Re: Question - Lactic Acid

[Guest guest]

Hairston-

My son Nolan, who is 4 1/2, experiences the blueness around the mouth. His

muscle biopsy results were that he has rare skeletal muscle atrophy. His

torso is weakening and he relies on his legs for muscle. His arches have

fallen quite a bit, they were corrected a couple of years ago with cookies in

his shoes. This muscle loss appears more extensive as it is very visible to

the eye.

His frozen biopsy was sent to Cleveland, I wish I knew then about the frozen

vs. fresh. It came back fine, although his lactic acid was very elevated in

his CSF and blood.

What was the progession stage with Kennedy? Did she gradually turn more blue?

We have an appointment with his neuro next week, he will be starting the

vitamins this week (after some more blood tests tomorrow). I hope the neuro

will prescribe something for sleep as we are utterly exhausted.

Any input would be appreciated. Thank you.

Michele-Mom to Nolan-undiagnosed mito and Alana-typical 3 1/2 year old

[Guest guest]

Hairston-

My son Nolan, who is 4 1/2, experiences the blueness around the mouth. His

muscle biopsy results were that he has rare skeletal muscle atrophy. His

torso is weakening and he relies on his legs for muscle. His arches have

fallen quite a bit, they were corrected a couple of years ago with cookies in

his shoes. This muscle loss appears more extensive as it is very visible to

the eye.

His frozen biopsy was sent to Cleveland, I wish I knew then about the frozen

vs. fresh. It came back fine, although his lactic acid was very elevated in

his CSF and blood.

What was the progession stage with Kennedy? Did she gradually turn more blue?

We have an appointment with his neuro next week, he will be starting the

vitamins this week (after some more blood tests tomorrow). I hope the neuro

will prescribe something for sleep as we are utterly exhausted.

Any input would be appreciated. Thank you.

Michele-Mom to Nolan-undiagnosed mito and Alana-typical 3 1/2 year old

[Guest guest]

,

We, too, have had alot of problem with blueness around the mouth, in the

extremities, and mottling up her arms & legs. Our docs have determined there

is nothing structurally wrong with Lexi['s heart, it's just that her mito

problems don't let her produce enough energy to keep her heart at a

consistent rate. She's fine as long as nothing taxes her system, but as soon

as something (ANYTHING) causes stress to her body, she begins to turn blue

(usually while she's also haveing a seizure, which is really fun). WE have

also been told that we will have to monitor her heart every 6-12 months

because even though there is nothing wrong with it now, the mito problems can

eventually weaken her heart and then other problems can surface. Just

another side of this multi-faceted Pandora's box!

ruth

[Guest guest]

Hello, . Sorry to hear of Nolan's troubles. We will help in any

way we can.

Kennedy was normal at birth but experienced a general failure to thrive at

3.5 months. She was smiling but not holding her head up very well. She

stopped growing at four months and we put her on high protein formula. It's

a long journey from there to eight months but she progressively weakened in

nursing and then took an exceptionally long time to take her bottle. At

eight months she began to be very, very restless during sleep. We began to

notice her getting a blue tinge around her mouth and fingertips. It was

fleeting - never lasted more than a few seconds but we failed to realize how

significant it actually was. Shortly afterward she caught some sort of

minor virus, but she had been at the precipice (unknown to us) for weeks and

the minor fever pushed her over the edge. She experienced total respiratory

failure and only her Mom's lightning dash for the ER saved her. Over the

course of the next few weeks we (with the help of an army of friends who

were physicians) pieced together the truth. She had been gradually

degrading in skeletal muscle strength (due to poor energy transport

mechanism), with her diaphragm being the worst damaged. When she fed, her

weakness caused her to struggle to swallow and breath at the same time,

hence slowness. She never choked or was nauseated so we didn't catch it.

When she slept she was experiencing apnea problems hence the restlessness.

When she had the bluish tinge was when she was fatigued. So the little

chick was struggling to breathe and we never knew it. Looking back, we

should have seen it earlier. But I think all parents want to believe that

everything is really going to be all right - that it will work out. It

didn't, and we were never able to wean her from intubation. Sixteen months

later, we have an oxygen concatenator at home and have had great success in

getting her off the vent. We do two trials per day, and each week we add

ten minutes. She has worked up to nearly ninety minutes off the vent, with

the assistance of oxygen. But that precipice keeps getting us, and every

time she catches a cold or something she loses ground. So it's pretty much

a continuing training exercise - we continue it keeps up her strength so

that we can take her off the vent long enough for transport upstairs and

downstairs, in and out of the truck, etc. Two steps forward, two steps

back, repeat.....

I don't know if any of this will help you - we will gladly provide whatever

detail you need. Best wishes for the Nolan dude -

Hairston

Kennedy's Dad

Mito CIII, vent, g-tube

Re: Question - Lactic Acid

> From: MichSull@...

>

> Hairston-

> My son Nolan, who is 4 1/2, experiences the blueness around the mouth. His

> muscle biopsy results were that he has rare skeletal muscle atrophy. His

> torso is weakening and he relies on his legs for muscle. His arches have

> fallen quite a bit, they were corrected a couple of years ago with cookies

in

> his shoes. This muscle loss appears more extensive as it is very visible

to

> the eye.

> His frozen biopsy was sent to Cleveland, I wish I knew then about the

frozen

> vs. fresh. It came back fine, although his lactic acid was very elevated

in

> his CSF and blood.

> What was the progession stage with Kennedy? Did she gradually turn more

blue?

> We have an appointment with his neuro next week, he will be starting the

> vitamins this week (after some more blood tests tomorrow). I hope the

neuro

> will prescribe something for sleep as we are utterly exhausted.

> Any input would be appreciated. Thank you.

> Michele-Mom to Nolan-undiagnosed mito and Alana-typical 3 1/2 year old

>

> > Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

>

[Guest guest]

Hello, . Sorry to hear of Nolan's troubles. We will help in any

way we can.

Kennedy was normal at birth but experienced a general failure to thrive at

3.5 months. She was smiling but not holding her head up very well. She

stopped growing at four months and we put her on high protein formula. It's

a long journey from there to eight months but she progressively weakened in

nursing and then took an exceptionally long time to take her bottle. At

eight months she began to be very, very restless during sleep. We began to

notice her getting a blue tinge around her mouth and fingertips. It was

fleeting - never lasted more than a few seconds but we failed to realize how

significant it actually was. Shortly afterward she caught some sort of

minor virus, but she had been at the precipice (unknown to us) for weeks and

the minor fever pushed her over the edge. She experienced total respiratory

failure and only her Mom's lightning dash for the ER saved her. Over the

course of the next few weeks we (with the help of an army of friends who

were physicians) pieced together the truth. She had been gradually

degrading in skeletal muscle strength (due to poor energy transport

mechanism), with her diaphragm being the worst damaged. When she fed, her

weakness caused her to struggle to swallow and breath at the same time,

hence slowness. She never choked or was nauseated so we didn't catch it.

When she slept she was experiencing apnea problems hence the restlessness.

When she had the bluish tinge was when she was fatigued. So the little

chick was struggling to breathe and we never knew it. Looking back, we

should have seen it earlier. But I think all parents want to believe that

everything is really going to be all right - that it will work out. It

didn't, and we were never able to wean her from intubation. Sixteen months

later, we have an oxygen concatenator at home and have had great success in

getting her off the vent. We do two trials per day, and each week we add

ten minutes. She has worked up to nearly ninety minutes off the vent, with

the assistance of oxygen. But that precipice keeps getting us, and every

time she catches a cold or something she loses ground. So it's pretty much

a continuing training exercise - we continue it keeps up her strength so

that we can take her off the vent long enough for transport upstairs and

downstairs, in and out of the truck, etc. Two steps forward, two steps

back, repeat.....

I don't know if any of this will help you - we will gladly provide whatever

detail you need. Best wishes for the Nolan dude -

Hairston

Kennedy's Dad

Mito CIII, vent, g-tube

Re: Question - Lactic Acid

> From: MichSull@...

>

> Hairston-

> My son Nolan, who is 4 1/2, experiences the blueness around the mouth. His

> muscle biopsy results were that he has rare skeletal muscle atrophy. His

> torso is weakening and he relies on his legs for muscle. His arches have

> fallen quite a bit, they were corrected a couple of years ago with cookies

in

> his shoes. This muscle loss appears more extensive as it is very visible

to

> the eye.

> His frozen biopsy was sent to Cleveland, I wish I knew then about the

frozen

> vs. fresh. It came back fine, although his lactic acid was very elevated

in

> his CSF and blood.

> What was the progession stage with Kennedy? Did she gradually turn more

blue?

> We have an appointment with his neuro next week, he will be starting the

> vitamins this week (after some more blood tests tomorrow). I hope the

neuro

> will prescribe something for sleep as we are utterly exhausted.

> Any input would be appreciated. Thank you.

> Michele-Mom to Nolan-undiagnosed mito and Alana-typical 3 1/2 year old

>

> > Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

>

[Guest guest]

Hello, . Sorry to hear of Nolan's troubles. We will help in any

way we can.

Kennedy was normal at birth but experienced a general failure to thrive at

3.5 months. She was smiling but not holding her head up very well. She

stopped growing at four months and we put her on high protein formula. It's

a long journey from there to eight months but she progressively weakened in

nursing and then took an exceptionally long time to take her bottle. At

eight months she began to be very, very restless during sleep. We began to

notice her getting a blue tinge around her mouth and fingertips. It was

fleeting - never lasted more than a few seconds but we failed to realize how

significant it actually was. Shortly afterward she caught some sort of

minor virus, but she had been at the precipice (unknown to us) for weeks and

the minor fever pushed her over the edge. She experienced total respiratory

failure and only her Mom's lightning dash for the ER saved her. Over the

course of the next few weeks we (with the help of an army of friends who

were physicians) pieced together the truth. She had been gradually

degrading in skeletal muscle strength (due to poor energy transport

mechanism), with her diaphragm being the worst damaged. When she fed, her

weakness caused her to struggle to swallow and breath at the same time,

hence slowness. She never choked or was nauseated so we didn't catch it.

When she slept she was experiencing apnea problems hence the restlessness.

When she had the bluish tinge was when she was fatigued. So the little

chick was struggling to breathe and we never knew it. Looking back, we

should have seen it earlier. But I think all parents want to believe that

everything is really going to be all right - that it will work out. It

didn't, and we were never able to wean her from intubation. Sixteen months

later, we have an oxygen concatenator at home and have had great success in

getting her off the vent. We do two trials per day, and each week we add

ten minutes. She has worked up to nearly ninety minutes off the vent, with

the assistance of oxygen. But that precipice keeps getting us, and every

time she catches a cold or something she loses ground. So it's pretty much

a continuing training exercise - we continue it keeps up her strength so

that we can take her off the vent long enough for transport upstairs and

downstairs, in and out of the truck, etc. Two steps forward, two steps

back, repeat.....

I don't know if any of this will help you - we will gladly provide whatever

detail you need. Best wishes for the Nolan dude -

Hairston

Kennedy's Dad

Mito CIII, vent, g-tube

Re: Question - Lactic Acid

> From: MichSull@...

>

> Hairston-

> My son Nolan, who is 4 1/2, experiences the blueness around the mouth. His

> muscle biopsy results were that he has rare skeletal muscle atrophy. His

> torso is weakening and he relies on his legs for muscle. His arches have

> fallen quite a bit, they were corrected a couple of years ago with cookies

in

> his shoes. This muscle loss appears more extensive as it is very visible

to

> the eye.

> His frozen biopsy was sent to Cleveland, I wish I knew then about the

frozen

> vs. fresh. It came back fine, although his lactic acid was very elevated

in

> his CSF and blood.

> What was the progession stage with Kennedy? Did she gradually turn more

blue?

> We have an appointment with his neuro next week, he will be starting the

> vitamins this week (after some more blood tests tomorrow). I hope the

neuro

> will prescribe something for sleep as we are utterly exhausted.

> Any input would be appreciated. Thank you.

> Michele-Mom to Nolan-undiagnosed mito and Alana-typical 3 1/2 year old

>

> > Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

>

[Guest guest]

Hairston-

Thanks for the response. Alot of things are clicking in my brain now as it

has been a long journey for us to even get a little info from the Dr.'s. You

are very lucky to have doctor friends.

I read 's story, know a little about Kennedy, and have read the Hirsh

site and have been in contact with Dave Bonney.

Nolan's history is LONG and complex but his infancy sounds familiar to some

extent. It used to take me at least an hour per feeding as he had a weak

suck. He was switched from breast milk, a slew of formulas, and then to

Pregestimil (sp?)-$25.00 a can-wow was that costly. He had severe colitis at

3 months.

Nolan also has turned blue at 5 weeks due to broncilitis and was in an O2

tent for 4 days. Currently, he is " croupy " and I am sure he will end up at

the pedi's soon as he is allergic to sorbitol, which is in cough medicine. I

am sure something is brewing. His blueness was quite substantial Sunday but

his O2 rate never dropped below 93 ( I am sure it was lower but he is so

tactically defensive, we can only test his O2 level when he is sleeping.)

He also became a floppy baby around 5 months.

Now the additional hell we have been through is that we were accused of

Munchausen's by proxy!!!!! I know they know now I am done with my verbal

lashing of the " professionals " and now I will just go for the jugular!!

With the skeletal atrophy, you say it it is due to poor energy transport-part

of Complex III? Nolan has had 3, maybe 4 regressions in muscle strength. He

becomes quite " colorful " and his arches are fallen quite a bit. This, I take

it, will get worse, would love to know where we go from here.

Has Kennedy's liver been affected? Nolan was jaundiced for 4 months and still

is a tinge of yellow. The repeat LFT were sent out yesterday. Now, the

waiting game we are all so good at. It took us 9 months for his muscle biopsy

results-they were lost!!!!

I really wish I knew then about fresh vs. frozen as I am contemplating

Atlanta or Cleveland and will know more in a week or 2 from results and Dr.'s

appts.

We are moving to a ranch 2 streets from the beach to see if that helps

Nolan's breathing and overall status. We need to limit beach time as he gets

quite colorful when cold but hope the ocean air helps. We think a ranch will

save our backs from carrying Nolan up and down the stairs.

I know I am scattered, but Nolan has not slept well his whole life, mainly

due to GI issues.

Thanks. Michele

[Guest guest]

Hairston-

Thanks for the response. Alot of things are clicking in my brain now as it

has been a long journey for us to even get a little info from the Dr.'s. You

are very lucky to have doctor friends.

I read 's story, know a little about Kennedy, and have read the Hirsh

site and have been in contact with Dave Bonney.

Nolan's history is LONG and complex but his infancy sounds familiar to some

extent. It used to take me at least an hour per feeding as he had a weak

suck. He was switched from breast milk, a slew of formulas, and then to

Pregestimil (sp?)-$25.00 a can-wow was that costly. He had severe colitis at

3 months.

Nolan also has turned blue at 5 weeks due to broncilitis and was in an O2

tent for 4 days. Currently, he is " croupy " and I am sure he will end up at

the pedi's soon as he is allergic to sorbitol, which is in cough medicine. I

am sure something is brewing. His blueness was quite substantial Sunday but

his O2 rate never dropped below 93 ( I am sure it was lower but he is so

tactically defensive, we can only test his O2 level when he is sleeping.)

He also became a floppy baby around 5 months.

Now the additional hell we have been through is that we were accused of

Munchausen's by proxy!!!!! I know they know now I am done with my verbal

lashing of the " professionals " and now I will just go for the jugular!!

With the skeletal atrophy, you say it it is due to poor energy transport-part

of Complex III? Nolan has had 3, maybe 4 regressions in muscle strength. He

becomes quite " colorful " and his arches are fallen quite a bit. This, I take

it, will get worse, would love to know where we go from here.

Has Kennedy's liver been affected? Nolan was jaundiced for 4 months and still

is a tinge of yellow. The repeat LFT were sent out yesterday. Now, the

waiting game we are all so good at. It took us 9 months for his muscle biopsy

results-they were lost!!!!

I really wish I knew then about fresh vs. frozen as I am contemplating

Atlanta or Cleveland and will know more in a week or 2 from results and Dr.'s

appts.

We are moving to a ranch 2 streets from the beach to see if that helps

Nolan's breathing and overall status. We need to limit beach time as he gets

quite colorful when cold but hope the ocean air helps. We think a ranch will

save our backs from carrying Nolan up and down the stairs.

I know I am scattered, but Nolan has not slept well his whole life, mainly

due to GI issues.

Thanks. Michele

[Guest guest]

Hairston-

Thanks for the response. Alot of things are clicking in my brain now as it

has been a long journey for us to even get a little info from the Dr.'s. You

are very lucky to have doctor friends.

I read 's story, know a little about Kennedy, and have read the Hirsh

site and have been in contact with Dave Bonney.

Nolan's history is LONG and complex but his infancy sounds familiar to some

extent. It used to take me at least an hour per feeding as he had a weak

suck. He was switched from breast milk, a slew of formulas, and then to

Pregestimil (sp?)-$25.00 a can-wow was that costly. He had severe colitis at

3 months.

Nolan also has turned blue at 5 weeks due to broncilitis and was in an O2

tent for 4 days. Currently, he is " croupy " and I am sure he will end up at

the pedi's soon as he is allergic to sorbitol, which is in cough medicine. I

am sure something is brewing. His blueness was quite substantial Sunday but

his O2 rate never dropped below 93 ( I am sure it was lower but he is so

tactically defensive, we can only test his O2 level when he is sleeping.)

He also became a floppy baby around 5 months.

Now the additional hell we have been through is that we were accused of

Munchausen's by proxy!!!!! I know they know now I am done with my verbal

lashing of the " professionals " and now I will just go for the jugular!!

With the skeletal atrophy, you say it it is due to poor energy transport-part

of Complex III? Nolan has had 3, maybe 4 regressions in muscle strength. He

becomes quite " colorful " and his arches are fallen quite a bit. This, I take

it, will get worse, would love to know where we go from here.

Has Kennedy's liver been affected? Nolan was jaundiced for 4 months and still

is a tinge of yellow. The repeat LFT were sent out yesterday. Now, the

waiting game we are all so good at. It took us 9 months for his muscle biopsy

results-they were lost!!!!

I really wish I knew then about fresh vs. frozen as I am contemplating

Atlanta or Cleveland and will know more in a week or 2 from results and Dr.'s

appts.

We are moving to a ranch 2 streets from the beach to see if that helps

Nolan's breathing and overall status. We need to limit beach time as he gets

quite colorful when cold but hope the ocean air helps. We think a ranch will

save our backs from carrying Nolan up and down the stairs.

I know I am scattered, but Nolan has not slept well his whole life, mainly

due to GI issues.

Thanks. Michele

[Guest guest]

Michele,

I, too, know the horrors of being accused of Munchausens. Nothing can even

compare to the damage that this did to me. I'm hopeful that the so-called

" professionals " will soon get their professional heads out of their

professional (* & ^@#$* & #$' 's and figure out that NOTHING could be further

from the truth.

I'm keeping you in my thoughts.

ruth

[Guest guest]

Michele,

I, too, know the horrors of being accused of Munchausens. Nothing can even

compare to the damage that this did to me. I'm hopeful that the so-called

" professionals " will soon get their professional heads out of their

professional (* & ^@#$* & #$' 's and figure out that NOTHING could be further

from the truth.

I'm keeping you in my thoughts.

ruth

[Guest guest]

Michele,

I, too, know the horrors of being accused of Munchausens. Nothing can even

compare to the damage that this did to me. I'm hopeful that the so-called

" professionals " will soon get their professional heads out of their

professional (* & ^@#$* & #$' 's and figure out that NOTHING could be further

from the truth.

I'm keeping you in my thoughts.

ruth

[Guest guest]

Ruth, are you the same Ruth on the Lances list?This is , Jonah's mom

and Jonah has a mito complex 1 and other things and we are now fighting a

msbp charge.Jonah is still not with us and it is just killing us.We almost

lose him over and over by disease and now we have lost him for a ridiculous

charge,because we threatened to sue the doctor handling his care.He has yet

to be seen bu a mito specialist and we can't do it as he is not with us

now.We are wiped out emotionally and financially because of this,and Jonah

is confused as to why he only sees MOm and Dad and big brother for 3 hours a

day.We are just devastated.

>From: Hilandgang@...

>Reply-To: Mitoonelist

>To: Mitoonelist

>Subject: Re: Question - Lactic Acid

>Date: Wed, 29 Sep 1999 00:24:48 EDT

>

>From: Hilandgang@...

>

>Michele,

>I, too, know the horrors of being accused of Munchausens. Nothing can even

>compare to the damage that this did to me. I'm hopeful that the so-called

> " professionals " will soon get their professional heads out of their

>professional (* & ^@#$* & #$' 's and figure out that NOTHING could be further

>from the truth.

>

>I'm keeping you in my thoughts.

>

>ruth

>

>>Brought to you by www.imdn.org - an on-line support group for those

>affected by mitochondrial disease.

[Guest guest]

Ruth, are you the same Ruth on the Lances list?This is , Jonah's mom

and Jonah has a mito complex 1 and other things and we are now fighting a

msbp charge.Jonah is still not with us and it is just killing us.We almost

lose him over and over by disease and now we have lost him for a ridiculous

charge,because we threatened to sue the doctor handling his care.He has yet

to be seen bu a mito specialist and we can't do it as he is not with us

now.We are wiped out emotionally and financially because of this,and Jonah

is confused as to why he only sees MOm and Dad and big brother for 3 hours a

day.We are just devastated.

>From: Hilandgang@...

>Reply-To: Mitoonelist

>To: Mitoonelist

>Subject: Re: Question - Lactic Acid

>Date: Wed, 29 Sep 1999 00:24:48 EDT

>

>From: Hilandgang@...

>

>Michele,

>I, too, know the horrors of being accused of Munchausens. Nothing can even

>compare to the damage that this did to me. I'm hopeful that the so-called

> " professionals " will soon get their professional heads out of their

>professional (* & ^@#$* & #$' 's and figure out that NOTHING could be further

>from the truth.

>

>I'm keeping you in my thoughts.

>

>ruth

>

>>Brought to you by www.imdn.org - an on-line support group for those

>affected by mitochondrial disease.

[Guest guest]

Ruth, are you the same Ruth on the Lances list?This is , Jonah's mom

and Jonah has a mito complex 1 and other things and we are now fighting a

msbp charge.Jonah is still not with us and it is just killing us.We almost

lose him over and over by disease and now we have lost him for a ridiculous

charge,because we threatened to sue the doctor handling his care.He has yet

to be seen bu a mito specialist and we can't do it as he is not with us

now.We are wiped out emotionally and financially because of this,and Jonah

is confused as to why he only sees MOm and Dad and big brother for 3 hours a

day.We are just devastated.

>From: Hilandgang@...

>Reply-To: Mitoonelist

>To: Mitoonelist

>Subject: Re: Question - Lactic Acid

>Date: Wed, 29 Sep 1999 00:24:48 EDT

>

>From: Hilandgang@...

>

>Michele,

>I, too, know the horrors of being accused of Munchausens. Nothing can even

>compare to the damage that this did to me. I'm hopeful that the so-called

> " professionals " will soon get their professional heads out of their

>professional (* & ^@#$* & #$' 's and figure out that NOTHING could be further

>from the truth.

>

>I'm keeping you in my thoughts.

>

>ruth

>

>>Brought to you by www.imdn.org - an on-line support group for those

>affected by mitochondrial disease.

[Guest guest]

And my heart goes out to you.Michele

[Guest guest]

-

Have you heard of MAMA-Mothers Accused of Munchausen's-The web site is under

MAMA-a girl named from Mississippi, the founder, may be able to help

you. I know what a heinous accusation this is, fortunately, Nolan was never

taken from us. I have made scenes and threats LOUDLY-and after many

accusations, nothing was formally charged.

Good luck.

Michele-Mom to Nolan-4 1/2 year old non-diagnosed mito and Alana-3 1/2 typical

[Guest guest]

-

Have you heard of MAMA-Mothers Accused of Munchausen's-The web site is under

MAMA-a girl named from Mississippi, the founder, may be able to help

you. I know what a heinous accusation this is, fortunately, Nolan was never

taken from us. I have made scenes and threats LOUDLY-and after many

accusations, nothing was formally charged.

Good luck.

Michele-Mom to Nolan-4 1/2 year old non-diagnosed mito and Alana-3 1/2 typical

[Guest guest]

Hi ,

I'm not on the Lance's list (don't know that one) but you and I have shared

before about the miseries of MSBP. I was so hopeful that things were going

to take a turn for the better for your little family. I'll keep the positive

thoughts flowing....

If there are at least three of us on this list who have been accused, and I

know of one other family of a kid with mito problems accused, how many others

are out there?!?! I know I've been on this soap box before, but it hits at

my most sensitive nerve (the Mom Nerve--not sure where that's located

anatomically, but it's DEFINATELY there!!!

ruth

[Guest guest]

Hi, Gail

The new drug is called dca thats all we get to know.

I let everyone know if it works.

F.

[Guest guest]

Hi, Gail

The new drug is called dca thats all we get to know.

I let everyone know if it works.

F.

[Guest guest]

thanks - keeping our fingers crossed... Gail

PFlicek@... wrote:

>

> From: PFlicek@...

>

> Hi, Gail

> The new drug is called dca thats all we get to know.

> I let everyone know if it works.

> F.

>

> > Brought to you by www.imdn.org - an on-line support group for those affected

by mitochondrial disease.

[Guest guest]

, Have you thought of calling 60 min. news program on this? It seems

like this is just the sort of story they would do and not only that it

always impresses me that they seem to have revenues or maybe it is just the

coverage that seems to change things for some of the stories they present?

It really sounds like most definitly the AMA is in on this with this Dr. you

were sueing. S.

Re: Question - Lactic Acid

>>Date: Wed, 29 Sep 1999 00:24:48 EDT

>>

>>From: Hilandgang@...

>>

>>Michele,

>>I, too, know the horrors of being accused of Munchausens. Nothing can

even

>>compare to the damage that this did to me. I'm hopeful that the so-called

>> " professionals " will soon get their professional heads out of their

>>professional (* & ^@#$* & #$' 's and figure out that NOTHING could be further

>>from the truth.

>>

>>I'm keeping you in my thoughts.

>>

>>ruth

>>

>>>Brought to you by www.imdn.org - an on-line support group for those

>>affected by mitochondrial disease.

>

>>Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

>

[Guest guest]

No,I had not considered the media really,we have just been reeling from the

whole ordeal.We were such private people before and now it seems our whole

life is on display as it is,I am not sure what to do.I don't know if going

public would do more harm then good.We just want it to be over.I know there

is a lot of media coverage on rhis issue in the US, but not really a lot

here in Canada.In fact only 5 cases like this have gone to trial here.We

just have to keep praying the truth will prevail and Jonah will come home.

>

>Reply-To: Mitoonelist

>To: <Mitoonelist>

>Subject: Re: Question - Lactic Acid

>Date: Thu, 7 Oct 1999 11:23:35 -0700

>

>, Have you thought of calling 60 min. news program on this? It seems

>like this is just the sort of story they would do and not only that it

>always impresses me that they seem to have revenues or maybe it is just the

>coverage that seems to change things for some of the stories they present?

>It really sounds like most definitly the AMA is in on this with this Dr.

>you

>were sueing. S.

>

> Re: Question - Lactic Acid

> >>Date: Wed, 29 Sep 1999 00:24:48 EDT

> >>

> >>From: Hilandgang@...

> >>

> >>Michele,

> >>I, too, know the horrors of being accused of Munchausens. Nothing can

>even

> >>compare to the damage that this did to me. I'm hopeful that the

>so-called

> >> " professionals " will soon get their professional heads out of their

> >>professional (* & ^@#$* & #$' 's and figure out that NOTHING could be

>further

> >>from the truth.

> >>

> >>I'm keeping you in my thoughts.

> >>

> >>ruth

> >>

> >>>Brought to you by www.imdn.org - an on-line support group for those

> >>affected by mitochondrial disease.

> >

> >>Brought to you by www.imdn.org - an on-line support group for those

>affected by mitochondrial disease.

> >

>

>

>------------------------------------------------------------------------

>Brought to you by www.imdn.org - an on-line support group for those

>affected by mitochondrial disease.

><< text3.html >>

[Guest guest]

,

I am so sorry to hear about the Hell you are going through. I wish I could

offer some sage words of wisdom but I am not sure that anyone who has not

gone thru this could even imagine the pain you are in. I will tell you that I

will be praying for you and your family and hope that your son is returned to

his Mommy and Daddy.

and Complex II-III