Re: Hyperbaric chamber therapy

[Guest guest]

Sue Ellen,

This is the previous article on HBOT which I posted that was being refered to. For every positive story regarding HBOT & mito like this, there would appear to be a negative one as well as you have alluded to, gauging by the response from others I received to this original post

There is an article in the summer 2002 MUMS Matchmaker newsletter (web >site:>http://www.netnet.net/mums/ & Email mums@... ) which I think will be>of interest an encouragement to many of you, as it was to us, so I though I>would take the time to type it out in full, so you would all know what I am>talking about. So here it is:>>>MITOCHONDRIAL CYCTOCHROME C REDUCTASE & HBOT>>"Hyperbaric oxygen therapy is giving Grace a chance at life." Grace's>doctors in Madison Wisconsin are delighted and puzzled that the>controversial and costly treatment known as HBOT appears to be working.>>After 23 biopsies and numerous scans since birth, three-year-old Grace>Kenitz from Muscoda, Winsconsin was finally diagnosed with Mitochondrial>Cytochrome C Reductase, and extreamely rare metobolic disease. She was>legally blind last Christmas. Since Hyperbaric Oxygen treatments, Grace >can>now see, says her mother, Kenitz. Unable to put any weight on her>legs since birth, Grace is learning to walk. Fed by a gastric tube for >most>of her life, Grace now eats. "She's just a different kid," said .>For the first year and a half of her life, Grace suffered from severe>seizures. Doctors prescribed anti-seizure medication,, installed a G-tube>and tried to find the cause. "All they did was fight the symptoms, not>knowing what the disease was," said.>>About two years ago, a nerologist at Mayo Clinic switched Grace to vitamin>therapy and stopped the anti-siezure medication and that stopped the>seizures. Then , read about Hyperbaric Oxygen Therapy (HBOT) in a>parent support nesletter, the Matchmaker published by MUMS National Parent>to Parent Network. She researched it for months, then told Dr. Raoul >Ponte,>a pediatric intensivist at St. 's Hspital, she wanted to try it. Grace>had a Single Photon Emission Computerized Tomography (SPECT) scan done at>Florida hospital before she started the treatments at a Hyperbaric center >in>Florida. Similar scans were taken after the treatments. On April 8, a>radiologist reported dramatic improvement in Grace's brain.>>"There has been significant improvement," said Dr. Raoul Ponte, a pediatric>intensivist at St. 's Hospital. "There have been significant changes>that have been well documentd by scans in Florida," Ponte, a skeptic >admits.>>(END OF ARTICLE)>>Just some comments and questions regards this article:>>1. Which mito complex is Cytochrome C Reductase?>>2. I have known about HBOT for some time, however this is the first time I>have ever seen anything about it in relation to a mitochondrial condition.>I have asked about it on several newsgroups in the past with respect to>mito, with no response, so I gather there are not many others out there who>have tried it with mito patients or know much about it. Any comments,>feedback, experiences, etc. from anyone eles regarding HBOT and mito>disorders.>>3. It would be interesting to know how many treatments were involved in>gaining this improvement for Grace. (Only a phone number of the parent>followed the article).>>4. Vitamin therapy - stopped the anti-seizure meds and stopped the>seizures - please tell me more!!>>5. Anyone with experience or knowledge of HBOT in Australia? To date, our>investigation would suggest that Melbourne and maybe Townsville are the >only>places that would even accept a mito patient like our son.>>>Regards,>> & Savage.

Re: Hyperbaric chamber therapy

My son has cerebral palsy as well as a mito disorder. When I asked Dr.Boles about hyperbaric oxygen therapy, he said it could be a stressor,was pretty unknown and the benefits for the CP was also not clearlydocumented. Why would you be considering it? It is expensive and only covered byinsurance (if at all) in rare cases such as wound healing where there isdocumented benefit.Sue Ellen> tkedwards wrote:> > I think there was something posted about this, but I missed it. Has> anyone ever tried hyperbaric therapy and what are the pros and cons if> a child has mito? Does anyone know??> > Theresa> Mom to Sophie (possible mito) 10 yo, Todd 13 yo and Caitlin 8 yo> > Please contact mito-owner with any problems or> questions.> >

[Guest guest]

Sue Ellen,

This is the previous article on HBOT which I posted that was being refered to. For every positive story regarding HBOT & mito like this, there would appear to be a negative one as well as you have alluded to, gauging by the response from others I received to this original post

There is an article in the summer 2002 MUMS Matchmaker newsletter (web >site:>http://www.netnet.net/mums/ & Email mums@... ) which I think will be>of interest an encouragement to many of you, as it was to us, so I though I>would take the time to type it out in full, so you would all know what I am>talking about. So here it is:>>>MITOCHONDRIAL CYCTOCHROME C REDUCTASE & HBOT>>"Hyperbaric oxygen therapy is giving Grace a chance at life." Grace's>doctors in Madison Wisconsin are delighted and puzzled that the>controversial and costly treatment known as HBOT appears to be working.>>After 23 biopsies and numerous scans since birth, three-year-old Grace>Kenitz from Muscoda, Winsconsin was finally diagnosed with Mitochondrial>Cytochrome C Reductase, and extreamely rare metobolic disease. She was>legally blind last Christmas. Since Hyperbaric Oxygen treatments, Grace >can>now see, says her mother, Kenitz. Unable to put any weight on her>legs since birth, Grace is learning to walk. Fed by a gastric tube for >most>of her life, Grace now eats. "She's just a different kid," said .>For the first year and a half of her life, Grace suffered from severe>seizures. Doctors prescribed anti-seizure medication,, installed a G-tube>and tried to find the cause. "All they did was fight the symptoms, not>knowing what the disease was," said.>>About two years ago, a nerologist at Mayo Clinic switched Grace to vitamin>therapy and stopped the anti-siezure medication and that stopped the>seizures. Then , read about Hyperbaric Oxygen Therapy (HBOT) in a>parent support nesletter, the Matchmaker published by MUMS National Parent>to Parent Network. She researched it for months, then told Dr. Raoul >Ponte,>a pediatric intensivist at St. 's Hspital, she wanted to try it. Grace>had a Single Photon Emission Computerized Tomography (SPECT) scan done at>Florida hospital before she started the treatments at a Hyperbaric center >in>Florida. Similar scans were taken after the treatments. On April 8, a>radiologist reported dramatic improvement in Grace's brain.>>"There has been significant improvement," said Dr. Raoul Ponte, a pediatric>intensivist at St. 's Hospital. "There have been significant changes>that have been well documentd by scans in Florida," Ponte, a skeptic >admits.>>(END OF ARTICLE)>>Just some comments and questions regards this article:>>1. Which mito complex is Cytochrome C Reductase?>>2. I have known about HBOT for some time, however this is the first time I>have ever seen anything about it in relation to a mitochondrial condition.>I have asked about it on several newsgroups in the past with respect to>mito, with no response, so I gather there are not many others out there who>have tried it with mito patients or know much about it. Any comments,>feedback, experiences, etc. from anyone eles regarding HBOT and mito>disorders.>>3. It would be interesting to know how many treatments were involved in>gaining this improvement for Grace. (Only a phone number of the parent>followed the article).>>4. Vitamin therapy - stopped the anti-seizure meds and stopped the>seizures - please tell me more!!>>5. Anyone with experience or knowledge of HBOT in Australia? To date, our>investigation would suggest that Melbourne and maybe Townsville are the >only>places that would even accept a mito patient like our son.>>>Regards,>> & Savage.

Re: Hyperbaric chamber therapy

My son has cerebral palsy as well as a mito disorder. When I asked Dr.Boles about hyperbaric oxygen therapy, he said it could be a stressor,was pretty unknown and the benefits for the CP was also not clearlydocumented. Why would you be considering it? It is expensive and only covered byinsurance (if at all) in rare cases such as wound healing where there isdocumented benefit.Sue Ellen> tkedwards wrote:> > I think there was something posted about this, but I missed it. Has> anyone ever tried hyperbaric therapy and what are the pros and cons if> a child has mito? Does anyone know??> > Theresa> Mom to Sophie (possible mito) 10 yo, Todd 13 yo and Caitlin 8 yo> > Please contact mito-owner with any problems or> questions.> >

[Guest guest]

Sue Ellen,

This is the previous article on HBOT which I posted that was being refered to. For every positive story regarding HBOT & mito like this, there would appear to be a negative one as well as you have alluded to, gauging by the response from others I received to this original post

There is an article in the summer 2002 MUMS Matchmaker newsletter (web >site:>http://www.netnet.net/mums/ & Email mums@... ) which I think will be>of interest an encouragement to many of you, as it was to us, so I though I>would take the time to type it out in full, so you would all know what I am>talking about. So here it is:>>>MITOCHONDRIAL CYCTOCHROME C REDUCTASE & HBOT>>"Hyperbaric oxygen therapy is giving Grace a chance at life." Grace's>doctors in Madison Wisconsin are delighted and puzzled that the>controversial and costly treatment known as HBOT appears to be working.>>After 23 biopsies and numerous scans since birth, three-year-old Grace>Kenitz from Muscoda, Winsconsin was finally diagnosed with Mitochondrial>Cytochrome C Reductase, and extreamely rare metobolic disease. She was>legally blind last Christmas. Since Hyperbaric Oxygen treatments, Grace >can>now see, says her mother, Kenitz. Unable to put any weight on her>legs since birth, Grace is learning to walk. Fed by a gastric tube for >most>of her life, Grace now eats. "She's just a different kid," said .>For the first year and a half of her life, Grace suffered from severe>seizures. Doctors prescribed anti-seizure medication,, installed a G-tube>and tried to find the cause. "All they did was fight the symptoms, not>knowing what the disease was," said.>>About two years ago, a nerologist at Mayo Clinic switched Grace to vitamin>therapy and stopped the anti-siezure medication and that stopped the>seizures. Then , read about Hyperbaric Oxygen Therapy (HBOT) in a>parent support nesletter, the Matchmaker published by MUMS National Parent>to Parent Network. She researched it for months, then told Dr. Raoul >Ponte,>a pediatric intensivist at St. 's Hspital, she wanted to try it. Grace>had a Single Photon Emission Computerized Tomography (SPECT) scan done at>Florida hospital before she started the treatments at a Hyperbaric center >in>Florida. Similar scans were taken after the treatments. On April 8, a>radiologist reported dramatic improvement in Grace's brain.>>"There has been significant improvement," said Dr. Raoul Ponte, a pediatric>intensivist at St. 's Hospital. "There have been significant changes>that have been well documentd by scans in Florida," Ponte, a skeptic >admits.>>(END OF ARTICLE)>>Just some comments and questions regards this article:>>1. Which mito complex is Cytochrome C Reductase?>>2. I have known about HBOT for some time, however this is the first time I>have ever seen anything about it in relation to a mitochondrial condition.>I have asked about it on several newsgroups in the past with respect to>mito, with no response, so I gather there are not many others out there who>have tried it with mito patients or know much about it. Any comments,>feedback, experiences, etc. from anyone eles regarding HBOT and mito>disorders.>>3. It would be interesting to know how many treatments were involved in>gaining this improvement for Grace. (Only a phone number of the parent>followed the article).>>4. Vitamin therapy - stopped the anti-seizure meds and stopped the>seizures - please tell me more!!>>5. Anyone with experience or knowledge of HBOT in Australia? To date, our>investigation would suggest that Melbourne and maybe Townsville are the >only>places that would even accept a mito patient like our son.>>>Regards,>> & Savage.

Re: Hyperbaric chamber therapy

My son has cerebral palsy as well as a mito disorder. When I asked Dr.Boles about hyperbaric oxygen therapy, he said it could be a stressor,was pretty unknown and the benefits for the CP was also not clearlydocumented. Why would you be considering it? It is expensive and only covered byinsurance (if at all) in rare cases such as wound healing where there isdocumented benefit.Sue Ellen> tkedwards wrote:> > I think there was something posted about this, but I missed it. Has> anyone ever tried hyperbaric therapy and what are the pros and cons if> a child has mito? Does anyone know??> > Theresa> Mom to Sophie (possible mito) 10 yo, Todd 13 yo and Caitlin 8 yo> > Please contact mito-owner with any problems or> questions.> >

[Guest guest]

:

It is interesting to think about treatments, but I see that no doctor

recommended it or even approved it. My son has enough diagnoses that I

have seen **plenty** of cures, treatments and procedures that parents

may swear by, but when looked at analytically, cannot be said to have

caused the improvement. There is causality and there is co-incidence.

I am quite a doubter and hold by the " first do no harm " directive even

as a parent, so, while my son has a diagnosis of cerebral palsy and HBOT

has had successes there, I listened to the mito doctor who explained the

reasons not to experiment on my son.

I know we all fervently hope for effective treatments but you should

consider the state of your daughter's health currently and what risks

you take with an unproven treatment, even with anecdoctal endorsements

such as this one.

Err on the side of caution.

But you may have read some of my posts about not wanting to do invasive

tests on my son, since I didn't see the benefit when the tests often are

inconclusive. Since he has had some progression, I am moving slowly

into those tests but it took a change to get me there mentally.

Hope all is well and goes well for you and yours.

Sue Ellen

[Guest guest]

:

It is interesting to think about treatments, but I see that no doctor

recommended it or even approved it. My son has enough diagnoses that I

have seen **plenty** of cures, treatments and procedures that parents

may swear by, but when looked at analytically, cannot be said to have

caused the improvement. There is causality and there is co-incidence.

I am quite a doubter and hold by the " first do no harm " directive even

as a parent, so, while my son has a diagnosis of cerebral palsy and HBOT

has had successes there, I listened to the mito doctor who explained the

reasons not to experiment on my son.

I know we all fervently hope for effective treatments but you should

consider the state of your daughter's health currently and what risks

you take with an unproven treatment, even with anecdoctal endorsements

such as this one.

Err on the side of caution.

But you may have read some of my posts about not wanting to do invasive

tests on my son, since I didn't see the benefit when the tests often are

inconclusive. Since he has had some progression, I am moving slowly

into those tests but it took a change to get me there mentally.

Hope all is well and goes well for you and yours.

Sue Ellen

[Guest guest]

Sue Ellen,

Now that we are becoming more informed about HBOT, we are not about to rush out and try it with our son, . Aside from the cost issue, accessing suitable facilities in Australia is a major problem.

However, from our experience, I would not place a high priority on the recomendation or non-recomendation of different theropies by doctors. If we had not gone out and done our own research, and carried out a variety of different treatments with (in some cases without our doctors blessing), I doubt if he would still be with us today.

Regards,

& Savage. (, 7yrs - complex IV mito)

Re: Hyperbaric chamber therapy

:It is interesting to think about treatments, but I see that no doctorrecommended it or even approved it. My son has enough diagnoses that Ihave seen **plenty** of cures, treatments and procedures that parentsmay swear by, but when looked at analytically, cannot be said to havecaused the improvement. There is causality and there is co-incidence. I am quite a doubter and hold by the "first do no harm" directive evenas a parent, so, while my son has a diagnosis of cerebral palsy and HBOThas had successes there, I listened to the mito doctor who explained thereasons not to experiment on my son.I know we all fervently hope for effective treatments but you shouldconsider the state of your daughter's health currently and what risksyou take with an unproven treatment, even with anecdoctal endorsementssuch as this one. Err on the side of caution. But you may have read some of my posts about not wanting to do invasivetests on my son, since I didn't see the benefit when the tests often areinconclusive. Since he has had some progression, I am moving slowlyinto those tests but it took a change to get me there mentally.Hope all is well and goes well for you and yours.Sue EllenPlease contact mito-owner with any problems or questions.

[Guest guest]

Sue Ellen,

Now that we are becoming more informed about HBOT, we are not about to rush out and try it with our son, . Aside from the cost issue, accessing suitable facilities in Australia is a major problem.

However, from our experience, I would not place a high priority on the recomendation or non-recomendation of different theropies by doctors. If we had not gone out and done our own research, and carried out a variety of different treatments with (in some cases without our doctors blessing), I doubt if he would still be with us today.

Regards,

& Savage. (, 7yrs - complex IV mito)

Re: Hyperbaric chamber therapy

:It is interesting to think about treatments, but I see that no doctorrecommended it or even approved it. My son has enough diagnoses that Ihave seen **plenty** of cures, treatments and procedures that parentsmay swear by, but when looked at analytically, cannot be said to havecaused the improvement. There is causality and there is co-incidence. I am quite a doubter and hold by the "first do no harm" directive evenas a parent, so, while my son has a diagnosis of cerebral palsy and HBOThas had successes there, I listened to the mito doctor who explained thereasons not to experiment on my son.I know we all fervently hope for effective treatments but you shouldconsider the state of your daughter's health currently and what risksyou take with an unproven treatment, even with anecdoctal endorsementssuch as this one. Err on the side of caution. But you may have read some of my posts about not wanting to do invasivetests on my son, since I didn't see the benefit when the tests often areinconclusive. Since he has had some progression, I am moving slowlyinto those tests but it took a change to get me there mentally.Hope all is well and goes well for you and yours.Sue EllenPlease contact mito-owner with any problems or questions.

[Guest guest]

Sue Ellen,

Now that we are becoming more informed about HBOT, we are not about to rush out and try it with our son, . Aside from the cost issue, accessing suitable facilities in Australia is a major problem.

However, from our experience, I would not place a high priority on the recomendation or non-recomendation of different theropies by doctors. If we had not gone out and done our own research, and carried out a variety of different treatments with (in some cases without our doctors blessing), I doubt if he would still be with us today.

Regards,

& Savage. (, 7yrs - complex IV mito)

Re: Hyperbaric chamber therapy

:It is interesting to think about treatments, but I see that no doctorrecommended it or even approved it. My son has enough diagnoses that Ihave seen **plenty** of cures, treatments and procedures that parentsmay swear by, but when looked at analytically, cannot be said to havecaused the improvement. There is causality and there is co-incidence. I am quite a doubter and hold by the "first do no harm" directive evenas a parent, so, while my son has a diagnosis of cerebral palsy and HBOThas had successes there, I listened to the mito doctor who explained thereasons not to experiment on my son.I know we all fervently hope for effective treatments but you shouldconsider the state of your daughter's health currently and what risksyou take with an unproven treatment, even with anecdoctal endorsementssuch as this one. Err on the side of caution. But you may have read some of my posts about not wanting to do invasivetests on my son, since I didn't see the benefit when the tests often areinconclusive. Since he has had some progression, I am moving slowlyinto those tests but it took a change to get me there mentally.Hope all is well and goes well for you and yours.Sue EllenPlease contact mito-owner with any problems or questions.