Hi Terri!

November 14, 1999

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,

November 14, 1999

,

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 >>

November 14, 1999

In a message dated 11/14/99 7:01:44 PM Pacific Standard Time,

momalboe@... writes:

<< 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? >>

I like Kelley too but, sometimes he seems abit overly optimistic and offering

excessive hope. His idea and mine about doing great aren't exactly the same.

Sincerely,

November 14, 1999

In a message dated 11/14/99 7:01:44 PM Pacific Standard Time,

momalboe@... writes:

<< 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? >>

I like Kelley too but, sometimes he seems abit overly optimistic and offering

excessive hope. His idea and mine about doing great aren't exactly the same.

Sincerely,

November 14, 1999

In a message dated 11/14/99 7:33:31 PM Pacific Standard Time, jscb@...

writes:

<< BTW, my Chris'

cholesterol is in the upper 200's low 300's just like his dad. )

According to the neuro, it shouldn't be treated at this age and it most

likely has nothing to do with the mito problems. >>

Hi sue,

This caught my eye. I just read tonight about using Niacin to help

bring down cholesterol.

Just thought I would share that.

November 14, 1999

In a message dated 11/14/99 7:33:31 PM Pacific Standard Time, jscb@...

writes:

<< BTW, my Chris'

cholesterol is in the upper 200's low 300's just like his dad. )

According to the neuro, it shouldn't be treated at this age and it most

likely has nothing to do with the mito problems. >>

Hi sue,

This caught my eye. I just read tonight about using Niacin to help

bring down cholesterol.

Just thought I would share that.

November 15, 1999

He won't tell me. :-)

Dillr@... wrote:

> From: Dillr@...

>

> In a message dated 11/14/99 7:01:56 AM Pacific Standard Time,

> sfitzger@... writes:

>

> << he 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. >>

>

> Hummmmmmmmmm I wonder what the cocktail consists of???

>

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

by mitochondrial disease.

November 15, 1999

Hi Terri and Everyone,

I kind of agree with your observations. I know Dr. is good

because my friend Heidi see's him. Hi Heidi! ) Her daughter is on a

bunch of meds and there is a noticable difference with her. However, she

doesn't have Leigh's. When we saw Dr. Haas this past July he put the kids

on B-50 vitamins and CoQ10. Getting them to TAKE the stuff is another

story! Anyway, he said he doesn't routinely put kids on Carnitine (like

a lot of docs do when mito is involved) unless there is a carnitne

deficiency. Now seeing that he runs the Leigh's Center there at UCSD, one

would think he knows what he's doing with regards to meds and Leigh's. I

think every situation is so different that you can't just say, " OK everyone

who has a mito disorder take these 6 vits and you will be fine. " With

Heidi's daughter one of the B vits was causing problems so she was taken

off. Yet for someone else it might be quite beneficial. And I agree that

if Dr. does indeed have proof that these vits are doing some good,

then I would think it's his obligation to share them. BTW, my Chris'

cholesterol is in the upper 200's low 300's just like his dad. )

According to the neuro, it shouldn't be treated at this age and it most

likely has nothing to do with the mito problems.

Well that's just my opinion so take it for what it's worth. ) Take

care everyone...

Sue ( & Jack)-worn out parents to the greatest kids on earth in Las Vegas, NV

Chris-9: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker

-8: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker, trach

tube (larynotracheomalasia), g-tube/fundo Visit us! http://u2.lvcm.com/jscb

Re: Hi Terri!

>

> ,

>

> 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?

November 15, 1999