Re: Re: Glenna/diet/mito disorders

[Guest guest]

Barb-there is a little girl, newly diagnosed with a " mito-Disease " --do not

know the type

In fact I believe she is seeing the same Neuro as Jake

in Mass.

She now lives in Fl.

She was told the Keto diet can make things worse

YET her daughter NEVER did great with the diet

I will try to get ahold of her

Maybe the two of you can help each other

She is a former NICU nurse, and is now a school nurse in Fl.

I know she has names of some Docs to see,specializing in Mito D.

I will ask her if I can give you her E-mail address if you think this may help

Best to you

Sandi

[Guest guest]

That is my general thought as well. I think if the diet was " dangerous " for

Jake, he'd have been a lot worse off up front. And his mito disorder is not a

confirmed diagnosis until we get DNA back, even though the muscle biopsy is

abnormal. He may just have some type of mitochondrial effect from a different

disease of sorts. We'll see. However, if he does test positive for mito you

have to wonder what role the diet is playing, postive or negative. He's been on

it 7 years. Of course, I've also read, mito disease kids should never be

fasted. Great. He's been in a state of fasting for 7 years!

Anyway, Glenna, please don't knock yourself out on surfing through all those

articles....it would be a full time job! If you run across anything specific on

diet and contraindications for mito disorder...by all means send them

along....but only if you happen to be looking. I also did some surfing last

night and yes, Meredith, you are correct, the diet is actually used as treatment

for some mito diseases as well.

My overriding concern is the comment in the last article about deterioration

regarding the diet used in conjunction w/ mito disease. Wondering which mito

disease that is?

I think that's why our mito guy is confused. Jake just doesn't fit the complete

mito disease picture....party because of the diet, etc.

Why are things always this complicated!!!!!!

Barb Swoyer, Jake's mom

Barb/Jake and anyone about metabolic

disorders

>

>

> Hi,

> I was looking for a research article to critique for one of my

> classes last night and came across this. You may have seen it

> already. Table 1 (near the end, just before the references)

lists

> some diseases that could deteriorate on the diet, listing

> mitochondrial disorders as one.

>

> Glenna

>

> Table 1. Diseases That Could Deteriorate on the Ketogenic Diet

> Porphyria

> Pyruvate carboxylase deficiency

> Unrecognized carnitine deficiency

> Defects in fatty acid oxidation

> Mitochondrial disorders

>

>

>

>

>

>

[Guest guest]

Sure, thank you.

If you email her, ask who she saw.

We see Dr. Basil Darras at Boston CH, and Dr. Mark Korson at New Eng. Med. Ctr.

Barb

Re: Re: Glenna/diet/mito disorders

Barb-there is a little girl, newly diagnosed with a " mito-Disease " --do not

know the type

In fact I believe she is seeing the same Neuro as Jake

in Mass.

She now lives in Fl.

She was told the Keto diet can make things worse

YET her daughter NEVER did great with the diet

I will try to get ahold of her

Maybe the two of you can help each other

She is a former NICU nurse, and is now a school nurse in Fl.

I know she has names of some Docs to see,specializing in Mito D.

I will ask her if I can give you her E-mail address if you think this may help

Best to you

Sandi