Was: Re: Hijacked list - Now: High Pyruvates - Jo

[Guest guest]

Hi Jo-

You post caught my eye! What did the neurologist make of the

elevated pyruavtes?

Our daughter (7 yr) has consistently had elevated pyruvates before

supplements, etc. Hers were .08 on any given day, and .14 when they

tested her when she had a fever. The geneticist was concerned, but

they can not find anything wrong. They tested her for Pyruvate

Dehydrogenase deficiency and it was negative via blood. The

egeneticist wanted to do a muscle biopsy, but we decided to wait on

that. She also had primarily an issue with intelligibility and motor

issues.

We started supplementing carnitine and fish oils and E. The last set

of labs were normal for the first time as well. But, it was a

fasting blood draw, so maybe that is why.(pyruvates clearing

relatively quickly I think). Anyway, no one has even had an answer

for us, just wondering what they were telling you.

Feel free to email me offline. jpiper@... if you want. Itis

the first time I have heard of someone with a similar issue!

Thanks

Wendi

>

> We've been seeing a neurologist for several years. She has only

had 4 big blood tests in this time. 1.) Blood Pyruvate was high 2.)

Blood Pyruvate was high 3.)After beginning B-Complex 50mg Blood

Pyruvate was normal, and 4.)Blood Pyruvate was high again when she

had a serious flu. The doc, who is actually a metabolic geneticist

said that her elevated blood pyruvate would have been ignored by

most doctors. The norm is .03 to .08, hers was .12, .11, .03, .11.

They are waiting for the remainder of the amino acids to be

returned, and will increase her dosage to a prescription level. The

L-Carnitine was his suggestion, and has made her very happy and

easier to understand. She has only been on this for 1 month though.

Pronunciation is her biggest problem, definite motor planning

issue. Her vocabulary is good.

>

> The B-Complex has made her healthy. She used to catch

everything and did not recover easily. B-Complex is water soluble,

and is good for most people. She had not been sick for 4 years,

until last week. B-Complex was started 4 years ago.

>

> The L-Carnitine helps with the production of energy within the

cells. They believe the high blood pyruvate is a sign that her

energy production is not normal. A typical person would not have an

elevated blood pyruvate when they are sick.

>

> ilizzy03 <lizlaw@...> wrote:

> Can you please tell me about how one knows to do L

Carnitine.

> tested fine initially (in May) but we have had a lot of changes

since

> then and plan to retest. I can't recall though if this is one of

> those things where blood levels don't show all. Please understand

I

> would only do this under a mainstream physicians care so I am not

> asking you to be my doc.

>

>

> > >

> > > Cincy,

> > >

> > > I think you missed my point. I'm not againt discussing any

> > > intervention, but people need to self regulate. I wouldn't

mind a

> > > periodic summary of what helped someone's child get better. I

like

> > > to know what else is available, but I don't need to hear every

> minor

> > > detail 20-30 times a day. I don't think many people would be

> > > interested in all my seizure disorder discussions even though

> that is

> > > what caused my son's apraxia. There is a limit to what is

> > > appropriate for a particular group. The therapy and IEP

questions

> > > should not be lost in the shuffle.

> > >

> > > On most of my lists, people say what helped them and if others

are

> > > interested they usually join a group that discusses that

> intervention

> > > in detail.

> > >

> > >

> > >

> >

> >

[Guest guest]

Hi Wendi,

The doctor told me that very little is known about blood pyruvate, but they do

know that it has to do with energy production. I suppose once the supplements

are doing their job the blood pyruvate would drop. I'll keep you posted with

what I learn, but not too much. I'd be interested to learn how much the fish

oil and vitamin E helped. I think I'm going to go ahead and order the ProEFA

and how much Vitamin E does a person give. This doctor is very conservative,

and he only wants to add one thing at a time, but we've lost alot of time

already.

wendi_piper <jpiper@...> wrote:

Hi Jo-

You post caught my eye! What did the neurologist make of the

elevated pyruavtes?

Our daughter (7 yr) has consistently had elevated pyruvates before

supplements, etc. Hers were .08 on any given day, and .14 when they

tested her when she had a fever. The geneticist was concerned, but

they can not find anything wrong. They tested her for Pyruvate

Dehydrogenase deficiency and it was negative via blood. The

egeneticist wanted to do a muscle biopsy, but we decided to wait on

that. She also had primarily an issue with intelligibility and motor

issues.

We started supplementing carnitine and fish oils and E. The last set

of labs were normal for the first time as well. But, it was a

fasting blood draw, so maybe that is why.(pyruvates clearing

relatively quickly I think). Anyway, no one has even had an answer

for us, just wondering what they were telling you.

Feel free to email me offline. jpiper@... if you want. Itis

the first time I have heard of someone with a similar issue!

Thanks

Wendi

>

> We've been seeing a neurologist for several years. She has only

had 4 big blood tests in this time. 1.) Blood Pyruvate was high 2.)

Blood Pyruvate was high 3.)After beginning B-Complex 50mg Blood

Pyruvate was normal, and 4.)Blood Pyruvate was high again when she

had a serious flu. The doc, who is actually a metabolic geneticist

said that her elevated blood pyruvate would have been ignored by

most doctors. The norm is .03 to .08, hers was .12, .11, .03, .11.

They are waiting for the remainder of the amino acids to be

returned, and will increase her dosage to a prescription level. The

L-Carnitine was his suggestion, and has made her very happy and

easier to understand. She has only been on this for 1 month though.

Pronunciation is her biggest problem, definite motor planning

issue. Her vocabulary is good.

>

> The B-Complex has made her healthy. She used to catch

everything and did not recover easily. B-Complex is water soluble,

and is good for most people. She had not been sick for 4 years,

until last week. B-Complex was started 4 years ago.

>

> The L-Carnitine helps with the production of energy within the

cells. They believe the high blood pyruvate is a sign that her

energy production is not normal. A typical person would not have an

elevated blood pyruvate when they are sick.

>

> ilizzy03 <lizlaw@...> wrote:

> Can you please tell me about how one knows to do L

Carnitine.

> tested fine initially (in May) but we have had a lot of changes

since

> then and plan to retest. I can't recall though if this is one of

> those things where blood levels don't show all. Please understand

I

> would only do this under a mainstream physicians care so I am not

> asking you to be my doc.

>

>

> > >

> > > Cincy,

> > >

> > > I think you missed my point. I'm not againt discussing any

> > > intervention, but people need to self regulate. I wouldn't

mind a

> > > periodic summary of what helped someone's child get better. I

like

> > > to know what else is available, but I don't need to hear every

> minor

> > > detail 20-30 times a day. I don't think many people would be

> > > interested in all my seizure disorder discussions even though

> that is

> > > what caused my son's apraxia. There is a limit to what is

> > > appropriate for a particular group. The therapy and IEP

questions

> > > should not be lost in the shuffle.

> > >

> > > On most of my lists, people say what helped them and if others

are

> > > interested they usually join a group that discusses that

> intervention

> > > in detail.

> > >

> > >

> > >

> >

> >