in Japan-rice diet versus formulas

[Guest guest]

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)