further testing

[Guest guest]

Our son morgan is diagnosed with an unspecified mito disorder. Lately

he has been having trouble eating. He is now 7 months old and is

regressed to total bottle feeding. He is also having trouble with his

electrolyte balance. We have taken it upon ourselve to mix his

formula with pedialyte in hopes to remedy the constant sodium

depletion. Our doctor has no suggestions and we are not receiving

any response from our doctors at Duke. Does any one else have this

problem? Do you have any suggestions. , mom of 7 mos,

ox phos, mito disorder and Garret 5yrs, cardiac prob not yet dx mito

[Guest guest]

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Hi

You might ask your pedi to check his urine Ph at the same time as his

blood electrolytes. My DD has renal tubular acidosis and doesn't

recycle electrolytes as she should. There's medication for it and it

makes a big difference in the electrolyte levels. We started out

giving the pedialyte as you have, but it isn't enough. It's worth a

shot to have the routine urine test done. If the urine PH is high

and the CO2 in the blood is low then it means there's a problem.

Good Luck

Heidi, 's Mom

-- In Mito , " morganmito " wrote:

>

> Our son morgan is diagnosed with an unspecified mito disorder.

Lately

> he has been having trouble eating. He is now 7 months old and is

> regressed to total bottle feeding. He is also having trouble with

his

> electrolyte balance. We have taken it upon ourselve to mix his

> formula with pedialyte in hopes to remedy the constant sodium

> depletion. Our doctor has no suggestions and we are not receiving

> any response from our doctors at Duke. Does any one else have this

> problem? Do you have any suggestions. , mom of 7 mos,

> ox phos, mito disorder and Garret 5yrs, cardiac prob not yet dx mito