Guest guest Posted January 28, 2005 Report Share Posted January 28, 2005 I haven't tried it or seen any articles / literature on it. I would be interested to read about it if you know of any. hyperbaric oxygen therapy Has anyone on this list tried hyperbaric oxygen therapy (HBOT) for Mitochondrial Disease? I have met one mom who's daughter did great but would like to hear from others who have tried this therapy. Thanks, Deister ldeister@... Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2005 Report Share Posted January 29, 2005 Hi , at the last Mito conference one of the docs (can't remember who off hand) said not to try HBOT. Some patients have tried it with no success. I know supplemental O2 (inhaled) also can cause cell death although some people must be on it to survive. All the Mito doc's i've heard have said for us not to use supplemental 02 unless absolutely necessary because of this. bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2005 Report Share Posted January 29, 2005 thanks for your responses, I have forwarded them all to my friend. - I've included some of the info gathered so far. Did the doc at the conference say not to try it because of the cost, I've never heard of hbot causing harm to cells but I'm not that familiar with Mitochondrial Disease, my daughter has Cerebral Palsy which has responded really well to HBOT. here are some of the posts/links collected so far: http://www.hbot4u.com/brain70.html -------------------- From http://www.madison.com/wsj/home/local/index.php? ntid=21506&ntpid=5 Little Grace beats very tough odds Ingersoll Wisconsin State Journal Grace Kenitz, 5, has an extremely rare cell disease that has nearly claimed her life countless times. But last week, she started kindergarten at Chavez Elementary School on Madison's Southwest side. It's the first time she's been to school, and 15 classmates in Hansen's kindergarten class all help take care of her. " Last week we have a moment when we were eating a snack and she said, 'yum, yum,' and that was just a wonderful moment, " Hansen said Thursday. Kindergartner Abigail Serio, 6, helped push Grace in a swing during recess. Abigail said she likes Grace " because she's new and it's fun helping her, so she'll learn some more. " Kenitz, Grace's mother, said Grace's failure to thrive as an infant mystified doctors, until at age 1 she finally was diagnosed at the Buffalo Children and Women's Hospital with mitochondrial cytochrome C reductase deficiency, which means her cells lack an enzyme responsible for converting food to useable energy. Deprived of fuel, Grace's bodily systems began shutting down, her mother said. " Doctors told us there were only four cases in the world they could find, and all had died before age 2, and Grace was 1, " Kenitz said. " She was in hospitals all but 20 days of her first year and a half. " Grace was plagued by near- constant seizures. She went blind at 9 months. At 3 years of age, she weighed only 10 pounds and was fed through a feeding tube. She couldn't walk or talk and would stop breathing while she slept. When Grace was about 2, her mother read about hyperbaric oxygen therapy, a still controversial therapy touted by adherents as helpful for strokes, wound healing, cerebral palsy, brain injuries, near drowning, crush injuries and other maladies. It offered hope, Kenitz said. So Kenitz pulled Grace out of St. 's Hospital and took her by ambulance to Fort Lauderdale, Fla., for hyperbaric oxygen therapy, or HBOT. The practice of oxygenating human cells was originally devised to treat decompression sickness in deep sea divers. In a hyperbaric oxygen chamber, a person breathes 100 percent oxygen at pressures greater than normal. That increases the concentration of oxygen in cells and tissues with insufficient blood flow, in the hope of awakening them. The U.S. Food and Drug Administration, which regulates manufacture and marketing of HBOT chambers, has approved the devices for treating 13 conditions. " After 45 treatments, she started waking up, moving her fingers, sitting up, " Kenitz said. " Most remarkable, she was seeing. She started reaching for things and tracking them. She's a little bit far-sighted, but she can go over to the tiniest bit of paper and pick it up. She's off all medications. She feeds herself. " Seizures are rare, and Grace now walks with a walker. She speaks about 10 words, including " puppy. " Kenitz became an advocate for HBOT, ran an HBOT clinic in Florida for a while and now is director of the International Hyperbarics Association, a non-profit advocacy group headquartered in Hacienda Heights, Calif. Today, Grace has had more than 400 HBOT treatments. Her family owes about $80,000 for the treatments and has about $300,000 in hospital bills, but future HBOT treatments will be free because a physician gave Kenitz a $20,000 portable hyperbaric oxygen chamber. Grace now has one- hour HBOT sessions during the week and two sessions per day on the weekend. " She plays in it, " Kenitz said. " It's big enough for two adults to play cards in. " Kenitz added, " The reason Grace is starting kindergarten is hyperbarics. . . . She is thriving. Doctors won't say she's cured, but how else do you explain it? " " She's not cured, but there's been a significant improvement, " said Dr. Yaffe, a pediatric gastroenterologist at Dean Clinic who installed Grace's abdominal feeding tube years ago. " A hyperbaric chamber is not yet an approved method of treating her disease. Conventional medicine does not see (HBOT) as an advantage, but (Kenitz) would like it to be seen as part of mainstream Western medicine. It's seen as helping, but we need studies to know whether this is really effective treatment. " Dr. Harch, president of the International Hyperbaric Medical Association, said, " In the past eight years, studies have shown that the site of action of HBOT oxygen in patients with chronic wounds is at a DNA level. It stimulates the DNA. We suspect hyperbaric oxygen may be acting at the DNA level in Grace's condition. " At Chavez, Grace has quite a team working with her: her kindergarten teacher, a special education teacher, a physical therapist, occupational therapist, speech and language teacher and a vision specialist. " I think it's fantastic, " said Grace's grandfather, Mathews, who was at the school Thursday. " About five years ago, they gave us no chance she would live, so to think she's started her first day of school, it's like Christmas to a kid, or your wedding day, or the day you have your first baby. " From: " dubblmom " Date: Tue Dec 9, 2003 2:49 pm Subject: Re: Grace Kenitz ADVERTISEMENT We've just returned from treatment in Florida where we heard incredible stories about this little girl - I believe they call her " Amazing Grace " as well they should. However, from the little I know of this family's situation, it is my understanding that her mother has made astronomical sacrifices - personal and financial - in order to see her daughter receive HBOT. I actually spoke with Grace's mom and she told me that even though many of Grace's physicians didn't give her a chance, when she saw the early improvements in her daughter, she vowed not to leave Neubauer's until Grace was cured. I know that she is currently imbroiled in a fight with Wisconsin Medicaid in order to get this treatment reimbursed (which surely leads one to ask what more on God's green Earth these bureaucrats need to see to determine if this is an " effective " treatment?). As a Wisconsin resident, I pray she succeeds. I'm sure that Grace's mom would say that the sacrifices she's made are worth it but, ultimately, I am struck by the irony of this story - stories like these make me want HBOT for my son even more yet, when I look a little deeper, I am struck by how truly sad it is that this family has had to struggle in so many ways in order to get this life- saving/altering treatment for their daughter. Where is the justice? Lynn > > Hi , at the last Mito conference one of the docs (can't remember > who off hand) said not to try HBOT. Some patients have tried it > with no success. I know supplemental O2 (inhaled) also can cause > cell death although some people must be on it to survive. All the > Mito doc's i've heard have said for us not to use supplemental 02 > unless absolutely necessary because of this. > > bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2005 Report Share Posted January 29, 2005 As I recall, they said there hasn't been any testing with regards to Mito and that Mito patients are " very vulnerable " to trying experimental treatments. I think it was Dr. Shoffner from Atlanta, but don't quote me on it. I know one of the concerns is that patients with Mito are fragile metabolically speaking. Adding more oxygen to one's system could potentially be toxic because the system just couldn't handle it. bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2005 Report Share Posted January 29, 2005 , Dr. Shoffner told me he knew some parents who chose that therapy for their child, and the child was permanently injured by it. I have done over 40 sessions myself without damage, but I don't know at this point whether I actually have a mitochondrial disease. Tim ----------------------------------------------------------------- Has anyone on this list tried hyperbaric oxygen therapy (HBOT) for Mitochondrial Disease? I have met one mom who's daughter did great but would like to hear from others who have tried this therapy. Thanks, Deister ldeister@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2005 Report Share Posted January 29, 2005 Adding oxygen to the system causes an increase of free radicals and free radicals cause damage to the mitochondria. I know I can't afford to damage anymore mitochondria. Most of the recommended supplements are anti-oxidents to try to protect from this damage, therefore slowing progressions. laurie > > Reply-To: > Date: Sat, 29 Jan 2005 18:33:27 -0000 > To: > Subject: Re: hyperbaric oxygen therapy > > > As I recall, they said there hasn't been any testing with regards to > Mito and that Mito patients are " very vulnerable " to trying > experimental treatments. I think it was Dr. Shoffner from Atlanta, > but don't quote me on it. I know one of the concerns is that > patients with Mito are fragile metabolically speaking. Adding more > oxygen to one's system could potentially be toxic because the system > just couldn't handle it. > > bug > > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail is > entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with their > physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > ---------------------------------------------------------------------------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2005 Report Share Posted October 3, 2005 Louise, No I have not heard of the HBO. Thank you for sharing and letting us know about it. Ingrid > BlankTo All Listmembers, > > Does anyone have experience with Hyperbaric Oxygen Therapy for healing post radiation or post reconstructive surgery? > > Louise > > > > http://www2.curative.com/Cuebic/Curative/me.get? web.websections.show&CURATIVE_1215#skin > > Radiation Tissue Damage: Hyperbaric Oxygen Therapy is the Gold Standard of Care in reconstructive surgery involving radiated bone or soft tissue. In proper coordination with surgical treatment, HBO has reoriented the approach to the repair of radiation damaged tissue. It has been shown to stimulate growth of functioning capillaries, fibroblastic proliferation, and collagen synthesis in the irradiated bone and soft tissue. Improved healing rates and reduced complication rates are seen in a coordinated reconstructive program using adjunctive HBO. > > Skin Grafts, Flaps and Replants: Following ischemia or vascular repair in cases where there has been decreased microcirculation, HBO has been demonstrated to maximize the viability and final functional level of the compromised nerve and muscle tissue. > > > Quote Link to comment Share on other sites More sharing options...
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