diet for a child with Cystic fibrosis

[Guest guest]

hello everyone,

we are new here

i have an 18.5 month son with Cystic Fibrosis- genetic disease,

usually involving lungs, digestive system, sometimes leads to

diabetes, all due to a defective chloride channel which makes mucous

sticky. mucous plugs pancreas leading to pancreatic insufficiency,

traps bacteria in lungs, etc.

the hallmark of CF is inflammation. there seems to be an imbalance of

essential fatty acids (due to intestinal inflammation? poor

absorption?) that perpetuates the vicious circle

unchartered territory really, but theoretically, diets decreasing

inflammation should be very helpful

also, nutrition is crucial to proper growth and lung health

to me that means that every bite should be packed with nutrients-

that's why I am here to learn from all of you

anybody else here with CF?

i have come across a website describing Weston Price diet and it

sounds like something that could be beneficial in CF. even

concentional advice is in favor of high fat for cf'ers but they don't

seem to make a distinction between different fats... so our dietician

is pushing for canola, ice cream, peanut butter... which i am dead

set against.

i have ordered my copy of 'nourishing traditions', but was wondering

whether meanwhile i could get some ideas from you folks...

any comments/suggestions would be much appreciated!

here's my son's diet in a nutshell:

nurses 4-5 times a day, I take cod liver oil (molecularly distilled,

anything against it?)

loves meat (organic beef and bizon, stew or steak)

soup with salmon (wild sockey,canned), quinoa, organic vegetables,

garlic, herbs, olive oil

grains: wild rice and quinoa, I boil/steam them, is there a better

way? how do you soak them?

fresh fruit and berries

pumpernickel bread (100% rye, flax seed, bacterial culture, spring

water)

RO water with cell food and sea salt

zero sugar, refined/processed foods, dairy (not sure aboutthis one,

so am holding off as I am still breastfeeding him), wheat

supplements:

digestive enzymes (he is pancreatic insufficient)

CF vitamins (water soluble A<D<E,K, minerals, etc)

Zantac to reduce stomach acidity (also unfortunatley necessary for CF)

super DHA

probiotic

elderberry

ora Liv (raw liver extract)

ora Pancreas (raw pancreas)

ora kidney 9raw kidney)

vit C (sodium ascorbate form)

Kyolic garlic drops

cellfood

sea salt

[Guest guest]

I recently read an article about salt treatments for CF that were

supposed to make a really big difference. I'll try to find it for

you, but in the meantime, you could look up " salt pipes " which are

also raved about.

- Renate

>

> hello everyone,

> we are new here

> i have an 18.5 month son with Cystic Fibrosis- genetic disease,

> usually involving lungs, digestive system, sometimes leads to

> diabetes, all due to a defective chloride channel which makes

mucous

> sticky. mucous plugs pancreas leading to pancreatic insufficiency,

> traps bacteria in lungs, etc.

> the hallmark of CF is inflammation. there seems to be an imbalance

of

> essential fatty acids (due to intestinal inflammation? poor

> absorption?) that perpetuates the vicious circle

> unchartered territory really, but theoretically, diets decreasing

> inflammation should be very helpful

> also, nutrition is crucial to proper growth and lung health

> to me that means that every bite should be packed with nutrients-

> that's why I am here to learn from all of you

>

> anybody else here with CF?

>

> i have come across a website describing Weston Price diet and it

> sounds like something that could be beneficial in CF. even

> concentional advice is in favor of high fat for cf'ers but they

don't

> seem to make a distinction between different fats... so our

dietician

> is pushing for canola, ice cream, peanut butter... which i am dead

> set against.

>

> i have ordered my copy of 'nourishing traditions', but was

wondering

> whether meanwhile i could get some ideas from you folks...

>

> any comments/suggestions would be much appreciated!

>

> here's my son's diet in a nutshell:

> nurses 4-5 times a day, I take cod liver oil (molecularly

distilled,

> anything against it?)

> loves meat (organic beef and bizon, stew or steak)

> soup with salmon (wild sockey,canned), quinoa, organic vegetables,

> garlic, herbs, olive oil

> grains: wild rice and quinoa, I boil/steam them, is there a better

> way? how do you soak them?

> fresh fruit and berries

> pumpernickel bread (100% rye, flax seed, bacterial culture, spring

> water)

> RO water with cell food and sea salt

>

> zero sugar, refined/processed foods, dairy (not sure aboutthis

one,

> so am holding off as I am still breastfeeding him), wheat

>

> supplements:

> digestive enzymes (he is pancreatic insufficient)

> CF vitamins (water soluble A<D<E,K, minerals, etc)

> Zantac to reduce stomach acidity (also unfortunatley necessary for

CF)

> super DHA

> probiotic

> elderberry

> ora Liv (raw liver extract)

> ora Pancreas (raw pancreas)

> ora kidney 9raw kidney)

> vit C (sodium ascorbate form)

> Kyolic garlic drops

> cellfood

> sea salt

>

[Guest guest]

Found it!

http://www.medpagetoday.com/InfectiousDisease/URItheFlu/tb/2510

- Renate

>

> hello everyone,

> we are new here

> i have an 18.5 month son with Cystic Fibrosis- genetic disease,

> usually involving lungs, digestive system, sometimes leads to

> diabetes, all due to a defective chloride channel which makes

mucous

> sticky. mucous plugs pancreas leading to pancreatic insufficiency,

> traps bacteria in lungs, etc.

> the hallmark of CF is inflammation. there seems to be an imbalance

of

> essential fatty acids (due to intestinal inflammation? poor

> absorption?) that perpetuates the vicious circle

> unchartered territory really, but theoretically, diets decreasing

> inflammation should be very helpful

> also, nutrition is crucial to proper growth and lung health

> to me that means that every bite should be packed with nutrients-

> that's why I am here to learn from all of you

>

> anybody else here with CF?

>

> i have come across a website describing Weston Price diet and it

> sounds like something that could be beneficial in CF. even

> concentional advice is in favor of high fat for cf'ers but they

don't

> seem to make a distinction between different fats... so our

dietician

> is pushing for canola, ice cream, peanut butter... which i am dead

> set against.

>

> i have ordered my copy of 'nourishing traditions', but was

wondering

> whether meanwhile i could get some ideas from you folks...

>

> any comments/suggestions would be much appreciated!

>

> here's my son's diet in a nutshell:

> nurses 4-5 times a day, I take cod liver oil (molecularly

distilled,

> anything against it?)

> loves meat (organic beef and bizon, stew or steak)

> soup with salmon (wild sockey,canned), quinoa, organic vegetables,

> garlic, herbs, olive oil

> grains: wild rice and quinoa, I boil/steam them, is there a better

> way? how do you soak them?

> fresh fruit and berries

> pumpernickel bread (100% rye, flax seed, bacterial culture, spring

> water)

> RO water with cell food and sea salt

>

> zero sugar, refined/processed foods, dairy (not sure aboutthis

one,

> so am holding off as I am still breastfeeding him), wheat

>

> supplements:

> digestive enzymes (he is pancreatic insufficient)

> CF vitamins (water soluble A<D<E,K, minerals, etc)

> Zantac to reduce stomach acidity (also unfortunatley necessary for

CF)

> super DHA

> probiotic

> elderberry

> ora Liv (raw liver extract)

> ora Pancreas (raw pancreas)

> ora kidney 9raw kidney)

> vit C (sodium ascorbate form)

> Kyolic garlic drops

> cellfood

> sea salt

>

[Guest guest]

Cystic fibrosis patients have *seriously* depleted levels of vitamin

A. Their vitamin A levels are inversely proportional to their

C-reactive protein levels, which is a marker of inflammation, and the

ones with the highest vitamin A levels have the best health measured

by a variety of parameters.

The cod liver oil is probably a good idea, but he probably needs a lot

of it, and the high-vitamin variety.

Have you tested his serum retinol levels?

I posted an abstract on this about a month ago. You could search

www.onibasu.com for it.

Chris

--

Dioxins in Animal Foods:

A Case For Vegetarianism?

Find Out the Truth:

http://www.westonaprice.org/envtoxins/dioxins.html

[Guest guest]

Curcumin (tumeric) is the latest excitement – proven in the lab but not

complete human trials yet --- you can’t really get enough in your food.

Supps of 1 to 4 grams per day are used in studies.

 

Rescue of {Delta}F508-CFTR by curcumin: involvement of the keratin 18

network. J Pharmacol Exp Ther. 2006 Jan 19; [Epub ahead of print]

OBJECTIVE:................... Recently, curcumin was shown to rescue

DeltaF508-CFTR localization and function. In our previous work, the keratin

18 network was implicated in DeltaF508-CFTR trafficking. Here, we

hypothesized that curcumin could restore a functional DeltaF508-CFTR to the

plasma membrane acting via the K18 network. ................ With these

results, we propose K18 as a new therapeutic target and curcumin and/or its

analogs might be considered as potential therapeutic agents for cystic

fibrosis.

Curcumin inhibits platelet-derived growth factor-stimulated vascular smooth

muscle cell function and injury-induced neointima formation. Arterioscler

Thromb Vasc Biol. 2006 Jan;26(1):85-90. Epub 2005 Oct 20.

OBJECTIVE: .................. Curcumin (diferuloyl methane), a major

component of the spice turmeric (Curcuma longa), has been shown recently to

have beneficial effects in chronic conditions, such as inflammation, cancer,

cystic fibrosis, and Alzheimer's disease. The objective of this study was to

investigate the ability of curcumin to inhibit PDGF-stimulated migration,

proliferation, and collagen synthesis in cultured VSMCs and neointima

formation after carotid artery injury in rats. ............ CONCLUSIONS:

These data suggest that curcumin is a potent inhibitor of key

PDGF-stimulated VSMC functions and may play a critical role in regulating

these events after vascular injury.

--

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