Hi Terri!

[Guest guest]

In a message dated 11/15/99 2:51:21 PM Pacific Standard Time,

SDidinsky@... writes:

<< Clayton does

not have Leighs but is responding well to the cocktail. He sees Dr. kelley

>>

Sharon,

My question is does dr. Kelley adjust the dose of the supplements per

child or are they standard, like 200mg CoQ, 100mg lipoic acid........and so

on?

[Guest guest]

In a message dated 11/15/99 8:32:12 PM Eastern Standard Time,

Dillr@... writes:

<< My question is does dr. Kelley adjust the dose of the supplements per

child or are they standard, like 200mg CoQ, 100mg lipoic acid........and so

on?

>>

He does adjust them I believe. I do not know the exact amounts of each

vitamin Clayton takes becuase Dr. Kelley gives me a prescription and I get it

compounded so he gets the vitamins all together so I am not putting 6

different things thru his g-tube. Makes life easier and I found a wonderful

local pharmacist who makes it for me.

Love,

Sharon

[Guest guest]

In a message dated 11/15/99 8:32:12 PM Eastern Standard Time,

Dillr@... writes:

<< My question is does dr. Kelley adjust the dose of the supplements per

child or are they standard, like 200mg CoQ, 100mg lipoic acid........and so

on?

>>

He does adjust them I believe. I do not know the exact amounts of each

vitamin Clayton takes becuase Dr. Kelley gives me a prescription and I get it

compounded so he gets the vitamins all together so I am not putting 6

different things thru his g-tube. Makes life easier and I found a wonderful

local pharmacist who makes it for me.

Love,

Sharon

[Guest guest]

In a message dated 11/15/99 8:32:12 PM Eastern Standard Time,

Dillr@... writes:

<< My question is does dr. Kelley adjust the dose of the supplements per

child or are they standard, like 200mg CoQ, 100mg lipoic acid........and so

on?

>>

He does adjust them I believe. I do not know the exact amounts of each

vitamin Clayton takes becuase Dr. Kelley gives me a prescription and I get it

compounded so he gets the vitamins all together so I am not putting 6

different things thru his g-tube. Makes life easier and I found a wonderful

local pharmacist who makes it for me.

Love,

Sharon

[Guest guest]

Dr. Kelley said that the vitamin cocktail is standard practice in mito

disorders. He told me that all

doctors are prescribing...he did not make it up, it is common knowledge.

Morning sickness is pretty awful. Craving Hamburgers!!! MMMM....

Terri Mason wrote:

>

>

> ,

>

> Glad to hear about the test results! Carl's lab results have always been

> normal as well. It was definitely frustrating when we were still looking

> for a diagnosis so I know what you mean!

>

> As far as what Dr. Kelley is saying about Leigh's patients, I do admit that

> I have a couple of problems. It's not that I doubt Carl could live into his

> twenties because honestly, Carl is doing very well. In fact Carl is

> healthier now than he has ever been - with the exception of neurologically.

> The only area in which he continually and consistently deteriorates is his

> central nervous system. So, if we could find something to halt that

> particular deterioration (I'm still hoping for Uridine, but I'm starting to

> think that trial is never going to happen!) then Carl could conceivably live

> quite well for quite a while.

>

> However, the problem I have is that if Dr. Kelley is so sure that this

> " cocktail " is producing these kinds of results, why doesn't anybody else

> know about it? Why hasn't he published something? Why won't he say what's

> in it? I know why he wouldn't want to give medical advice to people who

> aren't his patients, but if this is so great why isn't he at least telling

> all the other doctors so that they know to get their kids with Leigh's on it

> immediately? What about all those parents of kids with Leigh's who are

> given the traditional prognosis and told there is nothing to do? Carl's

> metabolic doc is pretty good and although he's not a mito expert by any

> means, he does have access to a lot of mito experts, including Dr. Kelley.

> Why hasn't doctor Kelley at least shared this cocktail and his glorious

> results with the professinal internet groups (of which he and Carl's

> metabolic doc are both members)?

>

> It's not that I don't think Dr. Kelley is a wonderful doctor, because I have

> heard nothing but wonderful things about him. BUT, doesn't it seem a little

> selfish that he isn't making this better known so that more kids have a

> chance of benefiting?

>

> Terri

>

> P.S. How's the morning sickness? Craving anything weird yet? :-)

>

> >

> >Reply-To: Mitoonelist

> >To: Mitoonelist

> >Subject: Hi Terri!

> >Date: Sun, 14 Nov 1999 10:01:13 -0800

> >

> >

> >Hi Terri!

> >

> >Just wanted to say hello and tell you about my conversation with Dr. Kelley

> >on Friday (he actually called

> >me at 9pm on a Friday night)!

> >

> >He told me that 's new organic acid profile, both mid-day and fasting,

> >was absolutely normal. No

> >ketosis, no nothing. This is good in some ways, but it leads us no closer

> >to the answer. He said that it

> >is possible that, if has a mito disorder, that it is just confined to

> >the nervous system and that it

> >won't show up in body fluids or muscle tissue. He also said that there is

> >no lactic acidosis. We are

> >still waiting on blood we had taken last week. So far we have back normal

> >Vit. D, B12 and Zinc. Normal

> >ammonia. Normal alphafetoprotein. The only thing that came back weird was

> >his cholesterol: 220! Wow.

> >The nurse said it is consistent with hyperlipoproteinemia Type IIa, which

> >is a familial cholesterol

> >metabolism problem. This doesn't surprise me because my side of the family

> >has naturally high

> >cholesterol. Dr. Kelley says this is unrelated to whatever else is going

> >on.

> >

> >Anyway, remember when you said that the only people you heard of with

> >Leigh's lived to mid-childhood?

> >Well, not Dr. Kelley's patients. He has childhood onset Leigh's patients

> >who are in their twenties and

> >doing wonderfully! He said that the most important thing to do for kids

> >with Leigh's is to get them on

> >the vitamin coctail that he prescribes which contains 6 vitamins (not sure

> >which). He said you need to

> >take all six, not just one or two, or it won't have the desired effect.

> >Any way, he said that his

> >patients with Leigh's are actually the most responsive to therapy of all

> >his patients. He also said that

> >he sees lots of kids like who have a period of deterioration, then

> >they plateau for a while, then

> >they begin to make gains and get better. He said that lots of mito

> >disorders have a small window of

> >opportunity to do damage, then they are no longer problematic. He is SO

> >smart and SO nice, I really

> >suggest that you call him. isn't even his patient and he analyzed his

> >urine for free and spoke to me

> >on the phone several times at length. I know you have wonderful doctors

> >for Carl, but I just thought you

> >might want to hear directly from him how good his Leigh's kids are doing.

> >

> >Anyway, hope you guys are doing well. Let me know if you want his phone

> >number.

> >

> >Love,

> >

> >

> >

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

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

> >affected by mitochondrial disease.

> ><< text3.html >>

>

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

by mitochondrial disease.

[Guest guest]

Dr. Kelley said that the vitamin cocktail is standard practice in mito

disorders. He told me that all

doctors are prescribing...he did not make it up, it is common knowledge.

Morning sickness is pretty awful. Craving Hamburgers!!! MMMM....

Terri Mason wrote:

>

>

> ,

>

> Glad to hear about the test results! Carl's lab results have always been

> normal as well. It was definitely frustrating when we were still looking

> for a diagnosis so I know what you mean!

>

> As far as what Dr. Kelley is saying about Leigh's patients, I do admit that

> I have a couple of problems. It's not that I doubt Carl could live into his

> twenties because honestly, Carl is doing very well. In fact Carl is

> healthier now than he has ever been - with the exception of neurologically.

> The only area in which he continually and consistently deteriorates is his

> central nervous system. So, if we could find something to halt that

> particular deterioration (I'm still hoping for Uridine, but I'm starting to

> think that trial is never going to happen!) then Carl could conceivably live

> quite well for quite a while.

>

> However, the problem I have is that if Dr. Kelley is so sure that this

> " cocktail " is producing these kinds of results, why doesn't anybody else

> know about it? Why hasn't he published something? Why won't he say what's

> in it? I know why he wouldn't want to give medical advice to people who

> aren't his patients, but if this is so great why isn't he at least telling

> all the other doctors so that they know to get their kids with Leigh's on it

> immediately? What about all those parents of kids with Leigh's who are

> given the traditional prognosis and told there is nothing to do? Carl's

> metabolic doc is pretty good and although he's not a mito expert by any

> means, he does have access to a lot of mito experts, including Dr. Kelley.

> Why hasn't doctor Kelley at least shared this cocktail and his glorious

> results with the professinal internet groups (of which he and Carl's

> metabolic doc are both members)?

>

> It's not that I don't think Dr. Kelley is a wonderful doctor, because I have

> heard nothing but wonderful things about him. BUT, doesn't it seem a little

> selfish that he isn't making this better known so that more kids have a

> chance of benefiting?

>

> Terri

>

> P.S. How's the morning sickness? Craving anything weird yet? :-)

>

> >

> >Reply-To: Mitoonelist

> >To: Mitoonelist

> >Subject: Hi Terri!

> >Date: Sun, 14 Nov 1999 10:01:13 -0800

> >

> >

> >Hi Terri!

> >

> >Just wanted to say hello and tell you about my conversation with Dr. Kelley

> >on Friday (he actually called

> >me at 9pm on a Friday night)!

> >

> >He told me that 's new organic acid profile, both mid-day and fasting,

> >was absolutely normal. No

> >ketosis, no nothing. This is good in some ways, but it leads us no closer

> >to the answer. He said that it

> >is possible that, if has a mito disorder, that it is just confined to

> >the nervous system and that it

> >won't show up in body fluids or muscle tissue. He also said that there is

> >no lactic acidosis. We are

> >still waiting on blood we had taken last week. So far we have back normal

> >Vit. D, B12 and Zinc. Normal

> >ammonia. Normal alphafetoprotein. The only thing that came back weird was

> >his cholesterol: 220! Wow.

> >The nurse said it is consistent with hyperlipoproteinemia Type IIa, which

> >is a familial cholesterol

> >metabolism problem. This doesn't surprise me because my side of the family

> >has naturally high

> >cholesterol. Dr. Kelley says this is unrelated to whatever else is going

> >on.

> >

> >Anyway, remember when you said that the only people you heard of with

> >Leigh's lived to mid-childhood?

> >Well, not Dr. Kelley's patients. He has childhood onset Leigh's patients

> >who are in their twenties and

> >doing wonderfully! He said that the most important thing to do for kids

> >with Leigh's is to get them on

> >the vitamin coctail that he prescribes which contains 6 vitamins (not sure

> >which). He said you need to

> >take all six, not just one or two, or it won't have the desired effect.

> >Any way, he said that his

> >patients with Leigh's are actually the most responsive to therapy of all

> >his patients. He also said that

> >he sees lots of kids like who have a period of deterioration, then

> >they plateau for a while, then

> >they begin to make gains and get better. He said that lots of mito

> >disorders have a small window of

> >opportunity to do damage, then they are no longer problematic. He is SO

> >smart and SO nice, I really

> >suggest that you call him. isn't even his patient and he analyzed his

> >urine for free and spoke to me

> >on the phone several times at length. I know you have wonderful doctors

> >for Carl, but I just thought you

> >might want to hear directly from him how good his Leigh's kids are doing.

> >

> >Anyway, hope you guys are doing well. Let me know if you want his phone

> >number.

> >

> >Love,

> >

> >

> >

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

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

> >affected by mitochondrial disease.

> ><< text3.html >>

>

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

by mitochondrial disease.

[Guest guest]

Dr. Kelley said that the vitamin cocktail is standard practice in mito

disorders. He told me that all

doctors are prescribing...he did not make it up, it is common knowledge.

Morning sickness is pretty awful. Craving Hamburgers!!! MMMM....

Terri Mason wrote:

>

>

> ,

>

> Glad to hear about the test results! Carl's lab results have always been

> normal as well. It was definitely frustrating when we were still looking

> for a diagnosis so I know what you mean!

>

> As far as what Dr. Kelley is saying about Leigh's patients, I do admit that

> I have a couple of problems. It's not that I doubt Carl could live into his

> twenties because honestly, Carl is doing very well. In fact Carl is

> healthier now than he has ever been - with the exception of neurologically.

> The only area in which he continually and consistently deteriorates is his

> central nervous system. So, if we could find something to halt that

> particular deterioration (I'm still hoping for Uridine, but I'm starting to

> think that trial is never going to happen!) then Carl could conceivably live

> quite well for quite a while.

>

> However, the problem I have is that if Dr. Kelley is so sure that this

> " cocktail " is producing these kinds of results, why doesn't anybody else

> know about it? Why hasn't he published something? Why won't he say what's

> in it? I know why he wouldn't want to give medical advice to people who

> aren't his patients, but if this is so great why isn't he at least telling

> all the other doctors so that they know to get their kids with Leigh's on it

> immediately? What about all those parents of kids with Leigh's who are

> given the traditional prognosis and told there is nothing to do? Carl's

> metabolic doc is pretty good and although he's not a mito expert by any

> means, he does have access to a lot of mito experts, including Dr. Kelley.

> Why hasn't doctor Kelley at least shared this cocktail and his glorious

> results with the professinal internet groups (of which he and Carl's

> metabolic doc are both members)?

>

> It's not that I don't think Dr. Kelley is a wonderful doctor, because I have

> heard nothing but wonderful things about him. BUT, doesn't it seem a little

> selfish that he isn't making this better known so that more kids have a

> chance of benefiting?

>

> Terri

>

> P.S. How's the morning sickness? Craving anything weird yet? :-)

>

> >

> >Reply-To: Mitoonelist

> >To: Mitoonelist

> >Subject: Hi Terri!

> >Date: Sun, 14 Nov 1999 10:01:13 -0800

> >

> >

> >Hi Terri!

> >

> >Just wanted to say hello and tell you about my conversation with Dr. Kelley

> >on Friday (he actually called

> >me at 9pm on a Friday night)!

> >

> >He told me that 's new organic acid profile, both mid-day and fasting,

> >was absolutely normal. No

> >ketosis, no nothing. This is good in some ways, but it leads us no closer

> >to the answer. He said that it

> >is possible that, if has a mito disorder, that it is just confined to

> >the nervous system and that it

> >won't show up in body fluids or muscle tissue. He also said that there is

> >no lactic acidosis. We are

> >still waiting on blood we had taken last week. So far we have back normal

> >Vit. D, B12 and Zinc. Normal

> >ammonia. Normal alphafetoprotein. The only thing that came back weird was

> >his cholesterol: 220! Wow.

> >The nurse said it is consistent with hyperlipoproteinemia Type IIa, which

> >is a familial cholesterol

> >metabolism problem. This doesn't surprise me because my side of the family

> >has naturally high

> >cholesterol. Dr. Kelley says this is unrelated to whatever else is going

> >on.

> >

> >Anyway, remember when you said that the only people you heard of with

> >Leigh's lived to mid-childhood?

> >Well, not Dr. Kelley's patients. He has childhood onset Leigh's patients

> >who are in their twenties and

> >doing wonderfully! He said that the most important thing to do for kids

> >with Leigh's is to get them on

> >the vitamin coctail that he prescribes which contains 6 vitamins (not sure

> >which). He said you need to

> >take all six, not just one or two, or it won't have the desired effect.

> >Any way, he said that his

> >patients with Leigh's are actually the most responsive to therapy of all

> >his patients. He also said that

> >he sees lots of kids like who have a period of deterioration, then

> >they plateau for a while, then

> >they begin to make gains and get better. He said that lots of mito

> >disorders have a small window of

> >opportunity to do damage, then they are no longer problematic. He is SO

> >smart and SO nice, I really

> >suggest that you call him. isn't even his patient and he analyzed his

> >urine for free and spoke to me

> >on the phone several times at length. I know you have wonderful doctors

> >for Carl, but I just thought you

> >might want to hear directly from him how good his Leigh's kids are doing.

> >

> >Anyway, hope you guys are doing well. Let me know if you want his phone

> >number.

> >

> >Love,

> >

> >

> >

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

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

> >affected by mitochondrial disease.

> ><< text3.html >>

>

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

by mitochondrial disease.

[Guest guest]

I know, but I don't assume anything anymore. I have no reason not to believe Dr.

Kelley. Okay, maybe he

is overly optimistic, but he has no reason to lie to me. My son has been to 38

doctors in the past 13

months. Nobody has given us any information or any hope. Why should I not

listen to someone who, for

once, has an idea about what can be done.

FYI, he never said that this was " his " coctail, nor did he say that all kids

respond to it. On the

contrary, he said that about 60 percent of kids respond to it, but that it was

his Leighs kids who

responded the best. His " window of opportunity " theory (which is not a theory

but something he sees all

the time) was also regarding some kids, not all. He was referring specifically

to , who deteriorated

for about 6 months, then plateaued, and now is making progress without any help

at all.

By the way, Kennedy Kreiger was just rated either #1 or #2 (can't remember

which) in pediatric neurology

as well as genetics in US News and World Report. I value any opinion from this

institution as top

knotch. The way people are talking on this list, they are acting as if he is a

flake, and I find that

hard to take.

Everyone is free to voice his or her own doubts, but I was just trying to help.

I guess I'll no longer

offer any information which is in any way meant to be optimistic, as it seems to

be resented for some

reason. Sorry I made everyone upset. I was only trying to help.

Sorry,

[Guest guest]

I know, but I don't assume anything anymore. I have no reason not to believe Dr.

Kelley. Okay, maybe he

is overly optimistic, but he has no reason to lie to me. My son has been to 38

doctors in the past 13

months. Nobody has given us any information or any hope. Why should I not

listen to someone who, for

once, has an idea about what can be done.

FYI, he never said that this was " his " coctail, nor did he say that all kids

respond to it. On the

contrary, he said that about 60 percent of kids respond to it, but that it was

his Leighs kids who

responded the best. His " window of opportunity " theory (which is not a theory

but something he sees all

the time) was also regarding some kids, not all. He was referring specifically

to , who deteriorated

for about 6 months, then plateaued, and now is making progress without any help

at all.

By the way, Kennedy Kreiger was just rated either #1 or #2 (can't remember

which) in pediatric neurology

as well as genetics in US News and World Report. I value any opinion from this

institution as top

knotch. The way people are talking on this list, they are acting as if he is a

flake, and I find that

hard to take.

Everyone is free to voice his or her own doubts, but I was just trying to help.

I guess I'll no longer

offer any information which is in any way meant to be optimistic, as it seems to

be resented for some

reason. Sorry I made everyone upset. I was only trying to help.

Sorry,

[Guest guest]

From what I have seen, most doctors are too competetive to ever share

information. They act, for the most

part, like a bunch of children. For a year my son's neurologist tried to

discourage me from getting a

second opinion. He acted offended whenever I mentioned it. When I finally did

get a second opinion, the

new neurologist did nothing but bad mouth the first neurologist! It's like high

school (or worse, maybe

even elementary school)!

Terri Mason wrote:

>

>

> ,

>

> I don't think anybody was upset by the information you presented, just

> intrigued. I don't think anybody on this list thinks that Dr. Kelley is a

> flake either - quite the contrary in fact as he is a very respected mito

> specialist. It's just still such a growing field that it would be nice if

> all the doctors could get together and share their information so that more

> could benefit.

>

> Terri

>

> >

> >Reply-To: Mitoonelist

> >To: Mitoonelist

> >Subject: Re: Hi Terri!

> >Date: Mon, 15 Nov 1999 16:24:43 -0800

> >

> >I know, but I don't assume anything anymore. I have no reason not to

> >believe Dr. Kelley. Okay, maybe he

> >is overly optimistic, but he has no reason to lie to me. My son has been

> >to 38 doctors in the past 13

> >months. Nobody has given us any information or any hope. Why should I not

> >listen to someone who, for

> >once, has an idea about what can be done.

> >

> >FYI, he never said that this was " his " coctail, nor did he say that all

> >kids respond to it. On the

> >contrary, he said that about 60 percent of kids respond to it, but that it

> >was his Leighs kids who

> >responded the best. His " window of opportunity " theory (which is not a

> >theory but something he sees all

> >the time) was also regarding some kids, not all. He was referring

> >specifically to , who deteriorated

> >for about 6 months, then plateaued, and now is making progress without any

> >help at all.

> >

> >By the way, Kennedy Kreiger was just rated either #1 or #2 (can't remember

> >which) in pediatric neurology

> >as well as genetics in US News and World Report. I value any opinion from

> >this institution as top

> >knotch. The way people are talking on this list, they are acting as if he

> >is a flake, and I find that

> >hard to take.

> >

> >Everyone is free to voice his or her own doubts, but I was just trying to

> >help. I guess I'll no longer

> >offer any information which is in any way meant to be optimistic, as it

> >seems to be resented for some

> >reason. Sorry I made everyone upset. I was only trying to help.

> >

> >Sorry,

> >

> >

> >

> >

> >

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

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

> >affected by mitochondrial disease.

> ><< text3.html >>

>

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

by mitochondrial disease.

[Guest guest]

From what I have seen, most doctors are too competetive to ever share

information. They act, for the most

part, like a bunch of children. For a year my son's neurologist tried to

discourage me from getting a

second opinion. He acted offended whenever I mentioned it. When I finally did

get a second opinion, the

new neurologist did nothing but bad mouth the first neurologist! It's like high

school (or worse, maybe

even elementary school)!

Terri Mason wrote:

>

>

> ,

>

> I don't think anybody was upset by the information you presented, just

> intrigued. I don't think anybody on this list thinks that Dr. Kelley is a

> flake either - quite the contrary in fact as he is a very respected mito

> specialist. It's just still such a growing field that it would be nice if

> all the doctors could get together and share their information so that more

> could benefit.

>

> Terri

>

> >

> >Reply-To: Mitoonelist

> >To: Mitoonelist

> >Subject: Re: Hi Terri!

> >Date: Mon, 15 Nov 1999 16:24:43 -0800

> >

> >I know, but I don't assume anything anymore. I have no reason not to

> >believe Dr. Kelley. Okay, maybe he

> >is overly optimistic, but he has no reason to lie to me. My son has been

> >to 38 doctors in the past 13

> >months. Nobody has given us any information or any hope. Why should I not

> >listen to someone who, for

> >once, has an idea about what can be done.

> >

> >FYI, he never said that this was " his " coctail, nor did he say that all

> >kids respond to it. On the

> >contrary, he said that about 60 percent of kids respond to it, but that it

> >was his Leighs kids who

> >responded the best. His " window of opportunity " theory (which is not a

> >theory but something he sees all

> >the time) was also regarding some kids, not all. He was referring

> >specifically to , who deteriorated

> >for about 6 months, then plateaued, and now is making progress without any

> >help at all.

> >

> >By the way, Kennedy Kreiger was just rated either #1 or #2 (can't remember

> >which) in pediatric neurology

> >as well as genetics in US News and World Report. I value any opinion from

> >this institution as top

> >knotch. The way people are talking on this list, they are acting as if he

> >is a flake, and I find that

> >hard to take.

> >

> >Everyone is free to voice his or her own doubts, but I was just trying to

> >help. I guess I'll no longer

> >offer any information which is in any way meant to be optimistic, as it

> >seems to be resented for some

> >reason. Sorry I made everyone upset. I was only trying to help.

> >

> >Sorry,

> >

> >

> >

> >

> >

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

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

> >affected by mitochondrial disease.

> ><< text3.html >>

>

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

by mitochondrial disease.

[Guest guest]

From what I have seen, most doctors are too competetive to ever share

information. They act, for the most

part, like a bunch of children. For a year my son's neurologist tried to

discourage me from getting a

second opinion. He acted offended whenever I mentioned it. When I finally did

get a second opinion, the

new neurologist did nothing but bad mouth the first neurologist! It's like high

school (or worse, maybe

even elementary school)!

Terri Mason wrote:

>

>

> ,

>

> I don't think anybody was upset by the information you presented, just

> intrigued. I don't think anybody on this list thinks that Dr. Kelley is a

> flake either - quite the contrary in fact as he is a very respected mito

> specialist. It's just still such a growing field that it would be nice if

> all the doctors could get together and share their information so that more

> could benefit.

>

> Terri

>

> >

> >Reply-To: Mitoonelist

> >To: Mitoonelist

> >Subject: Re: Hi Terri!

> >Date: Mon, 15 Nov 1999 16:24:43 -0800

> >

> >I know, but I don't assume anything anymore. I have no reason not to

> >believe Dr. Kelley. Okay, maybe he

> >is overly optimistic, but he has no reason to lie to me. My son has been

> >to 38 doctors in the past 13

> >months. Nobody has given us any information or any hope. Why should I not

> >listen to someone who, for

> >once, has an idea about what can be done.

> >

> >FYI, he never said that this was " his " coctail, nor did he say that all

> >kids respond to it. On the

> >contrary, he said that about 60 percent of kids respond to it, but that it

> >was his Leighs kids who

> >responded the best. His " window of opportunity " theory (which is not a

> >theory but something he sees all

> >the time) was also regarding some kids, not all. He was referring

> >specifically to , who deteriorated

> >for about 6 months, then plateaued, and now is making progress without any

> >help at all.

> >

> >By the way, Kennedy Kreiger was just rated either #1 or #2 (can't remember

> >which) in pediatric neurology

> >as well as genetics in US News and World Report. I value any opinion from

> >this institution as top

> >knotch. The way people are talking on this list, they are acting as if he

> >is a flake, and I find that

> >hard to take.

> >

> >Everyone is free to voice his or her own doubts, but I was just trying to

> >help. I guess I'll no longer

> >offer any information which is in any way meant to be optimistic, as it

> >seems to be resented for some

> >reason. Sorry I made everyone upset. I was only trying to help.

> >

> >Sorry,

> >

> >

> >

> >

> >

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

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

> >affected by mitochondrial disease.

> ><< text3.html >>

>

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

by mitochondrial disease.

[Guest guest]

Hi ,

My name is Barbara . My 13 mth old son has a possible

mitochondrial disorder. He stopped breathing at 3 days old and was

severely dehydrated although he was nursing normally and still

urinating. They found that he had an elevated lactic acid level and

later testing found elevated pyruvate level also. His urine organic

acid test was normal, his carnitine was low as a newborn but later test

found it to be normal also. He's had an MRI/MRS that was normal and a

mitochondrial DNA test that was normal also. I'm telling you all of

this because I have been through the ringers with doctors and their

ideas and beliefs. I have also been told about this vitamin cocktail.

It is known by others. I see doctors at Children's Hospital in

Washington DC. I thought it might help to know that someone else has

been told about it also.

Sincerely,

Barbara

[Guest guest]

Hi ,

My name is Barbara . My 13 mth old son has a possible

mitochondrial disorder. He stopped breathing at 3 days old and was

severely dehydrated although he was nursing normally and still

urinating. They found that he had an elevated lactic acid level and

later testing found elevated pyruvate level also. His urine organic

acid test was normal, his carnitine was low as a newborn but later test

found it to be normal also. He's had an MRI/MRS that was normal and a

mitochondrial DNA test that was normal also. I'm telling you all of

this because I have been through the ringers with doctors and their

ideas and beliefs. I have also been told about this vitamin cocktail.

It is known by others. I see doctors at Children's Hospital in

Washington DC. I thought it might help to know that someone else has

been told about it also.

Sincerely,

Barbara

[Guest guest]

Hi ,

My name is Barbara . My 13 mth old son has a possible

mitochondrial disorder. He stopped breathing at 3 days old and was

severely dehydrated although he was nursing normally and still

urinating. They found that he had an elevated lactic acid level and

later testing found elevated pyruvate level also. His urine organic

acid test was normal, his carnitine was low as a newborn but later test

found it to be normal also. He's had an MRI/MRS that was normal and a

mitochondrial DNA test that was normal also. I'm telling you all of

this because I have been through the ringers with doctors and their

ideas and beliefs. I have also been told about this vitamin cocktail.

It is known by others. I see doctors at Children's Hospital in

Washington DC. I thought it might help to know that someone else has

been told about it also.

Sincerely,

Barbara

[Guest guest]

Barbara,

Saw your message and was curious as to who you see at Children's in D.C. My

personal experience with them

is that they are terrible doctors and that, administratively, the hospital is in

serious trouble. My son

has seen Dr. Fishman, Dr. Swaboda, Dr. Escolar, Dr. Tifft, and Dr. Gropman. The

only one who seems to

know what she is talking about is Dr. Gropman, but as you probably already know,

it is usually a 6-9 month

wait to see her.

Just wondering how your experiences are with them. You can e-mail me privately

if you want to. I live in

County, about ten miles north of Olney. Where do you live?

Best,

Barbara wrote:

>

>

> Hi ,

> My name is Barbara . My 13 mth old son has a possible

> mitochondrial disorder. He stopped breathing at 3 days old and was

> severely dehydrated although he was nursing normally and still

> urinating. They found that he had an elevated lactic acid level and

> later testing found elevated pyruvate level also. His urine organic

> acid test was normal, his carnitine was low as a newborn but later test

> found it to be normal also. He's had an MRI/MRS that was normal and a

> mitochondrial DNA test that was normal also. I'm telling you all of

> this because I have been through the ringers with doctors and their

> ideas and beliefs. I have also been told about this vitamin cocktail.

> It is known by others. I see doctors at Children's Hospital in

> Washington DC. I thought it might help to know that someone else has

> been told about it also.

>

> Sincerely,

> Barbara

>

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

by mitochondrial disease.

[Guest guest]

Dear Barbara,

It sounds like our little ones have alot in common. My Lexi (now 19 months)

had numerous times when she stopped breathing and/or her heart rate would

drop very low when she was very young. We had the mDNA test, but it didn't

show anything definative; the results from further mito studies indicated a

" Probable " mito defect affecting her respiratory transport chain. She also

takes A vitamin cocktail, although not THE cocktail (it has 6 I believe, and

she only takes 4). She seems to be doing okay, although we still go up and

down--still lots of dusky spells, needing O2. My question to you is, has

your boy's pyruvate and/or lactic acid levels come down at all since he's

been on the vitamins? Lexi's keep getting worse, although she doesn't seem

to be showing too many side-effects. Thanks for your input.

ruth

mom to Mitch (4 1/2 with no symptoms) and Lexi (19 months, mito defect

causing bradycardia, apnea, seizures, sensory deficits, feeding problems,

gastrointestinal problems, and still the CUTEST little smile you ever did see)

[Guest guest]

Dear Barbara,

It sounds like our little ones have alot in common. My Lexi (now 19 months)

had numerous times when she stopped breathing and/or her heart rate would

drop very low when she was very young. We had the mDNA test, but it didn't

show anything definative; the results from further mito studies indicated a

" Probable " mito defect affecting her respiratory transport chain. She also

takes A vitamin cocktail, although not THE cocktail (it has 6 I believe, and

she only takes 4). She seems to be doing okay, although we still go up and

down--still lots of dusky spells, needing O2. My question to you is, has

your boy's pyruvate and/or lactic acid levels come down at all since he's

been on the vitamins? Lexi's keep getting worse, although she doesn't seem

to be showing too many side-effects. Thanks for your input.

ruth

mom to Mitch (4 1/2 with no symptoms) and Lexi (19 months, mito defect

causing bradycardia, apnea, seizures, sensory deficits, feeding problems,

gastrointestinal problems, and still the CUTEST little smile you ever did see)

[Guest guest]

My daughter fits well into the category of Leigh's

disease--specifically she has a severe Complex I

deficiency. She functions at about a 3-4 month level

physically (except for a lack of head control) and somewhere

between a 4-12 month level cognitively. She is 3 1/2 years

old. She is on Carnitor, Co-Q10, lipoic acid, Vit E,

Selenium and Riboflavin. The Carnitor made a huge

difference--basically saved her life. With the rest, we

have seen improvement--she has more energy and can seem to

focus on new things a bit longer (maybe a minute instead of

seconds)--nothing dramatic, but gains nevertheless.

Personally I think doctors make mistakes both ways when

talking about what to expect...I like what Dr. Cohen told us

about Laney's life expectancy--he said we should plan for

her to live well into adulthood, but that if she came down

with an illness and died this winter, no one would scratch

their heads and wonder what happened. It can be frustrating

to live with such unknowns--I know for a long time that I

wanted to know a time to plan on. It has taken me about a

year to learn to live comfortably with no knowledge of her

life span probabilities. We just live each day--I always

take a moment to imprint her into my conciousness--but

basically I try to take her for granted as much as I can!

I have to agree about the g-tube too--I can't imagine my

life without it now (and was so hesitant to get one in the

beginning). I think it would be great if all kids came with

them--at least for meds--then when they hit about 4 years

old they could dry up and fall off...sort of like a second

umbilical cord!!!

, mom to Adelaine and Baby ?

--

The s

, , Adelaine and Baby?

Ann Arbor, MI

http://www.mich/com/~jaj

[Guest guest]

My daughter fits well into the category of Leigh's

disease--specifically she has a severe Complex I

deficiency. She functions at about a 3-4 month level

physically (except for a lack of head control) and somewhere

between a 4-12 month level cognitively. She is 3 1/2 years

old. She is on Carnitor, Co-Q10, lipoic acid, Vit E,

Selenium and Riboflavin. The Carnitor made a huge

difference--basically saved her life. With the rest, we

have seen improvement--she has more energy and can seem to

focus on new things a bit longer (maybe a minute instead of

seconds)--nothing dramatic, but gains nevertheless.

Personally I think doctors make mistakes both ways when

talking about what to expect...I like what Dr. Cohen told us

about Laney's life expectancy--he said we should plan for

her to live well into adulthood, but that if she came down

with an illness and died this winter, no one would scratch

their heads and wonder what happened. It can be frustrating

to live with such unknowns--I know for a long time that I

wanted to know a time to plan on. It has taken me about a

year to learn to live comfortably with no knowledge of her

life span probabilities. We just live each day--I always

take a moment to imprint her into my conciousness--but

basically I try to take her for granted as much as I can!

I have to agree about the g-tube too--I can't imagine my

life without it now (and was so hesitant to get one in the

beginning). I think it would be great if all kids came with

them--at least for meds--then when they hit about 4 years

old they could dry up and fall off...sort of like a second

umbilical cord!!!

, mom to Adelaine and Baby ?

--

The s

, , Adelaine and Baby?

Ann Arbor, MI

http://www.mich/com/~jaj

[Guest guest]

Hi Ruth,

Corbin is not on the vitamins. I'm sorry we got our wires crossed, but

very glad to talk with someone with similar problems. Corbin has only

had one lactic acid test that came back on the high normal side. He

hasn't had the pyruvate checked in months. I just spoke with my

geneticist and we may be starting on a vitamin cocktail after seeing

another neurologist. Corbin is 14 mths old now and he hasn't had any

respiratory problems in months (knock on wood).

When you say " further mito studies " what are you referring to? We've

had a MRI/MRS and mitochondrial DNA. Both were normal. We are now

talking about the muscle biopsy. Have you had that done? Is Lexi's

development fine?

Corbin had physical therapy as an infant because is leg muscles were so

tight that he couldn't straighten his legs. Once we worked that out it

was uphill all the way. He now has a speech pathologist that we see

twice a month. We'll be doing a thorough developmental evaluation soon

also. It helps so much to talk to other parents.

In your opinion have the vitamins helped in anyway? How do you feel

about the vitamin cocktail? Thanks so much for talking. I look forward

to hearing you opinions.

Barbara

[Guest guest]

Hi Ruth,

Corbin is not on the vitamins. I'm sorry we got our wires crossed, but

very glad to talk with someone with similar problems. Corbin has only

had one lactic acid test that came back on the high normal side. He

hasn't had the pyruvate checked in months. I just spoke with my

geneticist and we may be starting on a vitamin cocktail after seeing

another neurologist. Corbin is 14 mths old now and he hasn't had any

respiratory problems in months (knock on wood).

When you say " further mito studies " what are you referring to? We've

had a MRI/MRS and mitochondrial DNA. Both were normal. We are now

talking about the muscle biopsy. Have you had that done? Is Lexi's

development fine?

Corbin had physical therapy as an infant because is leg muscles were so

tight that he couldn't straighten his legs. Once we worked that out it

was uphill all the way. He now has a speech pathologist that we see

twice a month. We'll be doing a thorough developmental evaluation soon

also. It helps so much to talk to other parents.

In your opinion have the vitamins helped in anyway? How do you feel

about the vitamin cocktail? Thanks so much for talking. I look forward

to hearing you opinions.

Barbara

[Guest guest]

Hi Ruth,

Corbin is not on the vitamins. I'm sorry we got our wires crossed, but

very glad to talk with someone with similar problems. Corbin has only

had one lactic acid test that came back on the high normal side. He

hasn't had the pyruvate checked in months. I just spoke with my

geneticist and we may be starting on a vitamin cocktail after seeing

another neurologist. Corbin is 14 mths old now and he hasn't had any

respiratory problems in months (knock on wood).

When you say " further mito studies " what are you referring to? We've

had a MRI/MRS and mitochondrial DNA. Both were normal. We are now

talking about the muscle biopsy. Have you had that done? Is Lexi's

development fine?

Corbin had physical therapy as an infant because is leg muscles were so

tight that he couldn't straighten his legs. Once we worked that out it

was uphill all the way. He now has a speech pathologist that we see

twice a month. We'll be doing a thorough developmental evaluation soon

also. It helps so much to talk to other parents.

In your opinion have the vitamins helped in anyway? How do you feel

about the vitamin cocktail? Thanks so much for talking. I look forward

to hearing you opinions.

Barbara

[Guest guest]

barbara,

Lexi has had a skin biopsy which gave some answers but was inconclusive. Her

neuro has urged us to do the muscle bio, but we are waiting as long as we

can--have had enough of Doctor Bingo for one lifetime, thank you very much!!

Right now her condition is fairly stable (thank God) so we are waiting

until such time when her situation changes before we do further testing. She

had so much done to date that we felt this was the right thing to do for our

family. We have a tentative Dx of mito myopathy, which affects her

respiratory transport chain--and for now that's enough.

She still gets Ot and is just starting feeding therapy--she chokes all the

time-- for a grand total of 4 hours per week for my 19 month old baby. WHEW!

We did graduate from PT for the time being so that's a bit of a break.

Lexi has been on part of the vitamin cocktail (Carntine, CoQ10, Riboflavin,

and now Bicitra) for the past 16 months. I definately think it's helped her

out, although the results were never dramatic, just slow but steady progress.

Anyway, I think it's a definate help and worth the effort to try if Corbin

isn't on it yet. The only thing it doesn't help are her seizures, but right

now they are not casuing and serious problems so we don't have her medicated

for them.

Hope these thoughts help!!

ruth

[Guest guest]

barbara,

Lexi has had a skin biopsy which gave some answers but was inconclusive. Her

neuro has urged us to do the muscle bio, but we are waiting as long as we

can--have had enough of Doctor Bingo for one lifetime, thank you very much!!

Right now her condition is fairly stable (thank God) so we are waiting

until such time when her situation changes before we do further testing. She

had so much done to date that we felt this was the right thing to do for our

family. We have a tentative Dx of mito myopathy, which affects her

respiratory transport chain--and for now that's enough.

She still gets Ot and is just starting feeding therapy--she chokes all the

time-- for a grand total of 4 hours per week for my 19 month old baby. WHEW!

We did graduate from PT for the time being so that's a bit of a break.

Lexi has been on part of the vitamin cocktail (Carntine, CoQ10, Riboflavin,

and now Bicitra) for the past 16 months. I definately think it's helped her

out, although the results were never dramatic, just slow but steady progress.

Anyway, I think it's a definate help and worth the effort to try if Corbin

isn't on it yet. The only thing it doesn't help are her seizures, but right

now they are not casuing and serious problems so we don't have her medicated

for them.

Hope these thoughts help!!

ruth