Re: in Japan-rice diet versus formulas

March 21, 2005

Hi Debi

My son Liam is also 3.5 years(4 in June) I think i do remember

from when we first started on this list. We live in Australia.

Sounds like you have had a hard couple of years, and I hope james is

out of hospital soon.

How are you feeding this macrobiotic diet, are you blending

and putting it through the tube???

Im afraid i have no words of wisdom, Liam is allergic to milk and

has been on neocate(elemental formula) since he was very young, we

dont have to many problems with it.

i do know of children who have this reaction after so long on the

same formula, have you read any of the papers on the website www.new-

vis.com (I will have to check thats right, let me know if you cant

find it)

Liam started growth hormone about 4 months ago, he was 10.5kg and

83cm then and is now 11.2kg and 86cm. We have had great results very

quickly. Do you think its because isnt getting enough calories

that the growth hormone isnt working?

Id love to hear more about james as Liam and him are the same age,

please keep us posted and email privately if you like.

Good luck

Jody(mum to Liam and Cameron 6)

> 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)

>

March 21, 2005

I absolutely remember you! This is Jen Salem here. I still

remember sitting in with you when you brought all the photos of your

son to Dr. H at the convention, because your son was too small to

travel from Japan.

Unfortunately, I have absolutely ZERO background in allergies,

intolerances, etc. So hopefully someone else can help you.

I can tell you that he is obviously significantly underweight. I am

guessing his blood sugars do much better with the brown rice, etc.

because they are providing the glycogen storage that he so

desperately needs. The thinner they are, especially with low body

fat, and when their head is larger, the faster they burn through

their glycogen storage. These are the kids who truly have to eat

complex carbos low on the Glycemic Index literally every 60-90

minutes (my daughter is one of these kids). Things with sugar cause

my daughter's BSLs to become eradic as well.

The milk situation I have NO idea about, though. How much will he

take by mouth?

He sounds like he desperately needs a comprehensive GI and

nutritional workup. Can he get that in Japan?

Re the growth hormone, Dr. H's results are very clear that a lack of

proper caloric intake will significantly hinder the success of

growth hormone. After two years of Stanhope coming to our

convention as well, guess what he just wrote in his

latest " treatment of RSS paper " (not published yet, I got an advance

review) -- sufficient caloric intake is first priority before

starting growth hormone!

Incredible! We are changing the world, one step at a time!!!!

So I would say that the GH is probably not working because simply

can't grow on air. (a phrase Dr. H uses a lot). What does his

endocrinologist say?

Salem (, age 9)