testimonial
Three years ago our son, Sidath, suffered a devastating attack of strep meningitis. It was initially misdiagnosed as the flu and 24 hours later when the diagnosis of meningitis was made Sidath had already slipped into a coma. He remained in a semi comatose state for the next six months and suffered every side effect of the horrible infection. He needed VP shunts to clear the fluid from his brain and a g tube to nourish him. Unfortunately the shunts either malfunctioned or got infected making it necessary for him to have 10 shunt revisions (brain surgeries) within a six month period. During one particularly bad episode of a malfunctioning shunt he had a subdural hygroma on the right which caused paralysis to his left side.
Our charming and happy 3 year old Sidath walked into the hospital and literally lost everything except his will to live. After a six month stay in the hospital we finally took him home as helpless as a newborn with an intractable seizure disorder. He couldn't hold his head up, or track with his eyes. The only sound he could make was a high pitched scream.
We tried everything in our power to help him regain all he lost. While Sidath struggled to hold his head up or drink with a straw, we learnt all the terminology associated with our special child. We spent countless hours searching for and trying out different approaches to treat his problems. He swam with dolphins in Florida, had a feldenkris practitioner, an Osteopath, a Qi Gong practitioner, had EEG bio feedback, rode horses while continuing the conventional occupational, physical and speech therapies. Then one day we discovered hyperbaric oxygen therapy.
We did some research and were pleased with what we found. The next big hurdle was finding a facility that would treat Sidath. We couldn't persuade anyone to treat him ...... cerebral palsy was not on "the list" published by the AMA. Quite by chance we discovered the clinic in Santa Monica. Our meeting with Dr. Cassidy and Trish Planck was best thing that happened to Sidath in his rehabilitation (Other than the progress he has made!!)
After 40 sessions of HBOT Sidath could sit by himself when placed in a sitting position for over half an hour. He started laughing at jokes and interacting with strangers. He learned to feed himself with a fork, hold a pencil or crayon and brush his teeth. He started making a lot of sounds and resorted to using word approximations rather than screaming. His left hand which used to lag behind remained hypersensitive but he would allow us to place it on the table while he ate or played with play dough.
He continued to make gains for another 6-8 months. We resumed HBOT in December of '99. Another 50 sessions later he is a different child. He can raise his left hand over his head and he can shake it on command. Sidath can take 30-40 steps with assistance and is happy to bear weight on his feet. He has nearly 70 words (some are approximations and understood only within the context ). Best of all his sense of humor is back. He teases his therapists by calling them "Cruella" and his sister "meanie" and loves to say "mann~na" to Mike at the clinic. Sidath exercises his will now and whenever he is asked to finish something answers "laler" (later). He has resumed toilet training and in doing well. When we started HBOT in March of 98 Sidath was on a huge dose of an anti epileptic drug. Since then we have been able to successfully wean him to 5% of his original dose. To say that we are thankful for the blessings brought through HBOT to Sidath's life is an understatement. We believe that we are now in the process of reclaiming our son a little at a time. HBOT alone may not have been the answer ......... but HBOT gave him the "jump start" he needed (or healing within) to maximize the effects of all the other therapies. Our hope is to complete 200 HBOT sessions within the next year with the prayer that by then Sidath will only need it as a preventative rather than therapeutic aide.
Harin and Sherene Hulugalle
Date: Tue, 15 Oct 2002 14:36:23 -0400
From: "rose manning"
Date: Tue, 15 Oct 2002 12:56:00 -0700 (PDT) From: THOMAS GOUGH
To Whom It May Concern,
From: "Roger Smith"
From: "Roger Smith"
Severe Combined Immune Deficiency (SCID-Bubble Boy Syndrome) & Hyperbaric Oxygen Therapy
From: Lisa Deister [mailto:ldeister@kc.rr.com]
I have been a lurker on this board for quite some time. I hope other parents will read this post and not give up on HBOT. I know I sure have wanted to a few times. Fortunately, I have seen what it can do and am now on a mission!
Our daughter (3 Cerebral Palsy spastic diplegic, born at 27 weeks) has had 102 treatments.
Katlyns case summary and Improvements 2/11/02
Break down of Katy's Miracles:
December 12, 2002.
Lisa Deister
I hope other parents will read this post and not give up on HBOT. I know I sure have wanted to a few times. Fortunately, I have seen what it can do and am now on a mission!
Our daughter (3 CP spastic diplegic, born at 27 weeks) has had 102 treatments.Feb 2001 - The first 40 were done at 1.5 twice a day. We saw tremendous!!! improvement in her spasticity the first 2 weeks. Then she started regressing. By the time we finished the 40, she was just a step above where we started a month earlier. July 2001 - The next 12 treatments were also 1.5, saw minimal results.
Sept 2001 - The next 23 treatments were at 1.75 once a day, saw nothing.
Date: Sat, 18 May 2002 20:25:51 -0400
I heard from my neighbor about a therapy being used for children with Cerebral Palsy, Hyperbaric oxygen therapy. It supposedly forced oxygen back into the areas of the brain that had been deprived of oxygen. It was best used as close to the initial injury as possible. I began my research over the Internet. I found the Lufkin Hyperbaric Center by their web page.
When we arrived in Texas, we saw Dr. Cargill and immediately started the treatments. By the end of the first week, we were already seeing some changes. Matty started taking food by mouth and drinking milk from a bottle. Previously, he was fed only through the G-tube in his stomach. Then in the middle of the second week, he began holding his head up on his own. The spasms had also completely stopped. His tone began improving daily. With the help of the physical therapist, Brenda Conley, we began seeing daily improvements in Matty’s motor skills and alertness. By the time we left Texas, Matty was making good eye contact, was totally off his formula and taking all food and drink by mouth, and was able to sit with support and fully control his head. He can now roll all over the floor, laugh when something tickles him and smile and melt my Mom’s heart My only regret now is that we are not closer and could not continue the treatments. However, once the money is raised for another round of treatments, we most certainly will he back! Thank you to the Lufkin Hyperbaric Center for such a positive healing experience.
Sincerely, Amy C. G. Matty G. Olive Branch, Mississippi, 2 years old, Tuberous Sclerosis - 80 treatments
Sandra, Centerville, Texas, 5 years old, Cerebral Palsy, Cortical Blindness, Seizures, 120 treatments
From: "Ellen"
Darien, I can't answer your question per se, as we did things in reverse. My daughter had HBOT 3 years ago (ran out of money, can't go back for a while) and we saw tremendous improvement immediately. After having had 76 treatments, her frequency of seizures reduced by 50%, as well as other improvements such as better eye tracking, improved memory, and no more Parkinson's-like syndrome.
Now this past June she started cell salts, also with Alex Sutton and the improvements have been tremendous! Although we had tried many different therapies, nothing has helped in her healing like HBOTand cell salts. For those who do not know, these Biochemic Cell Salts were discovered by Wilhem Schuessler, a German homeopath from the 1800s. These cell salts, are titurated in a homeopathic manner, so that the body can readily absorb these microdoses of minerals. They must be taken over time, and the longer the mineral deficiency, the longer it will take to replenish. We saw some improvements within the first week or two of cell salts. For the first time in over 4 years, she is no longer afraid to go to sleep at night. Before the cell salts, as soon as she would go to bed she would start "twitching" and if left alone would go into a tonic clonic seziure. As a consequence, she was afraid to fall asleep (and sleep deprivation leads to more seizures). It had gotten so bad that we strung a series of bells on her bed. Now she is sleeping restfully. She has also started growing again. For the past several years, she was not growing and went from 95% for growth down to 5% for growth. In the past 6 months she started growing and is now at 25% of others her age. After a few months on cell salts, we saw a slight regression as she hit a plateau and then she began to further improve as the healing was working deeper. I believe absolutely that cell salts is an excellent therapy in addition to the HBOT.
As far as looking for an HBOT center, unless you find one very close (less than an hour drive), I would look for a place to stay near the center. If you're doing 2 treatments a day, even if you’re close by, it takes up most of your day. My daughter was very hungry (HBOT boosts the metabolism) so if we weren't in the chamber I was feeding her. In between that time I was doing exercises with her. I found that it really consumed the entire day and if you add driving into the mix, its really difficult. The 2 sessions must be 4 hours apart each day if you're doing 2 in a day. If this means that you should be away from home, I would look for a setting that is relaxing to you because you will be working hard. Also, if you go into the chamber with your child (I did), you may find this extremely fatiguing (in which case Dr. Harch would tell you not to go in anymore!). I've used both a mono-chamber and a multi chamber. The mono chamber sort of reminded me of a coffin and there was not room to move around and my back began to hurt, but I could see everything that was going on outside. The multi chamber requires a hood on your child. Mine didn't like this, but was okay as long as we started her movie right away. There was more room to move around, so this as more comfortable, but I could not see out as well (only a tiny window in a bad position) so this kind of bothered me. I was able to look at a book though, instead of watching the same Disney movies over and over again. Good luck! Ellen
Date: Mon, 20 Jan 2003 14:15:56 -0600
Subject: Treatment helps with hugs
http://ww2.kcchronicle.com/KCC/news/276895078629851.bsp
By JANNA SMALLWOOD
Kane County Chronicle
MAPLE PARK Before his hyperbaric oxygen treatments, Max Capes was not able to hug his mother, Carrie. When that first hug came, it was part of a gradual transformation that stunned and delighted friends and family. The hug was a sign that the messages from Max's brain were working to move his limbs in a way previously not possible, Carrie Capes said. "This poor little guy has got the biggest spirit in the world, and it's trapped in this body," she said. Max, 2, has developmental delays because of an undiagnosed metabolic disorder. His mother learned about treatments that could improve her son's ataxia and weak motor skills and balance during her involvement in Mothers United for Moral Support. Now that she and her husband, Gene, have seen the dramatic improvements in their son's condition, they and others have worked to bring the treatment to Tri-Cities families. A mobile hyperbaric unit will be housed in the Elburn Lions Club from Feb. 27 to April 8. The unit will be brought back to the area every six months. Eight patients are needed to sign up for the unit to be brought to Elburn. Hyperbaric oxygen therapy is intermittent, high-dose oxygen inhalation therapy, according to HBOT Online. Inside a hyperbaric oxygen
chamber, healing oxygen is pushed into cells from a pressurized oxygen hood. For Max's condition, 40 of the 1 1/2-hour treatments are needed every six months. Hyperbaric treatments are used to treat a variety of conditions, including neurological disorders such as cerebral palsy, autism and brain injuries, as well as nonhealing wounds and burns. The treatments also are used to treat patients with a dead or idling section of the brain resulting from a prolonged lack of oxygen, such as from a near-drowning, Carrie said. She said she thinks of the treatments as his "nervous system getting busy," in which previously inactive parts of her son's nervous system have been reawakened and invigorated. The treatments are expensive
and not readily available. The nearest unit is in Joliet, but it worked better for Carrie to take her son to a Wisconsin facility. That required moving there for five weeks. Treatments in the mobile unit cost $100 each. At other facilities treatments range from $600 to $1,000, she said. Hyperbaric treatments usually are not covered by insurance. Some families have gone as far as Canada or Europe for the treatments, where they cost closer to $30 each, she said. "It's cheaper overseas because more people are doing it there," she said. When Carrie and Max returned from Wisconsin at the end of October, Gene and the family's relatives were amazed with Max's progress. Max started to show evidence of motor planning, whereas
before, it was difficult for him to physically respond. He finally was able to walk with the help of a walker. He climbed down the stairs by himself, without the frustration and prompting it used to take, and he climbed onto and off of a spring horse by himself. He now can drink out of a regular cup, when he had difficulty drinking out of a baby cup before. And he shows better cognitive response time. "I hesitate to say it's a miracle, but it's a miracle to us," Carrie said. "It's taken the edge off of his challenges." The hyperbaric chamber, supplied by American Hyperbarics, will be brought to the Elburn Lions Club in February. The McCahn company will donate a generator to supply the power. Those who sign up before Jan. 29 will receive $10 off each treatment, Carrie said. To sign up or for information, call the family at (815) 827-4902 or e-mail them at capesfamily@tbcnet.com. Information about hyperbaric treatments is available at www.hbot.com. The family will host a potluck lunch for interested parents at 1 p.m. Jan. 28. Please call to reserve a spot.
Date: Tue, 29 Oct 2002 19:18:45 -0000 From: "Deena Ohrt Ryan"
Date: Sat, 7 Sep 2002 22:57:48 -0400
Matt, As a parent who has a child with CP and whose child had 62 HBO treatments so far, my Katie has not had the jump-out-at-your-face improvements with HBO, such as talking, walking or even sitting up on her own. However, after the treatments she was looser, louder with her sounds, ate and slept better, and
appeared more aware of things going on around her. This noticed by me and family members at home who were not told of the improvements, but recognized them...that was our own test so to speak. Even though she continues not to talk, walk, or sit by herself, she knows the direction she is traveling in a car as evidenced by turning a certain way leads to Walmart, and another way not, crying when not stopping at church on the way somewhere else because she had such a wonderful time at Vacation Bible School this summer. By the way, when the car turns in the direction of Walmart, the screams and laughing begin!!! She also knows directions from landmarks as evidenced by strolling. She is now playing some games with us, simple little game playing but that is a stage itself.and as a parent, I will appreciate these gains, as simple as they may seem to you or others, and I thank God every day for these gains. And some of these gains will not have a produced by HBO tag on them, but the improvements were there.
And for the magical CURE for cp and other brain injuries, the stem cell therapy is at least 10 years away, and if you think that they will be offering this readily to our little babies think again. Much will probably
be done on the adult level first with spill over later for the little ones. By that time our little ones will be teenagers. Of course I hope and pray that we do not have to wait that long. And I have also considered going to Europe if and when they should start providing this to little ones if they beat us in the time line.
And Matt, you may not ever realize how lucky your daughter and your family are that you were able to provide her with treatments at so young an age, but I hope you listen to Ed's advice and do a lot of research, then hopefully you will. Sincerely, Betsy A. Tyler RN BSN CCRN MOMMIE
Date: Sun, 8 Sep 2002 05:57:09 -0700 (PDT) From: Sue DuPart
My son, Tyrus., was diagnosed at birth with Down's Syndrome at the Toledo Hospital where he was born. He had an endocardial cushion defect, which required surgery, and it took four months to get him up to weight for the procedure. It was really frightening to watch him breathe, and he was always blue. I had separated from my husband and was working full time plus two part time jobs to make ends meet. My daughter, Celleste, was only 2 yrs old and circumstances were very difficult for a long time. I truly believe that sometimes God sends us into great challenges to prove His abundant love and grace. It didn't always seem like it, but when I look back I see many miles traveled with just one set of footprints in the sand. He has carried us through unbelievable odds and made open doors out of brick walls.
In October of '99 we went to the University of Michigan hospital in Ann Arbor and Dr. Edward Bove' performed successful and quick surgery on a very tiny baby. I was ecstatic to see my four-month-old son smiling at me with pink flesh and instant energy I never knew existed in his tired little body. The staff at the hospital was compassionate, caring, and led us step by step through everything. Any employee walking down a hall would make sure you were being taken care of in some way or another. It was a big help in a stressful time. Ty was still severely under weight and required tube feedings, but progressed beautifully day by day.
Things began to settle down a bit until about a year ago when Ty's brand new baby teeth started falling out, completely intact, without impact. When he lost eight teeth in a matter of a couple of months, we knew something had to be wrong. He had been on solid food for quite some time and vomiting after nearly every meal because, as we later realized, he couldn't chew it anymore. At one point, he had only two teeth left!! We went to the dental clinic at MCO, and Ty was seen by Dr. Jack Whittaker. He diagnosed Ty with a rare endocrine disorder called Hypophosphatasia. I have always considered myself the epitome ofMurphis Law, and it is reiterated daily! I did as much research as I could before seeing the top-notch endocrynologist in this area, Dr. James Homer. To my utter disappointment, he had less information than I did. I then contacted Shriner's because it is also classified as a metabolic bone disorder. They were unable to help me because it has no medication or treatment that has proven effective. I would really like to talk to parents or professionals who can fill me in on this disorder and let me know of any new research or even just what to expect.
Tyrus is now a very high-functioning 3yr old. He has a weak immune system, but his health is good otherwise. He only speaks one audible word ("up!'} but effectively signs a thirty-word vocabulary. You can often hear bits and pieces of real words in his constant baby babble, but he always leaves you wondering if you really heard it. He is potty training and causing all the normal toddler trouble one would expect. There are a number of details omitted in my little story but I would be happy to share them with any parent or professional interested.
As a side note, I would like to address the fact that the standard of treatment for children with Medicaid or other state-funded insurances is deplorable compared to that of children with commercial insurance. This does not hold true for all providers, but certainly many of them. I have learned to be a major advocate for my son because of this. He had pneumonia, and St. Vincent's hospital determined that he was well enough to go home even though he was obviously dehydrating, running a high temperature, and wheezing. (Keep in mind he was still considered a fragile child due to heart repair and a low immune system.) We returned in the wee hours of the morning after he had gotten worse and it took three hours, 15 holes, and half a shaved head to get an IV in my baby. I was one honked off mom. I am employed in a doctor's office and can tell you first hand that hospital administration will deny inpatient admittance, insisting there are no beds available for Medicaid recipients and, just a phone call later, have plenty of room for private payor someone with good commercial insurance. If you question your quality of care, document everything at your visit and make a Physician or nurse sign off on it. You have to sign paperwork any time you go in, why not make them accountable too? I am ready and willing to offer my services for those of you who are having a difficult time with getting your medical bills paid by insurance. I am most familiar with procedures in my immediate geographical area, however, I know the common tricks played by over 2,500 insurance companies and would be glad to fill anyone in who wants to know them
I recently met a 2 year old boy with a very serious seizure disorder. He was receiving HBOT at the same time as my son. As I understand it, his EEG indicated that he has a seizure spike every 1.5 seconds and his mother indicates that he had actual visible seizures regularly. Anyway, she and I sort of bonded during the 40 sessions of HBOT so I was able to observe her son closely. He showed visible changes during his first session. He has some sensory issues related to the seizures. It generally took weeks if not months to get him to touch anything new with his hands, such as a toy. Also, his hands were often fisted. During the first session, he opened his hands and began touching his hood, something his mother said he would never have done before. After several sessions, he became far more vocal and began saying ma ma and bye bye. Throughout the course of treatment, he became much more alert and had a significant overall decrease in seizures. During treatment, he did have a couple serious seizures but, as I understand it, children with seizure disorders do sometimes have a couple of very big seizures during treatment, followed by an overall decrease or total disappearance of the seizures. I'm sure someone else on this list can explain why that happens. Last time I spoke to his mother, I believe she said they had weaned him off at least one of his medications completely and his most recent EEG was the best he'd ever had. His parents are very pleased and plan to continue with the treatments.
You are right, I do not think HBOT works to the same degree for everyone. However, the children I met while my son was being treated had very positive results. Also, my research indicates that the sooner a child receives treatment, the better the outcome, generally. That means that you are absolutely doing the right thing in seeking treatment for your young son now. I wish you luck in finding a treatment facility for your son and in achieving positive results. Lynn ,
From: "dksierra"
In a message dated 7/26/03 6:08:47 PM Pacific Daylight Time, mmeshke@vbe.com
Hi, This statement is Bull as far as I am concerned. I am 41 years old, have mild spastic Diplegia CP, stopped doing conventional PT at the age of 15, thanks to Rolfing which is a deep tissue massage that releases the fascia tissues that makes us tight. I started therapeutic horseback riding at the age of 34. I was walking in the typical CP crouched gait. Now, with going horseback riding 4 days a week, doing Eureca Institute's therapy twice, going to a chiropractor, a Rolfer on a fairly regular basis, having done some EEG biofeedback and working with NACD among other things as well as having just finished 60 hours of HBOT, I am continuing to improve, no longer walk in a typical CP crouched position, straightening up more and more over time, loosening up here and there and still gaining increased ROM over time, I say that the brain is ALWAYS plastic if you let it be and continue to work on it.
Vicki;
I did go in the chamber with Kurtis. Other than a pretty high boredom factor we did not have any problems or discomfort. Kurtis is a very motivated, active, happy little boy. We did see some changes in personality, but for the better. Yes, he is "crankier" than before. I think this is a good thing. It indicates to me that he is more aware of himself and his ability to interact and communicate. Prior to HBOT Kurtis did not cry or laugh. Now he is doing both. He cries when he is frustrated that he cannot stand up, or once standing can't get down. He laughs when I squirt him with water in the bathtub, when he discovered his belly button, his knee, my elbow. His ability to communicate, although still non-verbal, has increased tremendously. We noticed a reduction in spasticity from the first dive. It has remained. The cognitive really started to be noticable between 20 and 30 dives. It continues to amaze us on a daily basis. People who have not seen Kurtis for a few weeks
or months, all comment on the changes they see.
Sit back, relax, watch and wait. Good things will come in time.
To All,
I have been wanting to post this for about 2 weeks now but I keep forgetting, or remembering when I do not have any time to write.
Cole has finished about 31 treatments of HBOT (I think that is the amount I would have to double check) As I have posted before we started out at 5 x per week, went to 3x then 2x then 1x and now he is down to 1x every 2 weeks. I think I am going to be staying at this for quite a while. We came up with this scheldule through kinesiology -muscle testing etc. Here is his progress to date: (Cole's main problems over all are: disorganization, being able to follow directions well, major dyslexia, ADD, vestibular sensitivity, drooling, possible right/left side dominance problems, poor fine motor skills etc.)
These are the improvements we have seen since starting HBOT in July:
Near drowning accident on July 23, 2003.
"Cathy Williamson"
Hi, I started HBOT with my daughter when she was 6. Now she is 11 and when we do HBOT now she still starts doing new things. To count she has done 330 treatments. Even when I just do maintenance dives she seems to perk up and gets rejuvenated. The older children I have treated and observed over the years are pretty amazing. A 14 year old who received her first 40 over the summer has been doing great in school, improvements including more awareness, willing to learn and a much better talking. Her psychologist, therapists and everyone around her noticed right away and asked what changed over the summer (of course meaning what medications did you put her on). She will be back over the Christmas break for more treatments. I have a 15 year old now making the same progress starting about his 25th dive, will be finished tomorrow with his 40th. Others I have met, and who talk know when it is time for them to get more treatments, just makes them feel better, and depending on the certain ailments they have such as spacticity or hypotonia they know it is helping them. I hope this helps, it may take a little longer with children who are older yet at the same time results can be pretty quick and amazing. Regards, Elaine www.thejennyrosecenter.com
Feb 27, 2005
What I noticed concerning my son and other children with neurological disorders who received HBOT was that (1) eye tracking improved (2) spasticity decreased (3) drooling stopped (4) range of motion improved (5) speech improved (6) they acquired the ability to open and close their eyes (7) began moving ankles that had never moved before (8) memory improved (9) children with low-tone in their trunk were able to sit up better (10) began interacting with others.
(Our son received his first obvious improvement at 28 dives).
Leanne Roe, 6308 Magnolia Ave,. Everett, WA 98203 425-290-1837Email: leanneroe@comcast.net
Quality of Life Changes-
> I was wondering if anyone here has used HBOT for > a BIRTH-RELATED closed head brain injury? I would be very interested
> in hearing about the results.
From: Susan Kelne [mailto:skelne@planetkc.com]
--- In NeuroHBOT@yahoogroups.com, "Terry & Dianna Krumrei"
From: Mandy
> To: NeuroHBOT@yahoogroups.com
Mandy and Diana, this is so true. I remember the first time we did HBOT, I wasn't seeing the significant improvements in my son that
other children being treated at the same time were experiencing. Our CHT kept telling me to give it time, give it time. He was so
right. My son's biggest advancement was about 6 weeks POST- treatment when he was finally able to pull it all together - he went
from being unable to coordinate enough to use a gait trainer one day to being able to cruise the entire house the next day. It was
literally an overnight thing - actually, it wasn't an overnight thing, I am sure, but it sure seemed like it. Lynn dubblmum
--- In NeuroHBOT@yahoogroups.com, "Terry & Dianna Krumrei"
Interesing you mentioned Malaysia. I know a Dr. Ebrihim over there and have set up a web site to show him giving HBO2. If one picture s worth a thousand words then a video is worth volumes. Here is Dr. Ebrahim's picture - http://www.oxytank.com/maung.htm
--- In NeuroHBOT@yahoogroups.com, Fezia Tyebally
: Date: 23:51:02 16.06.2005 Nancy
Date: Sun, 05 Jun 2005 02:42:47 -0000
stephrumph - are you still around?
How's that for a delayed response? Sorry. After the first round of 40 our daughter's smile returned - along with much more awareness, expressiveness, improved vision, and head control. After the second set (33 treatments) we are seeing her moving her legs on her own now, more improvement on her vision, awareness & expressiveness. She had a 5 hour seizure March 28, 2004. Before that was developmentally almost on target - talking, walking - about 6 months behind due to many hospitalizations and lots of meds. Sandy
Interestingly, there is the case of Mathieu and Michel Nadeau. These are the twins that were among the first treated in Canada. Observations of their progress lead to the development of three separate research programs 7 year ago and the commitment of 2.5 million dollars to research the use of hyperbaric oxygen therapy in the treatment of individuals with neurological injury.
Initial findings
Michel
Spastic Quadraplelegic CP- Non verbal at 4 years of age, wheel chair bound, unable to transfer, unable to feed himself, unable to toilet himself, legally blind, restricted visual field. Severe spasticity Immediately following HBO (six weeks post). Able to speak in sentences. able to feed himself for the first time, Spasticity relieved. Cogniti
Pincourt, Quebec
J7V3W6
(514)453-2224
snowfive@total.net
The month following treatment, Peter began talking much more. He began telling me what he wanted, like 'more juice, mommy.' He also began singing the "ABC" song and counting to 10. Peter became more interested in toys and books. He began holding his own sippy-cup and began sitting with his back straighter. He began eating better and taking in fluids much easier. We were very encouraged. We knew we could not stop at 40 treatments.
Fortunately, we found a wonderful chamber here in Phoenix and have just completed 40 more HBO treatments. Since these treatments, Peter continues to improve verbally and will try to say any word you ask him to. He now tries to pull himself to a wanted toy, which he has never done nor has he even tried to do. He plays games with me and is more interactive with people that he doesn't even know. His eyes continue to get brighter and more alert.
Although he does not sit independently on the floor, he is sitting in some chairs and can sit in a high chair, which has made eating out as a family much easier. He has also become aware of his movements and when he begins to fall, he has said, "Owhoa, that's scary-O".
I am seeing that his reasoning seems to be improving; he has begun lifting his foot for a step when in the standing position. Peter's general daily care has totally changed. Having him talk to me to tell me what his needs are, has changed my perspective and makes my work to care for his needs more fun.
Watching Peter make improvements every day has brought much joy to me. I feel like I have finally found a therapy that, coupled with his other therapies, has begun to make a noticeable difference. Peter has been able to join his twin brother and older twin sisters in some fun interactive play, which of course brings joy to them and to me. I plan to continue to give Peter more treatments for as long as we can financially afford them.
I would encourage anyone with a brain injury to try HBOT.
GY, Arizona
Testimonial
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Cole is two years old and has gorgeous green eyes and curly blond hair and a smile that could melt the Polar Ice Caps. He knows several words in sign language, can sign and identify most colors and shapes, can identify all and say most of the letters of the alphabet and is an Olympic gold medal cupboard door slammer. Cole also has spastic diplegia cerebral palsy. He cannot sit unsupported unless he puts his hands on his knees and cannot crawl, stand or walk. If you help him to a standing position, his legs twist inward so much that the outside edges of his feet are up in the air.
During the last year before beginning hyperbaric oxygen therapy treatments, Cole's speech was very limited. He was stuck on "mama, dada, num-num, book, yeah and no". I knew this was odd because this is a very bright child who communicated extremely well by pointing and signing. If you asked him to repeat a word all he'd say was "bah", but he'd hold his hand up to everyone's lips to see how they were saying it, and you could see his mouth working. He just could not figure out how to get the words from his brain to his mouth.
Cole has now had 40 HBOT treatments. Around the 20th treatment, Cole was suddenly able to easily repeat the words "in" and "out" one night. I was so surprised! He just blurted them right out after I had said them...and immediately knew how to use them. Suddenly each day brought at least two new words, for which he had instant comprehension. One night I taught him "up" and "down". The next morning I came around the corner as he sat in his highchair with a blueberry in each hand. He was lifting and lowering them repeating "up!" "down!". He'd known all along what these words were, he just couldn't figure out how to say them. I called Paul Harch, M.D. to consult with him about my son's case and explained how he seemed to be trying to say the words but nothing would come out. He chuckled and said, "That's classic Broca's Aphasia! We see it in our stroke patients all the time and we usually see the changes right around the 20th treatment" In addition to the whopping increase in vocabulary (50 words at last count) Cole's appetite increased, allowing him to gain a pound and grow an inch in just under three months (he'd barely grown in the last four). Lastly, we did SPECT scans before and after HBOT. The second scan showed "there were fairly large areas of the orbito-frontal and lateral frontal lobes that showed increased distribution on the order of anywhere from 15 to greater than 50%".
We'd love to continue HBOT but must wait until funding is in place. The regional center has turned down our request (even with the SPECTS, a letter of necessity from the pediatrician and the obvious clinical improvements). We will appeal so that all children, including our son, can get this treatment if they need it but have been told that as long as HBOT is considered experimental we have little chance of gaining funding.
Meanwhile, Cole continues to delight and surprise us daily. We'll continue to fight so that he can get the best of care.
My son Robert and I are member to your MUMS group and we also get the newsletters. I have an in home Hyperbaric chamber here for Robert. I want you to know that before we got this chamber everyone had given up on Robert he would not do any thing at all. He would not look at you if you asked him to let alone follow something in front of his face. I have not heard him say, “mom” for over 2 years. This chamber has been a blessing to us. Robert is now following objects and blinking when I ask him things. He is trying to talk, and he will even follow objects in front of his eyes and look at people when they talk to him. I have a tape recording of him trying to talk and “mom” comes out very clearly. Robert follows small commands now and will even kiss his little girl, Mandy Lyn. This chamber is from Oxy Health and has helped my son 100%. Now when I take Robert out to go do things he does not get all upset. He enjoys going places and now can he look around at people. Before Robert would get all upset and so I would have to bring him right back home. He also does very well in the chamber it does not bother him at all. When he first started diving he would only sleep but now he stays awake through the whole dive and yawns very well while in the chamber. We have Mr. Samir Patel to thank for this chamber. I feel that the chamber has my son on the road to doing much more and as of right now today will be Robert's 38th dive. I do have every thing on paper of each dive he has done and how he did after the dives. At the bottom of this message is Robert's webpage and there are pictures on the site of Robert now. The one that is the best is the one of him in his wheel chair with his legs bent. I feel that many people need to no that these in home chamber do heal and that they will help. Mr. Patel is a well known name in our house he gave me hope and I did get to hear my son say mom again. I praise this man for every thing he has done for my son.
Thank you Tracy Spracklen, Robert's mom. Robert's webpage:www.robbyschiffernstbi.com
Hi Maria, I wish to thank you for sending the 'Bill's Journey' article to me. I have previously communicated with Allene Creacy by E-mail and because I suffered very severe hemorrhagic stroke about the same time as Bill Creacy I was most interested to know about his incredible journey of recovery after his stroke through hyperbaric therapy. It has been an inspiration to me because here in Canada hyperbaric therapy is not an approved procedure for stroke and as a result Government health insurance is no good. Additionally, very few private insurance companies offer this coverage for stroke survivors and the medical profession is also very skeptical of hyperbaric treatment for stroke. When they are asked why none of them have more specific reasons why not...they simply say it won't work for stroke and expect all and sundry to accept this 'explanation' without asking whether they have reached this conclusion empirically or simply because they have said so. I tried it because Allene and her friend Lisa Deister [who both have loved ones who are brain injured] urged me to do so. I have taken only 25 dives at the time of writing but I can tell you that my speech is very much improved as a result of hyperbaric therapy. Also I no longer drool the way I used too before taking this therapy. I hope that with further treatment my crippled limbs respond but if nothing more happens I am absolutely ecstatic with the progress so far. I achieved these results as a result of hyperbaric therapy when nothing else has worked. You name it ----I've tried it and nothing else worked. Regards Roger J. Smith This is an update from the trial lawyer in Canada.
Date: Sat, 5 Oct 2002 00:56:14 -0400
Allene, I have just come back from my 15th dive.....I would take more than one session a day but Lisa warned me that I should only take one dive a day only.....that is a limiting experience and I'm impatient as hell to take
more dives but I have stuck with the one dive per day sequence pursuant to Lisa's recommendations and contrary to the wishful thinking and optimizing I now wallow in delightfully each and every day. My diction is now almost 100% of the norm. My cognitive powers are much better than before I took this therapy. My limbs have feeling in them for the first time in 5 years on the right side. In short, I am optimistic about the future. I can phone old friends and have disgustingly long conversations about simple things like how I cooked breakfast all by myself.....burnt the toast...spilled the coffee...and had an absolutely marvelous time doing all these things....
Regards Roger J. Smith
Our daughter Clarissa was diagnosed with a very rare disorder called Severe Combined Immune Deficiency (SCID-Bubble Boy Syndrome) at the age of six months. A couple weeks after birth Clarissa was showing problems with her bowels and colitis. She was a breast-fed baby .The doctors asked me to stop breast feeding. Days later, she started to get very sick with pneumonia. ear infections, severe bowel problems and she needed oxygen. Breast milk had been keeping my little baby girl from getting terribly sick.
Clarissa was air transported to New York for a much needed Bone Marrow Transplant (BMT). Unfortunately, a couple days before the BMT and after undergoing chemotherapy, she suffered a severe aspiration pneumonitis syndrome that was associated with a cardio respiratory distress and arrest lasting more than 30 minutes.
After the arrest Clarissa was diagnosed with Spastic Quadriplegia Cerebral Palsy. She lost her vision, her hearing, her sitting ability, her beautiful smile and her pretty black hair due to chemotherapy .She had a G-tube for feedings and a Catheter for I. V. Medicines.
Even though we were afraid to exposing her more to virus and illnesses, we decide it to take her to Florida for HBO Therapy. . Before traveling Clarissa was tested for her immune levels, but her system was still below normal status. After she received over 100 HBO treatments, Clarissa's immune system had recovered to a normal level. Clarissa has now received over 200 treatments, the last 60 HBOT being done at the San Antonio Hyperbaric Clinic.
Clarissa's immune system has recovered so now she is able to go to school and be around other children. Her G- Tube has been removed and she is eating her favorite finger foods by herself and holding a cup and drinking through a straw. Her vision has gotten better every time she gets more HBO. She points at pictures. If anvone would like to talk to me or get more information about HBOT, please call or email me: Myrna Flores, San Antonio, TX 78247 210-491-9079 Email: wwwflores@juno.com
I have also just returned from the conference in San Francisco. I personally found it to be extremely enlightening and informative. Dr.Harch did an excellent presentation. Dr. Maxfeild was superb in his presentation of cancer and HBO. Philip James as usual presented very good documentation on M.S.. Drs. from China presented case after case on stroke and the successes they were getting. The Drs. from Japan were outstanding in all of there case studies. The Drs. from Mexico and there work from stem cell therapy would have blown your minds. Also there revelation and research in there findings that heavy metal toxicity is a main culprit in the reason why HBOT does not work for some people or they do not get as good effects and or lasting effects. They now no that when these metals are removed HBO's effect is dramatically increased. Now not to mention all the poster presentations for the various uses of HBO and different indications throughout the world. Yes, the Hotel was expensive, everyone new this before they decided to go. Yes, the conference was expensive, everyone knew this but still paid to go. Yes, there were people at the door checking badges for each daily presentation. Unless you were actually attending all presentations and all of the debates, you would not have known that it was a good conference. This conference was exclusively attended by Drs. and professionals working the field. If you were not able to attend every debate, every presentation, and all the poster presentations and were there mainly there for the entertainment or distracted by personal issues you would not think it was a good conference. The Drs. who were against HBOT were few and everyone knew that they did not have good supportive data. Tom Workman did not throw himself into every situation. He expressed his concerns to Oxy-Health about the portables and then came back the next day and apologized for his harsh comments. Marlene Orndorf approached Tom Workman herself gave him a flower and a big HUG. Regardless of a recent posting I was impressed with this meeting and came away with allot of new additional information on how HBOT is being used and expanded throughout the World. Ken Locklear was superb in his presentation for Near-Drowning and it should be noted. Allene Creacy
Sent: Friday, July 12, 2002 10:21 AM
To: 'mums@netnet.net'
Subject: Tatum's treatment history
Here was my post on medicaid for hbot
Feb 2001 - The first 40 were done at 1.5 twice a day. We saw tremendous!!! improvement in her spasticity the first 2 weeks. Then she started regressing. By the time we finished the 40, she was justa step above where we started a month earlier.
July 2001 - The next 12 treatments were also 1.5, saw minimal results.
Sept 2001 - The next 23 treatments were at 1.75 once a day, saw nothing.
Dec 2002 - My husband called Dr. Harch. Dr. Harch was kind enough to call us back and had a long conversation with my husband, said he had not personally seen a case like our daughters (toxicity at 1.5,
regression while still receiving treatment) but had heard of similar cases. He recommended 1.3 the next round.
Jan 2002 - The next 19 treatments were at 1.3, saw improvement, not as quickly or drastically as we did the first 2 weeks on the first set. We stopped at 18 because we didn't want to get to "greedy". 10 days later my daugther took 10 independent steps.
Mar 2002 - The next 8 treatments were also at 1.3, she loosen tiny bit, but I think it helped maintain what we had gained the month before.
To sum it up, we have spent boocoo bucks on treatments that were not therapuetic for our daughter but have learned quite a bit about what is right for her. I can't wait to do a full round of 40 at 1.3 – so far the logistics have prevented us from doing this. There are 8 hospitals with chambers here in Kansas City that won't treat our child. Instead we've quite literally traveled north, south, east, and west! I truly believe for HBOT to be really helpful for my daughter she is going to need full sets of 40 plus ongoing maintenance every other month or so. We are working to get a chamber here in KC for her and the other kids here in the mid-west. Either
that or move to another city that has one...Sincerely, Lisa Deister
Case Summary: Katelyn Bryant DOB: 1/13/92
July 9, 1998, this beautiful little five year old girl was in a serious motor Vehicle accident. She was in intensive care for fourteen days and on a ventilator. Because of a rise in intracranial pressure she was given large doses of Mantidol. On July 23rd, she was out of ICU. A scan showed an impending hydrocephalus and a VP shunt was placed. August 3rd, patient was then moved to a rehabilitation center and by August 23rd, she had showed basically no improvement. She was then sent home with her parents to do the best they could. They were told to keep her comfortable and the outlook was dim. On September 9th, patient was re-evaluated and the family was told to expect no more. November 6th, she was taken back to Children's Medical Center for a revision of the shunt. This apparently resulted in somewhat of a reduction size of the ventricles. She then returned home. By December 10th, the parents were told that there would never be any further progress and that she would live in an apolic or vegetative state for the rest of her life. They were told that the patient would worsen at times, be subject to infections, and probably die from this.
After a few years of constant infections, illnesses, and many hospitalizations, the family discovered the Hyperbaric Oxygen Therapy and she was brought to a facility for treatment. At the time she was seen, she was noted to have post-traumatic hydrocephalus with a working VB shunt in place. Diabetes insipidus had ensued and a G-tube was placed following fundoplication. She was on intrathecal Baclofen pump. With all conservative, very expensive medications, she was becoming worse. She was treated for pulmonary care, hospitalized for pneumonia and then developed seizure disorder. She was on three types of seizure medication.
Irrespective of the seizure medication, she had five to ten seizures per day even up to Grand Mal. The pulmonary doctor told the parents that there was no option and that they were to start IPPP to help keep the airway clear. Patient had no swallowing or gag reflex and she was completely dependent on the G-tube for nutrition and medication. There was poor central control of the temperature and at times would rise to 104 / 105 for no known reason. A cooling blanket was used. Surface oxygen was given at home when her O2 Sat would fall.
Katelyn arrived in Florida on September 20th, 2001 for treatments with hyperbaric oxygenation. Initially, a functional single photon emission computerized tomography (SPECT) scan was performed. The results of this and sequential SPECT scans accompany this report. There was no promise that hyperbaric oxygenation would help and the parents were told to keep an open mind. After 75 hyperbaric oxygenation treatments, Katelyn was much better. Her SPECT scan showed considerable improvement and all seizure medications were discontinued as her seizure activity had disappeared. Pulmonary toilet was stopped and she required no suctioning. She began her swallowing and gag reflexes. She was able to eat by mouth for the first time in three years. Certain foods would require thickening. Katelyn still has the G-tube in place although much nutrition is given by mouth. It is hoped that in the very near future, the G-tube will be removed. Temperature control now has resulted in discontinuing the cooling blankets. Patient no longer takes antibiotics and no longer has the risk of aspiration. She is much more aware of her surroundings and is able to interact more meaningful with her parents. The reduction of medication was a slow tapering off from September 21st to November 17th. The medications were Topamax, Depakene, Astelin, Rhinocort, Pulmicort, Albuterol, Robinol, Clorazepate, Prilosec, Zyrtec, Restoril, prn oxygen, Diastat. This represents a minimum of $9,000 per month reduction in cost to the insurance company.
The most recent physical exam on - February 7th, 2002 showed: Blood Pressure: 100/60, P: 94, R: 16. Patient has good skin color. Her state of hydration is excellent. The patient is semi-apolic but seems to follow some simple commands. She smiles and responds to pain and tactile stimuli. Corneal reflex is intact and she attempts to follow objects. Patient's hearing seems good. The throat and ears are clear. Heart - PMI 6th inner space mid-clavicular line regular rhythm. Lungs clear to percussion and auscultation. The abdomen shows the placement of a G-tube without inflammation at the insertion. Peristalsis sounds are heard. The extremities show no edema. The spasticity is minimal and there is no evidence of any decubiti ulcers. There seems to be movement in all four extremities. The reflexes are somewhat hypoactive.
Diagnosis: Traumatic brain injury with improvement in the Glasgow Coma Scale from three to eight.
Recently, Katelyn's parents have applied for insurance coverage for hyperbaric oxygenation which has been denied. It is essential for her continuing health and well-being, that she continue the hyperbaric oxygenation treatment. Not only should the patient be helped significantly, but the tremendous financial liability to the insurance company would be reduced by approximately 90 percent.
Katelyn has now had a total of 105 hyperbaric oxygenation treatments and is scheduled to return again in the spring for another series of forty treatments. All physical therapy, occupational therapy, speech therapy, and nutritional counseling must be continued on a frequent basis for preservation of well-being.
Katelyn has now had a total of 105 hyperbaric oxygenation treatments and is scheduled to return again in the spring for another series of forty treatments. All physical therapy, occupational therapy, speech therapy, and nutritional counseling must be continued on a frequent basis for preservation of well being.
R. A. Neubauer, M.D.
After 10 Treatments:
Katy became more aware of her surroundings. Katy began sleeping on a better schedule. Katy once slept 2 hrs. and awake for only 10 minutes. Katy is now awake all day and sleeping through the night.
After 15 Treatments:
Katy required less suctioning. When we once had to suction Katy a lot we are now not having to suction her hardly at all and she is beginning to manage her Secretions on her own. Katy is more aware of her surroundings and looks at you when you talk to her. If someone walks up while you are talking to her she will look at them and make eye contact. Katy knows when she is going to therapy. She is aware of what's going on. Katy has been having Physical Therapy pretty much since the beginning of this Therapy and she knows what's going on and is responding well to Physical Therapy.
Katy's body is now warm and not cold and clammy as it once was. Glory to God!
Katy has had 32 treatments as of October 9th, 2001 and will begin speech therapy on October 10th, 2001 to begin learning how to speak, follow directions, and possible eat on her own without the aid of her G - tube. (feeding tube)
Katy had a sour grape candy put into her mouth, she made a face and pushed it out of her mouth on her own.
The Therapist told her to push something out of her mouth and Katy did it. She responded to comand and is now ready for Speech Therapy.
Katy has also started controlling her secretions more on her own requiring less assistance in clearing her airway.
Katys swallow study is Monday 15, of October at 4:00 PM please pray for a successful study. Katy hasn't tasted food or eaten on her own in 3 yrs.
THIS WILL BE AN AWESOME MIRACLE FROM GOD FOR THIS CHILD TO EAT AGAIN!
Katy is seeing a Neuro Optomologist on Wednesday the 17th of October to see what she is seeing. We no she can see but to what degree this will tell us.
Katy has had 72 treatments in all we are home now and have been home for 3 weeks she is so much more aware and sometimes she'll even laugh out load.
It September 2, 2002. It has been a while since I have posted anything wanted you all to know Katy got to start school for the first time in four year's. This is something the Dr.s said would never happen. Katy can say Momma and is doing wonderful. I looked at a tape the other day when she first got hurt and cannot believe the change. She is so alert and stay's awake most of the time now. She knows hat is going on around her more now than ever. She does not like to sit in her wheelchair she want' to stand but can't only in her standing frame. She does not like using a diaper and screams everytime she is getting ready to go to the bathroom. I cannot tell you how much of a blessing HBOT has made in our life. If you have a loved one that need's HBOT please feel free to email me or look at the links page for more information. Katy's baclofen pump has now been shut off and the Dr.s said when it was put in it would never come out. Her spasticity was so bad it almost broke her bone before the pump was placed and now the pump has been shut off and she requires no more baclofen.
-------------------
Katy has had 200 HBO treatments and 2 stem cell transplants. She is no where near the same child as for years ago when the injury first happened. Katy has progressed in way's the doctor's never thought possible. Katy is much more aware and is on strong road to recovery. When this first happened I wondered how will I face this. I now no the answer. You face it one day at a time, each day offers new hope. With GOD nothing is impossible. If you have a loved one that has just suffered a injury an you are looking for answers or way's to help your loved one, remember there is hope and face it one day at a time.
A lot of people say it's just a change, they can't recognize God's role in this. God has provided and made a way. We get all our knowledge through him and therefore I can take no credit for her blessings, we are all just vessels to do his work.
A special Prayer goes out every night at 9pm for the miracles to continue with Katy. Please join us, and make a promise to pray for Katy every night at 9pm. See the webpage on the Promise to Pray prayer group. Join us today!
Katy will be a Living Testimony of God's Miracles as well as testimony that God still hears our prayers and ALL GLORY GOES TO GOD !!
Update She is now eating by mouth and is doing wonderful. She is now trying to communicate with us. She has developed attitude. She is able to let us know what she wants.
Katy Just returned from Florida. We went on April 8th and returned on April 28th. She is doing much better she has calmed down a lot. Her spasticity is almost none now. She is much more aware. She is trying to put words together. She can sure let you know if she wants something to. It's like I have a new child since Hyperbaric. It is like God just brought her to a new state. Before the Hyperbaric we had nothing. Now we have our daughter. I owe my life to Dr. Neubauer and his staff for making this possible. Very few Clinics will treat brain injury they say it is experimental. Well you can't tell Katy or us that, or over 75 other patients we follow. Dr. Neubauer started this clinic in 1972 and has helped thousands of people. However it is still not known to many and many people die everyday or lay untreated because the word needs to get out. I have written to several talk shows and had only one reply from Montel Williams saying they were passing it on their producers. Help us spread the word.
Dec 2002 - My husband called Dr. Harch. Dr. Harch was kind enough to call us back and had a long conversation with my husband, said he had not personally seen a case like our daughters (toxicity at 1.5, regression while still receiving treatment) but had heard of similar cases. He recommended 1.3 the next round. Jan 2002 - The next 19 treatments were at 1.3, saw improvement, not as quickly or drastically as we did the first 2 weeks on the first set. We stopped at 18 because we didn't want to get to "greedy". 10 days later my daughter took 10 independent steps. Mar 2002 - The next 8 treatments were also at 1.3, she loosen tiny bit, but I think it helped maintain what we had gained the month before. To sum it up, we have spent boocoo bucks on treatments that were not therapuetic for our daughter but have learned quite a bit about what is right for her. I can't wait to do a full round of 40 at 1.3 - so far the logistics have prevented us from doing this. There are 8 hospitals with chambers here in Kansas City that won't treat our child. Instead we've quite literally traveled north, south, east, and west! I truly believe for HBOT to be really helpful for my daughter she is going to need full sets of 40 plus ongoing maintenance every other month or so. We are working to get a chamber here in KC for her and the other kids here in the mid-west. Either that or move to another city that has one... Sincerely, Lisa Deister
I am still researching the Medicaid issues here in Missouri. Apparently MO Medicaid doesn't have a "program" for free-standing centers so even though they would cover the treatment they won't reimburse the centers that would actually provide the treatment.
Subject: [MedicaidforHBOT] HBO in Virginia
Reply-To: medicaidforhbot@yahoogroups.com
Dear Group, I would like to help in whatever way possible to have insurance pay for HBO treatments here in Virginia. I have a daughter age 4.5 with cp who has had 40 treatments in Canada and 22 in Baltimore (both clinics since closed). I noticed improvements in Katie during and after the treatments. Her pediatric neurologist Dr. Lawrence Morton , MCV Hospital, Richmond, VA did not dismiss the idea of having HBO treatments. Believe me this was a surprise to me! I hope that I can help as I am a RN who works in Critical Care. I am used to observing my patients for any change and I think that most of my observations of my daughter comes from the nursing perspective.
Please let me know what I can do to help. I would also like to know if there is a push also in the state of North Carolina as I live close to the border and it would be easy for me to travel to Duke Hospital for HBO treatments.
Sincerely, Betsy A. Tyler RN BSN CCRN MOMMIE
After hyperbaric oxygen treatments started:Error! Bookmark not defined.
? After 14 treatments there was increased head control.
? After 17 treatments she started scooting on the bed and sofa.
? After 24 treatments she started thrusting her tongue out of her mouth and vocalizing.
? With 34 treatments Sandra tried to crawl with assistance.
? At 43 treatments we noted a decrease in seizure activity.
? Drinks through a straw
? Motor planning skills improving
? At 60 treatments we witnessed increased swallowing and chewing; also a better control of liquids.
? With 64 treatments she rubbed her nose.
? After 78 treatments she turned over repeated from her stomach
? At 92 treatments we noted increased leg activity
? With 101 treatments we noted pumping leg action.
? At 105 treatments Sandra sat up in a chair (recliner upright).
? After 115 treatments she has increased alertness, giving kisses to family members, increased vocalizing, watching cartoons, and increased awareness to surroundings.
Subject: Re: [MedicaidforHBOT]
From: "julie obrien"
I really have to share our experience so far. Our youngest daughter will be four in a few weeks. She has CP. After only six treatments she can now sit "indian style" on the corner of the sofa and on the floor with minimal support. .She can also roll from her tummy to her back. She never could get off her tummy prior to this. And no amount of support could enable her to sit up on the floor or sofa. She was limited to special seating devices with multiple straps and attachments. We are so happy for her. Our nine yr. old that also has CP seems to be improving as well. Her Sunday school teacher came up to me after class yesterday to show me a paper Anna had colored. It was much improved from her previous work.
We have other children that also suffer from ADD, Tourettes, LD, etc. They are also using the chamber and we have yet to notice any change there. But we are thrilled about the changes in the girls, especially Elena. God Bless, Julie Obrien
Ran in the Kane County Chronicle on Fri, Jan 17, 2003.
Treatment helps with hugs
Hi, I am new to this group. I am a mother of quadruplets, two of whom have CP. The kids are now 5.5 yrs. old. We have been to Ability Camp in Canada 4 times, and just can't logistically do the trip anymore. My daughter, Katherine, is a spastic quad and has done the most treatments (132) and we have only seen improvement in her oral motor control. Colin, spastic hemiplegia, has done 69 treatments and has been seizure-free since the last. We are looking into buying a chamber and I was told by a friend to look to this group for information and advice. I have sent for more information on the "inflatable" chambers from oxyhealth.com and wondered if any of you have experience with these or with similar ones. What are the pros and cons of these "portable" chambers? Are they as effective as the standard kind? Any info would be greatly appreciated. Deena Ryan, Revere, MA
From: "Michael Tyler"
Betsy- I can relate to what you said about your daughter recognizing sites when riding in the car. My daughter has had over 80 treatments and when we're in the car, she points out familiar sites and tells me when she thinks I'm not going the right way to a location. She has a better sense of direction in the car also. There is better balance and she has had no seizures- that I'm not sure if it is from changing to keppra or from the hyperbarics. Sue
God gives special children to special parents. If you're one of us lucky mom's or dad's, congratulations! You are part of the chosen elite, and the strength you gain will be immeasurable. Thank you for your time and bless your hearts for connecting all of these special needs families.
Chantillie I. Carroll 534 Bruns Dr. Rossford, OH . (419) 666-5595
Subject: [hbotforcp] Our first experience with HBOT
We spent the month of June in Toronto in the care of a wonderful gentleman (Hi, Murray!) for our first 38 sessions of HBOT. I was never convinced that this was something we had to do for our daughter but I discovered that the Hyperbaric Center of Toronto was very near our usual accomodations when we are having physiotherapy in the city so we decided to give it a try.
I didn't see much immediate affect but having been home for a few weeks now, I'm convinced that Sierra has made significant cognitive improvements directly attributable to her HBOT and we will soon be returning for 30 more sessions. She is nonverbal and, although she hasn't developed any new words, she is communicating much more easily; she responds with a sign or by pointing much more rapidly and is engaging in more vocal play. She is using her former communication tools in different contexts and with more complexity. She is more spontaneously affectionate, more flexible in her routines, and is no longer constipated. (a surprise gift from HBO) We are very excited for her and for what the future holds for her with this addition to her treatment regime.
Kim Torres
writes:
This is very true - I can almost picture the clock in my head ticking. The neurologist we saw last week indicated that the window
of best opportunity to improve cognition and function in CP kids is from birth to about 7 - is that true? Does anyone know what that statement is based on?
The idea that 7 is the latest window of opportunity is cock and bull. It is the age that some doctors swear that the spasticity undergoes a dramatic change. Some doctors insist on doing orthopedic surgeries as early as possible even though they know full well that the earlier you start, the more likely you'll have to repeat them. Others are saying that they won't do surgery before the age of 4, others at the age of 7. I personally, having been through four orthopedic surgeries say that it should only be done as a very last resort after all the other alternatives have been tried. You lose more than you gain from most of these surgeries. They weaken our muscles, not strengthen them and we lose ROM and function as well in the process. Botox doesn't work and is very
painful and traumatic. Hope this helps, Dina
March 17, 2003
Katy got her glasses today. She really liked them a lot. I didn't realize how much of a difference it would make. I can tell you she can see much better. Before Hyperbarics Katy had some Optical Nerve damage and it was thought she might not be able to see. Today she sees 20/30 vision. This is a miracle in it self. Katy is now in School full-time. She goes everyday like the other kids. She is doing great and mastering most of her task's that are laid before her.
Hi and congratulations on making such a big decision. I know it is a tough one but I also know you will be amazed and pleased with the results.
My son will be two in September. We have completed 40 HBOT treatments and are on an eight week rest. We will resume treatments in September and are looking forward to it.
Lori-ann "Lori-ann Engel" threeengels2001@yahoo.com
Almost no drooling
Improvement in reading (in the last 2 weeks his teachers have seen this, we really didn't notice any until now, I was thinking maybe the HBOT wasn't going to have an impact on this? - Thank God I was wrong) Being able to concentrate during violin lessons. His violin playing is much more smooth and fluid.Better neater handwriting. And the most surprising of all is his vestibular improvement. I may even say complete repair. Cole has had sensitivity to spinning since he has been 3 yrs. At 4 he was tested with the traditional rotary chair test and he had gotten a nastigmus(spelling?) response from just a half rotation. In the past if he was spun around he would complain of feeling sick. Say he wanted to go to bed. Go up to his own bed, put himself to sleep and then wake up the next day! It had gotten a little better after doing the Doman program but the idea of rides or merry go rounds were not even imaginable. In the last 2 weeks at school he has come home to tell us that he has kids spin him on the tire swing as fast as possible! I think he may still be getting a slight headache from this but just the fact that he would even get on the tire swing and let someone spin him is absolutely mind boggling. I know none of us are spending thousands of dollars to fix a merry go round problem, but I just know that this means more good things are in store for Cole! When I asked him why he thought he could now do this his reply was "because of the Oxygen treatments and repatterning." (We do Dianne Craft's/Brain Gym's repatterning along with the HBOT.)
I just wanted to share some good news. I know many of you have so much more to tackle with your children than I do with Cole, but it is great to see such
positive results from HBOT for milder injuries.
Best Wishes! Diane Strauss dianelstrauss@aol.com
Since her accident in July 2003, Grace was in the hospital in Detroit until early October and went to Florida with mom to get hyperbaric oxygen treatments until December 20th.
Grace has faced several challenges that began with as much as 30 minutes without a sustained heartbeat and there was little hope for any recovery. After a few weeks we were told that she would not improve any further than her state of coma. When discharged from the hospital in October she was on nine medications and not responding to her environment though she did move her head, eyes, and arms.
Since her hyperbaric oxygen treatments began in October she has began to swallow, hold her head up, babble some, and is far more aware of what is going on around her. She has also been able to stop taking ALL nine medications previously prescribed.
December 18, 2003 - Grace had a SPECT scan done this week to compare to the original test done when she arrived at the clinic in October. The test showed improvement in her brain activity and blood oxygen levels in her brain. This is certainly good news.
Most importantly Grace has shown significant improvement clinically. When discharged from Children’s Hospital of Michigan October 3rd, doctors had determined that Grace had no gag reflex and would not be able to eat food. Doctors also reported that physical and occupational therapy were yielding minimal results of improvement. She was not able to hold her head up, had little, non-purposeful, movement of her arms, and she had no movement of her legs and feet. Grace also showed very little response to her environment such as sounds, light, and physical touches.
Since hyperbaric oxygen treatments began in October Grace has shown profound improvements. Grace has gotten her gag reflex back. She has had a swallow study done which shows she is able to protect her airway and food flows into her stomach. She can now eat Stage 2 baby foods. Our goal is to be able to remove the feeding tube and pump. She is now consistently holding her head up on her own. Grace has more substantial and purposeful movement of her hands, arms, and even legs. She pushes away with her hands especially during bathing, and reaches and pulls at the feeding tube area. Grace has become much more alert to her environment and is now responding to stimuli by moving her extremities in response to pain or being “tickled”. She has even tried to roll on to her side.
Remarkably, Grace has been weaned off 2 addictive prescription drugs, Phenobarbital and Baclofen, since these hyperbaric oxygen treatments began. According to doctors earlier these drugs were required to keep Grace from having seizures.
Donations for Grace's medical bills can be mailed to:Grace Mallery Fund, 6357 Dutch Road, Goodrich, MI 48438
Email:mail@fortheloveofgrace.com
To:
Sent: Tuesday, December 07, 2004 1:48 PM
Subject: Re: [NeuroHBOT] Re: parents input on hbot
I just wanted to report that Elise, my almost 3-month-old granddaughter, has been receiving HBOT at the Richardson facility. Although she has only had about 13 dives so far, I cannot tell you the improvement we have seen already. Elise is deaf, so she of course, has not been making many baby sounds at all. She has started gurgling, cooing, and being generally happy and satisfied. She has been looking at us more and has even been smiling quite a bit. We have been blown away. It is like she has decided to wake up. We can hardly wait to see the other fantastic results we know are down the road. Cathy
Most people who have used hyperbaric oxygen have almost certainly come under the scrutiny of professionals involved in the care of their children with brain injury. Many are quick to criticize its use. Objectively, what are the parents of these children looking for? They are not looking for a cure. They are looking for the statistically significant improvement seen and reproduced in a number of studies now. These changes represent significant improvement in quality of the lives of these children and their caregivers.
Today I will share one of these changes. A child almost 11years old with spastic diplegic cp that received their first hyperbaric treatment seven years ago. To date he has over 350 treatment. Even though he was toilet trained, the family at home and a number of care providers at school had the task of taking care of his toileting. To date no OT or PT has work at him being independent in this task yet with changes seen through HBO in the reduction of spasticity, this week for the first time he has toiletted himself from start to
finish with no mess. The individual subtasks involved are getting to the bathroom, getting undressed, coming from a position on the ground to an upright position, getting onto the toilet, cleaning himself, getting off the toilet and getting dressed. The fact that this has a huge impact for the self esteem of the child. Imagine this change and what it means to the family. By the way the
child weighs 62 pounds and the mother weighs 95 pounds. Quality of Life
Matters! Best regards, Tom Fox
Reply to Tom. I couldn't have said it better. My 25 year old son is 10 years post TBI. He is 'almost normal" but the deficits he does have keep
him from living a normal, independent and satisfatory life. His boredom leads to aggitation which then leads to anger which then leads to "self
medication". In other words, drugs and alcholol. His alcholol abuse is destroying not only his life but that of his father and I because we REFUSE to let him become homeless, a ward of the state or even an inmate in some prison. We have only given him 40 hbot treatments to date and saw minimul improvement but we are looking forward to 200+ more!! By the way, no other treament did this. Kevin lacks good decision making skills so his Dad and I are left to help
with any major decisions he needs to make. We are often criticized for "not letting him grow up on his own". Again, Kevin seems so normal but only the people who live with a brain injured person truly know the extent of their deficits. I wish I could stand on an imaginary roof top and shout to the whole world how important HBOT is to those of us who know how little "traditional" treaments actually result in the type of improvements we see in HBOT.
Today I am a very angry person. Thank you, Pat Vosberg ,Tucker Rocky Accounts Payable
817/258-9209
817/258-9035- fax
pvosberg@tuckerrocky.com
Sent: Sunday, February 13, 2005 11:22 AM
To: NeuroHBOT@yahoogroups.com
Subject: Re: [NeuroHBOT] Julie
Julie, my son was 4 when we did 40 dives. He had a stroke some time during birth. He made many gains during HBOT and even more between 3 & 6 months post HBOT. Most of his gains were cognitive, however we saw improvements in speech and gross motor as well. His fine motor skills remained about the same. Can I answer any more questions? Susan K.
> Mandy,
> My son has done oxygen 3 different times. He continued to show improvements for 3-4 months. The improvements then slowed
dramatically, but he never lost what he gained. > Dianna Mom to Nick, 5 years DS, Autism, Epilepsy cured
> Sent: Thursday, April 14, 2005 1:50 AM
> Subject: [NeuroHBOT] Lasting results
> We are starting the first 40 sessions on May 2nd but I just wanted to ask wether the results are lasting. If there is improvement in a child will this last or fade away after a few months. Some persons told me different stories on this. > Mandy
> Mandy,
> My son has done oxygen 3 different times. He continued to show improvements for 3-4 months. The improvements then slowed
dramatically, but he never lost what he gained. > Dianna Mom to Nick, 5 years DS, Autism, Epilepsy cured
> Just to let you know how the testing was done here in Malaysia. My son was part of a pilot study on effects of HBOT on kids with CP. Private chambers have opened here and we can now do 1x daily ( I do the evening sesssion now) I think it is important to take pictures during therapy ( same exercises and positions but at various intervals) that way the changes are most obvious.I use photograph at 3 monthly intervals and do a quaterly report. One must also remember that HBOT is adjunctive treatment and will open windows of opportunity. During our blocks of HBOT my son is not stiff at all and I make full use of this to stretch him and we put in a bit more effort in his physical programme. He has to work about 4 to 6 hours daily. He cycles on his special trike for 1/2 hours daily and swims 2 x a week and goes for hippotherapy 1x weekly. > I can't say enough good things about HBOT and it is well worth the time and cost ( though here in Malaysia it is very friendly at Ringgit Malaysia 5,600./= for a block of 40 session. > Cheers/Fezia > http://www.interactive-metro.com
To: NeuroHBOT@yahoogroups.com ;
Lisa, I'm glad you joined this group. It doesn't seem like a lot of parents on the e site are very open to hyperbaric. Today at therapy
Rach rode a tricycle all around the inside of the building. Her record was 11 pushes with her legs and today she just took off, her PT was just amazed, she was trying to help her steer and she just kept on going, I wasn't there but my husband said everyone was just so happy. Gee only had 7 sessions and this happened, I know it was the HBO that helped her.
From: "mom_still_hoping"
Subject: Re: Another new member