Re: in Japan-rice diet versus formulas (Debi)

[Guest guest]

Hi Debi,

I found what you said about the fermented foods and miso very

interesting.

Our doctor is always emphasizing fermented foods and drinks for

their ease of digestion (especially aiding the digestion of

proteins), and also their high nutritional value. These type of

foods also aid in adding back pro-biotics (good bacteria) which are

so important in the compromised intestinal systems of RSS kids, so

we make sure our daughter gets a fair amount of these foods and it

has really helped.

Another key component of our daughter's diet is eating plenty of

homemade broths (chicken, meat & fish). She periodically eats miso

broth, which is the popular Japanese fish broth you mentioned.

These broths also help in the digestion of food while also calming

an inflamed digestive track that is frequently encountered in RSS.

When these broths are prepared, a gelatin is extracted from the

animal bones that is rich in the amino acid glycine, which helps in

the digestion by enhancing gastric acid secretion. A study in the

American Journal of Physiology found that gelatin promoted digestion

by boosting the secretion of gastric juices, bringing the amount of

hydrochloric acid in the stomach to normal levels. Without these

broths many people have a hard time converting from a diet high in

carbohydrates that spike the insulin levels. I use the broths for

soups, stews, sauces, and gravies.

Beth

> It is nearly 3 years since I posted here so I'm sure noone

remembers us. is 3.5 years, has RSS and some other still

undiagnosed gastro problems which have caused him severe problems.

He had a nissen/pyroplasty and G-tube placement at 1 year. His

doctors stopped him eating by mouth at 5 months and he has been

totally tube fed ever since. He has been on a whole range of

formulas/feeds during his life - pre-digested, elemental, milk, soy,

mixture based etc but he gets a severe reaction to all of them after

about 2.5 months, has to have complete stomach rest and then loses

any weight and more. Also when he is on formulas/feeds, his blood

sugar goes very low (around 40-50 - I think you divide by 18 to get

the US measurement). He has been on GH for 5 months now. He weighs 8

kilos (around 18 pounds?) and is 83 cm.

>

> 18 months ago he was so poor that I went off the rails. Because we

live in Japan, I researched and started on a macrobiotic diet

(brown rice, beans, vegetables, seaweeds etc). You can feed them

anything from fish to icecream but need to bear in mind the

ying/yang impact of the food. The only sugars reccommended are

things like fermented rice, rice syrup etc. did really well on

this diet in terms of his well being. His blood sugars have been

very stable, his pain and discomfort completely disappeared and he

has been able to go to nursery. He started walking. I'd be happy to

offer any information for those interested.

>

> has gained very little weight on this diet and so I have

relented and allowed a completely new set of doctors to put him back

on milks. He is now in hospital on MA-1 milk which is a milk based

formula for children with allergies. He is on continous pump feeding

24 hours. His blood sugars are back down low and he looks very grey

poor thing.

>

> Ah ah - at last now for the questions!

> Several key problems remain though and I wonder if anyone has

similar experiences.

> 1) has problems with proteins - he can cope with tofu,

beans, miso - the more fermented the better but really struggles

with other proteins. Hence the doctors feel he has some kind of

complicated non-immunoglobin allergy.

> 2) When we put in milks or anything with sugar in it, his blood

sugars go DOWN. When I put in brown rice (no sugar) his blood sugars

go back up and stay up for prolonged periods. He could go right

overnight without any food at all and still be fine in the morning.

> 3) How do you get a child who basically can't cope with proteins

or sugar to grow?

> 4) has been on GH for 5 months now with very little growth -

when does the growth spurt start to kick in? Is it worth taking if

calorie intake is clearly not being digested properly?

>

> I had a second child Sora (sky in japanese) 6 months ago and it is

really tough trying to look after her, pump breast milk also to give

to and be in the hospital all the time to help him. Any

suggestions would be very welcome.

>

> I have another question on pumps but will post separately.

> Many thanks

>

> Debi mother to (3.5 years, RSS, 8 kilos, 83 cm) and Sora (6

months, non rss, 8 kilos, 65 cm)

>

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