Guest guest Posted January 29, 2005 Report Share Posted January 29, 2005 We would like to request that all posts from Mitoldies stay on the list. Please don't forward posts without asking the person posting for express permission to do so. If it is a thread and you only get permission from the last person to forward, then please delete the previous posts in the thread. We need to feel save in posting here, that what is said here, stays here. Thank you, - Moderator wrote: > >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 >> >> > > > > > > > > > >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 Thanks for the reminder . I actually printed the post for my friend who doesn't know how to post... I'll make sure to delete in future. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2009 Report Share Posted January 20, 2009 If my wife wanted to check what posts I had made to the group she would not need to join the group. Via my email server I (or anyone with my laptop or my email password) can view any post I sent. Ian On 1/20/09, Tim Romlein wrote " If he wanted to see Colleen's contributions he could join and search them out " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2009 Report Share Posted January 20, 2009 If my wife wanted to check what posts I had made to the group she would not need to join the group. Via my email server I (or anyone with my laptop or my email password) can view any post I sent. Ian On 1/20/09, Tim Romlein wrote " If he wanted to see Colleen's contributions he could join and search them out " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2009 Report Share Posted January 20, 2009 If my wife wanted to check what posts I had made to the group she would not need to join the group. Via my email server I (or anyone with my laptop or my email password) can view any post I sent. Ian On 1/20/09, Tim Romlein wrote " If he wanted to see Colleen's contributions he could join and search them out " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2009 Report Share Posted January 21, 2009 If you look at some of Colleen's post during her surgery, they were made by her husband (Jen I think)So if he wants them or when he is ready for them he will look them up. Also if Colleen was like most of us she had her user and passwords kept somewhere at home. So he will come across them at some point. Since Colleen is not here to give her permission than we should respect that. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2009 Report Share Posted January 21, 2009 , Jen was updating to Colleens' Carepage. I was copying (with permission) the updates and posting them to this group. I don't think Jen did any posting direct. Ian If you look at some of Colleen's post during her surgery, they weremade by her husband (Jen I think)So if he wants them or when he isready for them he will look them up. Also if Colleen was like most of us she had her user and passwords kept somewhere at home. So he willcome across them at some point. Since Colleen is not here to give herpermission than we should respect that. -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2009 Report Share Posted January 21, 2009 , Jen was updating to Colleens' Carepage. I was copying (with permission) the updates and posting them to this group. I don't think Jen did any posting direct. Ian If you look at some of Colleen's post during her surgery, they weremade by her husband (Jen I think)So if he wants them or when he isready for them he will look them up. Also if Colleen was like most of us she had her user and passwords kept somewhere at home. So he willcome across them at some point. Since Colleen is not here to give herpermission than we should respect that. -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
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