Re: Protein diet?

[Guest guest]

Why doesn't he eat textured foods? Does he have sensory issues? I ask this

because my daughter did and she wouldn't touch anything but stage 1 and stage

2 baby foods until we started seeing a OT who helped us with sensory

problems. Now she eats table foods. It took her a long time and lots of

brushing. We started by adding small amounts of wheat germ to her baby foods

and gradually increasing how much we put in. Eventually, she was tolerating

a several teaspoons. I don't know about the protein thing but my daughter

had a B12 deficiency, which is found in meat products, and once we

supplemented her with B12 she improved dramatically. Just some food for

thought. Best of luck to you.

cathy mom to mackenzie 22months unknown dx. hypotonia, global delays,

microcephaly

[Guest guest]

Lori,

The only mito disorder I know of which benefits from the ketogenic diet is

Pyruvate dehydrogenase deficiency.

The diet is actually used for the control of some forms of epilepsy, so for

our daughter it has a double effect!

Sea

Mum to Gaby, Pyruvate Dehydrogenase deficiency, Gastrostomy, ketogenic

diet, global delays..

Protein diet?

(age 15 mos.) has not yet had an MRI and muscle biopsy but mito is

suspected at this time. He experiences a lot of lethargy and also has very

poor growth. I have seen a couple posts here about the ketogenic diet.

What is that? And, what disorders is it prescribed for? I ask because

's diet consists mostly of carbs (plus isomil forumula) and while the

amount seems to be sufficient, he fails to grow and has fallen off the

charts. I recently started giving him baby meats and discovered that he

always perks up about 1/2 hour after eating them whereas with other foods I

do not see a change in activity and demeanor. Not sure if this is a

coincidence or not. Anyone have any experience with this? Also,

does not eat textured foods. Is there anything other than the baby meats

that is high in protein? Thanks, Lori and (15 mos., hypotonia,

GERD, dev. delay, visual probs., maybe mito)

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

by mitochondrial disease.

[Guest guest]

Lori,

Soy is a good source of protien. You could give him soy milk and many soy products (if he can tolerate and is not allergic to them). Just give them in moderation, like anything. I think the key is balance. Too many carbs can cause a sugar imbalance, but, so can too few. You could also make him drinks using protien powder. I don't know much else, other than meat itself, that would supply him with a good source of protien. Anyway, I hope this helps. I, too, am struggling with balancing my own diet (and I am 28 years old!). It's so hard when I really don't know the guidelines for a healthy diet for those with mito disorders. Everyone is so different and I guess you just have to do trial and errors to discover what works for each individual. But good luck to you.

Does anyone out there know of a website on mito that gives diet guidelines????? Maybe we should get together and come up with one!

Just a thought.

Jayne

[Guest guest]

Thanks . We have tried the wheat germ and he does tolerate small

amounts of it mixed with purees. Yes, his issues seem to be sensory

related. He is afraid that he's going to gag on textured foods. He finds

the chuncky bits and spits them out. What did you try after the wheat

germ? I've tried going to stage 3 foods and he still won't take them.

What kind of brushing did you do? Do you mean on his gums? What did you

use? Thanks for the info!!!!!

Lori and (undiagnosed, hypotonia, GERD, visual probs, dev delay)

----------

> From: gbrody96@...

> To: Mitoegroups

> Subject: Re: Protein diet?

> Date: Tuesday, November 07, 2000 9:42 PM

>

> Why doesn't he eat textured foods? Does he have sensory issues? I ask

this

> because my daughter did and she wouldn't touch anything but stage 1 and

stage

> 2 baby foods until we started seeing a OT who helped us with sensory

> problems. Now she eats table foods. It took her a long time and lots of

> brushing. We started by adding small amounts of wheat germ to her baby

foods

> and gradually increasing how much we put in. Eventually, she was

tolerating

> a several teaspoons. I don't know about the protein thing but my

daughter

> had a B12 deficiency, which is found in meat products, and once we

> supplemented her with B12 she improved dramatically. Just some food for

> thought. Best of luck to you.

>

> cathy mom to mackenzie 22months unknown dx. hypotonia, global delays,

> microcephaly

>

>

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

affected by mitochondrial disease.

[Guest guest]

Lori,

Have you tried Peanut butter (creamy)? It's a good source of protien. Just try a little at a time. I give it to my daughter on a spoon and she loves it. It also helps with her speech a little by stimulating different muscles in her mouth. We also use something called a nook toothbrush on her during therapy. I will try to find out where to get them, but they have worked great at desensitizing her mouth. She is talking more now (actually babbling) than ever before.

I hope you find something that works!

Jayne

[Guest guest]

Lori Cutillo wrote:

> I have seen a couple posts here about the ketogenic diet.

> What is that? And, what disorders is it prescribed for?

Ketogenic diet is usually prescribed for uncontrollable seizures, as there is

something about the state of

ketosis that seems to relax that part of the brain that induces seizures. Not a

scientific explanation,

but being in ketosis, seems to control seizures in those that otherwise aren't

controlled.

It used to be thought that the ketogenic diet was somewhat riskier for those

with metabolic disease and if

your confirmed with mito, it is usually initiated under close supervision in the

hospital. This is

because it forces the body to metabolize fats, and rely on that for energy, and

if you have a defect in

fat metabolism, this could be quite dangerous. It also restricts carbs, and for

some with mito, they are

thought to need more carbs to supply the energy they need.

Having said that, I think that the trend towards diet has changed over the past

few years. It is very

clear that defects vary from individual to individual and that depending upon

which defect you or your

child have, one type of diet may be beneficial, and another deterimental. It is

a very individual thing,

and that diet does seem to impact some people significantly. The age of the

child also has an impact on

what type of diet as well. Children of younger ages just need more carbs than

those of us that are older.

Our experience has been much as you describe, although we don't use the

ketogenic diet. But for years, we

pushed the high carbs and my youngest was fed primarily with formula until she

was about 5 or 6. She

always did better when we could " feed " her regular food, vs. just the formula,

and in the past couple

years we have noted that we all feel better by boosting our protein and fat, and

cutting back on carbs,

especially early in the day. At bedtime, we carb load, especially my daughter,

so she can get thru the

night with stable blood sugar. But what we discovered was that we all had more

energy, and were less

draggy. Blood sugars were more stable, and all around we just feel better. My

other children and myself

are all presumed to have complex IV deficiency, and my youngest has been biosped

and diagnosed.

There are others on the list who have clearly found that one food group or

another seems to be of benefit

and that symptoms seem to be worse with another food group. I would advise you

to talk to your

pediatrician about your son's diet, and do a little

" controlled " experimemtation and see if you can document the difference, with

his guidance. Protein works

well for us, but too much protein can damage the kidneys. We seem to do well

with a higher percentage of

fat, yet many of the mito docs recommend low fat.

We have worked with our mito doc, and our pediatrician to come up with a diet

that works for us. But

basically we arrived at that diet, but experimenting with different types of

diets and logging the

results. For us it was pretty cut and dried, with regard to symptoms, but we

also did labs to ensure that

we were heading in the right direction.

> Is there anything other than the baby meatsthat is high in protein?

Peanut butter, and cheese as well as eggs. We also used a high protein drink

for my daughter that was low

in carbs, to supplement her diet. However, we also did this under the

supervision of our pediatrician.

Hope this helps,

Jeannine

[Guest guest]

> (age 15 mos.) has not yet had an MRI and muscle biopsy but

mito is

> suspected at this time. He experiences a lot of lethargy and also

has very

> poor growth. I have seen a couple posts here about the ketogenic

diet.

> What is that? And, what disorders is it prescribed for? I ask

because

> 's diet consists mostly of carbs (plus isomil forumula) and

while the

> amount seems to be sufficient, he fails to grow and has fallen off

the

> charts. I recently started giving him baby meats and discovered

that he

> always perks up about 1/2 hour after eating them whereas with other

foods I

> do not see a change in activity and demeanor. Not sure if this is a

> coincidence or not. Anyone have any experience with this? Also,

> does not eat textured foods. Is there anything other than the baby

meats

> that is high in protein? Thanks, Lori and (15 mos.,

hypotonia,

> GERD, dev. delay, visual probs., maybe mito)

Lori,

My son has been on the ketogenic diet since 4/00. It is for the

treatment of seizures. The diet is very high in fat, and very low in

carbs and protein. A very strict diet which was initiated in the

hospital. If you have any more questions on the ketogenic diet, I'd

be glad to help you out.

[Guest guest]

Dear Lori:

I know you said doesn't eat textured foods. How much textured does a

food need to be before he

doesn't eat it? Some foods high in protein would be cheese products. Maybe you

could get a baby grinder

or blend his food a little more with his formula so it is a little less

textured. Another thing would be

protein powders that you can get at health food stores. You could check out

vegetarian stuff that has

protein in it, too. But just grind up the food so it doesn't have much of a

texture to it. Eggs are

another source of protein. Good luck. Experiment alittle and may be he will

start to like alittle bit of

texture. It's getting use to that feeling in his mouth. Try to get the food

more into the pocket of his

cheeks so he needs to chew. I needed to do that with Leah when I need to have

her try a new food or

texture.

Nerenhausen mom to Leah 2 1/2

Lori Cutillo wrote:

> (age 15 mos.) has not yet had an MRI and muscle biopsy but mito is

> suspected at this time. He experiences a lot of lethargy and also has very

> poor growth. I have seen a couple posts here about the ketogenic diet.

> What is that? And, what disorders is it prescribed for? I ask because

> 's diet consists mostly of carbs (plus isomil forumula) and while the

> amount seems to be sufficient, he fails to grow and has fallen off the

> charts. I recently started giving him baby meats and discovered that he

> always perks up about 1/2 hour after eating them whereas with other foods I

> do not see a change in activity and demeanor. Not sure if this is a

> coincidence or not. Anyone have any experience with this? Also,

> does not eat textured foods. Is there anything other than the baby meats

> that is high in protein? Thanks, Lori and (15 mos., hypotonia,

> GERD, dev. delay, visual probs., maybe mito)

>

>

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

by mitochondrial disease.