Appt w/ metabolic doc update

March 30, 2000

Friends:

We had an appt with our metabolic doctor yesterday to go over Clayton's

lab results and discuss future testing.

Here are some findings and some concerns and questions:

1. Clayton's lactate and pyruvate are very high. He said, " Did I know

they were this high? " I said yeah, I was in here 2 weeks ago asking

about them. Urghhhh

2. His electrolytes, even though in the normal range, show chloride at

low normal which could mean a long term high lactate level which the

body is compensating for by lowering chloride.

3. Said that the high levels would not be that high from the 24 hour

flu the day before.

4. Reran lactate and pyruvate today. Clayton kicked and screamed

harder than the last time so I'm sure the levels will not be true reads.

5. Doc wants to do emg and I don't want to.

6. Doc wants to do a frozen biopsy and said that the only good fresh

places are in Atlanta and Portland. I can't get Clayton on an airplane

so that won't happen.

7. Said frozen is reliable if handled properly. He said you only hear

stories of them being unreliable from rare cases. (I know no one will

agree with this, but I'm just reporting what he said.) He said the

enzymes are what can get damaged, not the mito structure.

8. Will not help me with vitamin treatment unless I do frozen biopsy

because he won't know what he's treating (can you believe this)

9. There are no other metabolic specialists in our area that deal with

mito.

I feel as though I don't have a lot of choices in this matter since

there are no other docs in my area and I can't get Clayton on a plane.

I don't want to put him through a surgery, since anesthesia can be hard

on him and the fear and pain of it all. But I need treatment for his

lactic/pyruvic acid levels. I wouldn't know where to start in a vitamin

therapy.

He told me to get him on an amino acid protein drink and a

multivitamin. Working on finding something that is casein/gluten free.

Any compounders out there?

Thanks so much for your time and I'm sure I'll get a lot to read from

you all.

Warmly,

Beth Mortl

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