Re: MUMS article - HBOT mito hope

[Guest guest]

,

Thankyou for responding. I guess the issue you have raised, is one I have already thought about. You can go to all the time, trouble and expense of HBOT, but won't the progression of the 'beast' we are dealing with just catch up further down the track.

You don't have to answer this question if you don't want to, but if you had your time over again, given what you know now of the outcome, would you go through HBOT with your daughter again?

I find talking with other parents who have made a decision, generally so much more fruitful in terms of making our own decisions, then I do talking to most professionals. I guess at the end of the day, as parents, we are professionals, because we live with the issues surrounding our mito kids everyday.

Regards,

& Savage. ( 7yrs - complex IV mito)

Australia

MUMS article - HBOT mito hope>Date: Fri, 15 Nov 2002 12:19:07 +1000>>Hi all,>>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.>>>_________________________________________________________________Protect your PC - get McAfee.com VirusScan Online http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963Please contact mito-owner with any problems or questions.

[Guest guest]

and ,

I do not mind answereing ANY questions, so please ask whatever you want.

And the answer to the question would I do it again is yes. And actually if I

had the money to do it now I would. As I said before, I did not get the

results I so hoped for, but what Sam did get I am truelly thankful for.

especially the eyesight. And now when I think back on it, Sam did at that

time while we were in florida begin to prop sit for first time. She was able

to get up on her hands and knees with support at that time also. which in

turn though she has lost the hands and knee skill. but she still continues

to prop sit. When we returned home, one of her therapists did say sam was

ready for a " pony " walker and before we went, she was no where near that

point. She had began her balance reactions and protective reactions that she

exhibited none prior to it. She also became more social and didnt tremor in

fear to unfamiliar voices(that I relate to getting her eyesight). sam had

many subtle changes to the average lay person, but to me, her therapists and

close family that knows sam, they were big. I also recall the Dr. down there

asking me after one of her major improved spec scans if I was sure sam had

CP. He thought that he should be seeing more clinical improvement based on

the spec. And thats when he told us to go home and wait for the " nerves and

responses " to start connecting to the once dead brain tissue that is now

perfusing. But, still waiting. And that is where I fell mito plays in.

However, the question I have is if I did not do these hbot, what would her

disease process be at now? Would she still be here? Did the hbot slow

disease progression? The other strange thing is is that this Dr. down in

Florida also started her on a variety of vitamins. Some in which are vitC,

vitE, coQ10, and I believe ribo. So is that why I saw improvement in Sam,

not knowing at that time she had mito and recieved a partial mito coctail?

Dont know. But to some it all up, yes I would repeat it again, even knowing

her disease is mito, and not CP. Any other questions, please ask.

>

>Reply-To: Mito

>To: <Mito >

>Subject: Re: MUMS article - HBOT mito hope

>Date: Sat, 16 Nov 2002 05:44:14 +1000

>

>,

>

>Thankyou for responding. I guess the issue you have raised, is one I have

>already thought about. You can go to all the time, trouble and expense of

>HBOT, but won't the progression of the 'beast' we are dealing with just

>catch up further down the track.

>

>You don't have to answer this question if you don't want to, but if you had

>your time over again, given what you know now of the outcome, would you go

>through HBOT with your daughter again?

>

>I find talking with other parents who have made a decision, generally so

>much more fruitful in terms of making our own decisions, then I do talking

>to most professionals. I guess at the end of the day, as parents, we are

>professionals, because we live with the issues surrounding our mito kids

>everyday.

>

>Regards,

>

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

>

>Australia

> MUMS article - HBOT mito hope

> >Date: Fri, 15 Nov 2002 12:19:07 +1000

> >

> >Hi all,

> >

> >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.

> >

> >

> >

>

>

> _________________________________________________________________

> Protect your PC - get McAfee.com VirusScan Online

> http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963

>

>

> Please contact mito-owner with any problems or

>questions.

>

>

[Guest guest]

At 7 years of age, we have never heard him speak, so we have a limited understanding of his thought, feelings - what goes on in that head of his.

Hi ,

Has had any access to an augmentative communication device? My daughter uses a high tech device that looks sort of like a laptop computer. It has been enormously helpful in helping us to understand her.

Maggie

[Guest guest]

We have been instructed to look inot an eval for an assistive device for Cameron also

Good luck with this, . The difference it makes for kids can be really extraordinary.

Maggie

[Guest guest]

,

I guess the point you made in the first note that caught my attention the most was no vocabulary at 2 years to a 50 word vocabulary. If a child is not showing any sign of speach at 2, then the likelihood that this would have developed without the HBOT are not great. It must have been great to converse with your daughter, and to get some insight into what was going on in her thoughts, feelings etc.

has only spoken a few "mums" and "dads" when he was about 18 months. He had a major reaction to his 18 month vaccinations, lost the limited vocabulary that was beginning to develop and has never regained it. At 7 years of age, we have never heard him speak, so we have a limited understanding of his thought, feelings - what goes on in that head of his. It would be amazing if he were to develop some speach skills through HBOT.

Regards,

& Savage.

MUMS article - HBOT mito hope> >Date: Fri, 15 Nov 2002 12:19:07 +1000> >> >Hi all,> >> >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.> >> >> >>>> _________________________________________________________________> Protect your PC - get McAfee.com VirusScan Online> http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963>>> Please contact mito-owner with any problems or >questions.>>

[Guest guest]

We have been instructed to look inot an eval for an assistive device for Cameron also. He could use a way to communicate to us other than taking us by the hand and showing us or using his limited signing.

-----Original Message-----From: orrmullane@... Sent: Saturday, November 16, 2002 12:12 PMTo: Mito Subject: Re: MUMS article - HBOT mito hope

At 7 years of age, we have never heard him speak, so we have a limited understanding of his thought, feelings - what goes on in that head of his.Hi ,Has had any access to an augmentative communication device? My daughter uses a high tech device that looks sort of like a laptop computer. It has been enormously helpful in helping us to understand her.Maggie Please contact mito-owner with any problems or questions.

[Guest guest]

Maggie,

has very limited control over where his hands are - by that I mean purposeful movement, and certainly very little fine motor skill with regard a keyboard or touching a particular part of a screen. We have mentioned this issue (augmentative communication device) at school meetings, and they feel he would have very limited if any ability to use one.

Having said that, he has an ability to scratch behind his ear, or behind his knee, or rub his eye, if the need arises. It is a strange kind of paradox.

Regards,

& Savage.

Re: MUMS article - HBOT mito hope

At 7 years of age, we have never heard him speak, so we have a limited understanding of his thought, feelings - what goes on in that head of his.Hi ,Has had any access to an augmentative communication device? My daughter uses a high tech device that looks sort of like a laptop computer. It has been enormously helpful in helping us to understand her.Maggie Please contact mito-owner with any problems or questions.