Re: in Japan-update/CNN dietary diversity-rotation diets

[Guest guest]

hello and everyone who always sends such kind messages to us here. This is

LONG but I hope might be useful for anyone whose child's reflux keeps recurring

or suffers periodic stomach pain/undetermined intestinal problems/and possibly

if UPD7 positive. ' case is so extreme but...

Sorry it has taken so long to reply to this. I wanted to reply to this and also

to the bit at the end of the CNN article on diversity.

I have to say that the issue of dietary diversity is really key for our children

I feel as well as the health of a general populus. For our kids, we all know how

hard it is to get them to experience a variety of foods if feeding by mouth. And

although a G-tube and supplementary tube feedings is a relief for many of us,

dietary diversity there is even harder.

I'm British and have been in Japan now for 12 years. The UK diet, particularly

in the north, was not great when I was a child. But here in Japan, even with

only a little money, there is so much variety - the rice is less processed. The

inclusion of seaweeds (all kinds now that taste really good and have no " urgh "

reactions!) to help get the most nutrients from secondary proteins such as

beans, the range of fish, the variety of complex carbohydrates in terms of

noodles, sushi, brown rice, rice balls, chahan, fried rice dishes are all

excellent. But over the past 5-7 years, I'm amazed at how much fatter young

adults have become - particularly girls - mainly due to the inclusion of pizza,

hamburgers and spaghetti/meat sauce in their diets. It is truly a shame.

As you know, is now nearly 100% tube fed - he suffers a severe 3-month

pain cycle where he reacts violently to any food that he has been given

exclusively over a long period. He does not show up postiive on any blood

allergy tests although endoscopies reveal some damage to his intestinal villi

suggesting milk and possibly soy allergies but no severe enough for celiac

disease. This is still unexplained. We have been to several doctors who say this

is just not possible. It has happened to now 13 times in his short 4 year

life. I, as a stubborn mother, have read extensively on food sensitivies and

feel that , although initially not allergic to anything - can/will develop

multiple sensitivies to foods used frequently. In his case this presents itself

in the form of gastro intestinal problems. Many ecological allergists insist

that this is not unusual. Their experience of 1000s of patients worldwide has

been that - basically any inherently sensitive individual - like our kids with

gastro problems - will almost definitely develop a reaction (or " allergy " in the

broad sense of the word) if they are fed one food exclusively over a long

period. The way this presents itself is varied. Documented symptoms are skin

reactions, poor weight gain, GI problems, stomach pain, behaviour problems.

In case, he starts out fine, gains weight well, gains some muscle strength

and energy. After 2.5 months on one food, it's almost as if a switch clicks on

and although I'm giving the same amount of food, the weight and muscle he had

gained literally disintegrates over a few week period. It's as if he gets to a

point where his body is saying it cannot adapt to the food any longer - glass is

getting full thing. Then, after 4 months, he slips into a severe pain period

where he is trying to wretch (can't vomit after nissen) and can't take part in

any activity. The last time this happened, I took a video of it since his old

and new doctor were soooo sceptical. As soon as I stop the milk and change the

pump contents to a sugar solution or rice milk or breast milk, he perks up

exactly as if giving water to a wilting plant. The difference is truly

astonishing even within 1 hour, even better over 24 hours and better still once

all of the offending food is out of the system within 3-4 days.

Having been literally thrown out of our last hospital when was at his

lowest point in July, I was truly petrified of being left with noone to help us

and a seriously ill child. I decided again to take ' diet into my own

hands. We were referred to a new hospital where the GI doctor once again is

frustrated that we don't want to shift the whole of ' care there - they

have no former RSS patients, and certainly noone with such rare issues as .

We therefore returned to his original hospital - The National Children's

Hospital of Japan - and they agreed to help us put on a formula rotation

diet.

That was 2 months ago. They have no experience of rotation diets but the

nutritionist there helps me to ascertain what exactly is in the formulas - hard

to imagine for folk in the US where disclosure is so good - that is an

impressive feat in itself. And endocrinologist has agreed to take him into

hospital once per month for a 24 hour drip and stomach rest session. There are

limited formulas here and all are basically milk protein.

The way the diet works is similar to the principle for treating children with

traditional allergies by mouth, but it is with formulas. The idea is to ensure

that any protein source (and carbohydrate source if possible) is only used once

in every four days. The benefits of this are supposedly twofold:

1) if your child is sensitive to any one food source, it is much easier to

pinpoint since introducing that food only once every four days is the optimum

time to a) avoid an addiction effect to the food thus masking a sensitivity,

highlight a sensitivity because there is just enough of the food, eaten just

often enough to make a sensitivity obvious. (It takes 24 hours for food to pass

into stool and 3 days to metabolize completely through the body - hence the

4-day rotation schedule)

2) If you continue this diet for a period (minimum 6 months - indefinitely), you

can either help your child get over the things he/she is sensitive to and/or

help avoid developing sensitivies to other foods eaten when the body is tired

out.

' individual diet at present stands as follows:

Day 1: Merufi - a Japanese infant formula made essentialy with a whey protein -

hydrolized (milk is made up of 80% casein (the curd part) and 20% whey - the

liquidy part - Peptamen Junior is a whey protein, maltodextrin formula and I

know many US kids are on this)

Day 2: Compleat Paedriatric - a US junior formula from Novartis - now based on

chicken protein, grean pea puree and cranberry fruit puree. (I have to import

this and it is used for folk who can't cope exclusively with milk formulas or

synthetically generated formulas)

Day 3: Bonrakuto - a Japanese infant formula - soy protein based - predigested

Day 4: MA7 - a Japanese high-calorie liquid feed based on skimmed milk powder

and casein protein (the dominant milk protein)

So far is doing well on this diet but the crucial 2.5 month time point is

still to come. Already I have noticed that he copes less well on Day 4 which is

a milk formula that is less digested than others. The differences are in stool

formation (more runny) and a tendency to swallow and cough a bit as if he is

having some reflux or stomach trouble coping with the food. He also displays a

heightened sensitivity to sunlight.

I also include 200cc of breast milk (to help metabolism and line the intestinal

wall) and 200 cc of rice dream milk (to help maintain stable blood sugar) and 4

g of maltodextrin powder (ditto).

Some people doing this diet opt for a 7 day rotation to make planning easier on

a weekly basis. Anything between 5 and 12 is considered acceptable to fulfill

the advantages 1 and 2 above. I'd like to expand the number of feed days to 7

but there are obvious limitations with formulas - nearly all are milk based and

contain corn in some form be it corn oil, dextrin, sucrose, etc. Blenderizing

formulas enough to get through a pump has so far proved too much of a challenge

since at present is on continuous feeding. Still the addition of apple,

pear, pineapple or avocado to a blenderized meal is a great way to break down

the proteins to a smooth enough form to get natural ingredients through the

tube. I also use Imagine Foods Rice Dream organic brown rice milk to help

blenderize foods. I'm still working on that one but am blessed to have so many

options here including miso bean paste, ground fish powder etc as good

alternative protein sources.

As a footnote: is UPD7 positive. The UPD7 chromozone is supposed to help

regulate the gut and intestinal function. I have found that breast milk helps

greatly here. According to our Japanese endocrinologist, apparently, breast milk

- especially in the early months - contains EGF factor? (not sure of the term)

which is incorporated on the UPD7 chromozone. This is key for digestion. Hence

anyone without this could have problems. Any new mums out there might want to

express and include this in their RSS child's diet. I added 300 or 400 mls per

day at first, and now include 200 cc per day. It has made a great difference to

how efficiently digests/metabolizes food.

I'll keep everyone posted on how things go from there. Japanese doctors are very

detailed and competent in the field of research but I wish I had more practical

experience around me and more open minds. A couple of years ago, I put on

a macrobiotic diet for 18 months - his quality of life was great but I was

criticised so strongly that in the end I gave in. It is truly a heavy

responsibility to take the entire job of diets for our children into your own

hands. I have applied for an appointment with Dr H. as she definitely does have

the most concentrated RSS patient list in the world, but I'm still awaiting a

response.

all the best to all - must get back to my day job - am translating blurb on

japnaese beauty products for the Russia market......strange to be so grateful

for a bit of " mundane " ...

Debi

mum to in Japan.

3 years 11 months, RSS, 10.5 kilos, 88 cms (still measured lying down here until

get to 90 cms!), GH, allergies...?, etc.

Re: Zantac...has it made reflux worse?

Hi Debi,

I have been wondering about ! How is he doing? New allergies

or is he past the 3 months stage on his current diet? How is new

baby?

, mom to and Emerence

[Guest guest]

Deb -

WOW! This is incredible! As I was reading your email, I am

thinking " how can I incorporate this into the Guidebook. " I

probably won't, but will save the information so that any other

complicated child that comes along can be send your contact info and

your information.

It all seems to make sense, when I think about it. My RSS child who

isn't G-tube fed doesn't eat the same foods every day. She varies

all the time. If you are tube-fed formula, and the same formula day

after day after day, it sure makes sense that your body might end up

refusing it in some way or another -- whether developing an allergy,

a resistance, whatever. Hmmmm.

I am sure you are keeping a detailed log. Please keep us posted!!!

As always, you are in my prayers.

>

> hello and everyone who always sends such kind messages to us

here. This is LONG but I hope might be useful for anyone whose

child's reflux keeps recurring or suffers periodic stomach

pain/undetermined intestinal problems/and possibly if UPD7 positive.

' case is so extreme but...

>

> Sorry it has taken so long to reply to this. I wanted to reply to

this and also to the bit at the end of the CNN article on diversity.

> I have to say that the issue of dietary diversity is really key

for our children I feel as well as the health of a general populus.

For our kids, we all know how hard it is to get them to experience a

variety of foods if feeding by mouth. And although a G-tube and

supplementary tube feedings is a relief for many of us, dietary

diversity there is even harder.

>

> I'm British and have been in Japan now for 12 years. The UK diet,

particularly in the north, was not great when I was a child. But

here in Japan, even with only a little money, there is so much

variety - the rice is less processed. The inclusion of seaweeds (all

kinds now that taste really good and have no " urgh " reactions!) to

help get the most nutrients from secondary proteins such as beans,

the range of fish, the variety of complex carbohydrates in terms of

noodles, sushi, brown rice, rice balls, chahan, fried rice dishes

are all excellent. But over the past 5-7 years, I'm amazed at how

much fatter young adults have become - particularly girls - mainly

due to the inclusion of pizza, hamburgers and spaghetti/meat sauce

in their diets. It is truly a shame.

>

> As you know, is now nearly 100% tube fed - he suffers a

severe 3-month pain cycle where he reacts violently to any food that

he has been given exclusively over a long period. He does not show

up postiive on any blood allergy tests although endoscopies reveal

some damage to his intestinal villi suggesting milk and possibly soy

allergies but no severe enough for celiac disease. This is still

unexplained. We have been to several doctors who say this is just

not possible. It has happened to now 13 times in his short 4

year life. I, as a stubborn mother, have read extensively on food

sensitivies and feel that , although initially not allergic to

anything - can/will develop multiple sensitivies to foods used

frequently. In his case this presents itself in the form of gastro

intestinal problems. Many ecological allergists insist that this is

not unusual. Their experience of 1000s of patients worldwide has

been that - basically any inherently sensitive individual - like

our kids with gastro problems - will almost definitely develop a

reaction (or " allergy " in the broad sense of the word) if they are

fed one food exclusively over a long period. The way this presents

itself is varied. Documented symptoms are skin reactions, poor

weight gain, GI problems, stomach pain, behaviour problems.

>

> In case, he starts out fine, gains weight well, gains some

muscle strength and energy. After 2.5 months on one food, it's

almost as if a switch clicks on and although I'm giving the same

amount of food, the weight and muscle he had gained literally

disintegrates over a few week period. It's as if he gets to a point

where his body is saying it cannot adapt to the food any longer -

glass is getting full thing. Then, after 4 months, he slips into a

severe pain period where he is trying to wretch (can't vomit after

nissen) and can't take part in any activity. The last time this

happened, I took a video of it since his old and new doctor were

soooo sceptical. As soon as I stop the milk and change the pump

contents to a sugar solution or rice milk or breast milk, he perks

up exactly as if giving water to a wilting plant. The difference is

truly astonishing even within 1 hour, even better over 24 hours and

better still once all of the offending food is out of the system

within 3-4 days.

>

> Having been literally thrown out of our last hospital when

was at his lowest point in July, I was truly petrified of being left

with noone to help us and a seriously ill child. I decided again to

take ' diet into my own hands. We were referred to a new

hospital where the GI doctor once again is frustrated that we don't

want to shift the whole of ' care there - they have no former

RSS patients, and certainly noone with such rare issues as . We

therefore returned to his original hospital - The National

Children's Hospital of Japan - and they agreed to help us put

on a formula rotation diet.

>

> That was 2 months ago. They have no experience of rotation diets

but the nutritionist there helps me to ascertain what exactly is in

the formulas - hard to imagine for folk in the US where disclosure

is so good - that is an impressive feat in itself. And

endocrinologist has agreed to take him into hospital once per month

for a 24 hour drip and stomach rest session. There are limited

formulas here and all are basically milk protein.

>

> The way the diet works is similar to the principle for treating

children with traditional allergies by mouth, but it is with

formulas. The idea is to ensure that any protein source (and

carbohydrate source if possible) is only used once in every four

days. The benefits of this are supposedly twofold:

>

> 1) if your child is sensitive to any one food source, it is much

easier to pinpoint since introducing that food only once every four

days is the optimum time to a) avoid an addiction effect to the food

thus masking a sensitivity, highlight a sensitivity because there

is just enough of the food, eaten just often enough to make a

sensitivity obvious. (It takes 24 hours for food to pass into stool

and 3 days to metabolize completely through the body - hence the 4-

day rotation schedule)

>

> 2) If you continue this diet for a period (minimum 6 months -

indefinitely), you can either help your child get over the things

he/she is sensitive to and/or help avoid developing sensitivies to

other foods eaten when the body is tired out.

>

> ' individual diet at present stands as follows:

>

> Day 1: Merufi - a Japanese infant formula made essentialy with a

whey protein - hydrolized (milk is made up of 80% casein (the curd

part) and 20% whey - the liquidy part - Peptamen Junior is a whey

protein, maltodextrin formula and I know many US kids are on this)

>

> Day 2: Compleat Paedriatric - a US junior formula from Novartis -

now based on chicken protein, grean pea puree and cranberry fruit

puree. (I have to import this and it is used for folk who can't cope

exclusively with milk formulas or synthetically generated formulas)

>

> Day 3: Bonrakuto - a Japanese infant formula - soy protein based -

predigested

>

> Day 4: MA7 - a Japanese high-calorie liquid feed based on skimmed

milk powder and casein protein (the dominant milk protein)

>

> So far is doing well on this diet but the crucial 2.5 month

time point is still to come. Already I have noticed that he copes

less well on Day 4 which is a milk formula that is less digested

than others. The differences are in stool formation (more runny) and

a tendency to swallow and cough a bit as if he is having some reflux

or stomach trouble coping with the food. He also displays a

heightened sensitivity to sunlight.

>

> I also include 200cc of breast milk (to help metabolism and line

the intestinal wall) and 200 cc of rice dream milk (to help maintain

stable blood sugar) and 4 g of maltodextrin powder (ditto).

>

> Some people doing this diet opt for a 7 day rotation to make

planning easier on a weekly basis. Anything between 5 and 12 is

considered acceptable to fulfill the advantages 1 and 2 above. I'd

like to expand the number of feed days to 7 but there are obvious

limitations with formulas - nearly all are milk based and contain

corn in some form be it corn oil, dextrin, sucrose, etc.

Blenderizing formulas enough to get through a pump has so far proved

too much of a challenge since at present is on continuous

feeding. Still the addition of apple, pear, pineapple or avocado to

a blenderized meal is a great way to break down the proteins to a

smooth enough form to get natural ingredients through the tube. I

also use Imagine Foods Rice Dream organic brown rice milk to help

blenderize foods. I'm still working on that one but am blessed to

have so many options here including miso bean paste, ground fish

powder etc as good alternative protein sources.

>

> As a footnote: is UPD7 positive. The UPD7 chromozone is

supposed to help regulate the gut and intestinal function. I have

found that breast milk helps greatly here. According to our Japanese

endocrinologist, apparently, breast milk - especially in the early

months - contains EGF factor? (not sure of the term) which is

incorporated on the UPD7 chromozone. This is key for digestion.

Hence anyone without this could have problems. Any new mums out

there might want to express and include this in their RSS child's

diet. I added 300 or 400 mls per day at first, and now include 200

cc per day. It has made a great difference to how efficiently

digests/metabolizes food.

>

> I'll keep everyone posted on how things go from there. Japanese

doctors are very detailed and competent in the field of research but

I wish I had more practical experience around me and more open

minds. A couple of years ago, I put on a macrobiotic diet for

18 months - his quality of life was great but I was criticised so

strongly that in the end I gave in. It is truly a heavy

responsibility to take the entire job of diets for our children into

your own hands. I have applied for an appointment with Dr H. as she

definitely does have the most concentrated RSS patient list in the

world, but I'm still awaiting a response.

>

> all the best to all - must get back to my day job - am translating

blurb on japnaese beauty products for the Russia market......strange

to be so grateful for a bit of " mundane " ...

>

> Debi

> mum to in Japan.

> 3 years 11 months, RSS, 10.5 kilos, 88 cms (still measured lying

down here until get to 90 cms!), GH, allergies...?, etc.

>

> Re: Zantac...has it made reflux worse?

>

>

> Hi Debi,

>

> I have been wondering about ! How is he doing? New

allergies

> or is he past the 3 months stage on his current diet? How is

new

> baby?

>

> , mom to and Emerence

>

>

>

>

>

[Guest guest]

Deb

Thanks for sharing that with us.

I was hanging onto every word in your email. What a fantastic researcher you

are and how lucky your family is to have you in their corner!! Wow!

I only wish I knew some of that when Adam was a baby. I just slug along with

what I have (next to nothing!!)

I do believe though that kids should be introduced to foods and a wide

variety at an early age. Now that my kids are teenagers?? Well forget it, if

it doesn't look exactly like something they have already eaten, they won't

even try it. But then again, neither will I!!! So it's best to get them

young.

Thanks again for taking the time to share that with us. It was excellent.

Debby in Toronto

Re: Zantac...has it made reflux worse?

>

>

> Hi Debi,

>

> I have been wondering about ! How is he doing? New allergies

> or is he past the 3 months stage on his current diet? How is new

> baby?

>

> , mom to and Emerence

>

>

>

>

>

[Guest guest]

Debi,

Thank you for the very detailed information you have provided

regarding ' diet. It sounds like you have done a lot of

research.

My son, TJ, who is 6 has had a lot of GI issues. Recently after an

endoscopy revealed some abnormal cells he had some further testing.

The GI thought TJ might have eosinophilic gastroenteritis (he did

not). This can cause an allergic type reaction with a fair amount

of pain. Based on the degree of testing has had, I would

imagine this test has been conducted. If not it is a simple blood

test that can be performed to diagnosis this and medication is

available to treat it.

You make a good point about changing tube feeding formulas to avoid

a potential reaction. I have often thought of rotating formulas as

it can't be good to feed the same thing every single day for years

on end. Now that I have read your info. I am going to pursue this

with our GI and of course, Dr. H. who we are seeing next week.

How is your Infinity pump working? Did you get the mini backpack

yet? TJ has been carrying his Infinity in the mini backpack since

the Summer and it has been great. The backpack is just the right

size for him.

Hope all is well,

Meribeth

[Guest guest]

Hey Debi,

We have had a totally crazy week here so I haven't checked my

messages for a while so I am just getting caught up now. I found

your information very interesting and helpful as my son Josiah has

multiple food allergies and has an NG tube for over night and some

day time feeds as well. He was eating well by mouth but the last

couple of weeks he hasnt' been interested in food at all....he has

been throwing up alot....not everyday and no pattern but always

related to being fed. At the end of your post you mentioned the

benefits of breastfeeding and gut issues, and something clicked with

me, I weaned Josiah 2 1/2 weeks ago and I am wondering if this has

caused the increased the incidence of vomitting. Any insight woul be

great.

Mom to Josiah, 28 months, RSS, NG tube

>

> hello and everyone who always sends such kind messages to us

here. This is LONG but I hope might be useful for anyone whose

child's reflux keeps recurring or suffers periodic stomach

pain/undetermined intestinal problems/and possibly if UPD7 positive.

' case is so extreme but...

>

> Sorry it has taken so long to reply to this. I wanted to reply to

this and also to the bit at the end of the CNN article on diversity.

> I have to say that the issue of dietary diversity is really key for

our children I feel as well as the health of a general populus. For

our kids, we all know how hard it is to get them to experience a

variety of foods if feeding by mouth. And although a G-tube and

supplementary tube feedings is a relief for many of us, dietary

diversity there is even harder.

>

> I'm British and have been in Japan now for 12 years. The UK diet,

particularly in the north, was not great when I was a child. But here

in Japan, even with only a little money, there is so much variety -

the rice is less processed. The inclusion of seaweeds (all kinds now

that taste really good and have no " urgh " reactions!) to help get the

most nutrients from secondary proteins such as beans, the range of

fish, the variety of complex carbohydrates in terms of noodles,

sushi, brown rice, rice balls, chahan, fried rice dishes are all

excellent. But over the past 5-7 years, I'm amazed at how much fatter

young adults have become - particularly girls - mainly due to the

inclusion of pizza, hamburgers and spaghetti/meat sauce in their

diets. It is truly a shame.

>

> As you know, is now nearly 100% tube fed - he suffers a

severe 3-month pain cycle where he reacts violently to any food that

he has been given exclusively over a long period. He does not show up

postiive on any blood allergy tests although endoscopies reveal some

damage to his intestinal villi suggesting milk and possibly soy

allergies but no severe enough for celiac disease. This is still

unexplained. We have been to several doctors who say this is just not

possible. It has happened to now 13 times in his short 4 year

life. I, as a stubborn mother, have read extensively on food

sensitivies and feel that , although initially not allergic to

anything - can/will develop multiple sensitivies to foods used

frequently. In his case this presents itself in the form of gastro

intestinal problems. Many ecological allergists insist that this is

not unusual. Their experience of 1000s of patients worldwide has been

that - basically any inherently sensitive individual - like our kids

with gastro problems - will almost definitely develop a reaction

(or " allergy " in the broad sense of the word) if they are fed one

food exclusively over a long period. The way this presents itself is

varied. Documented symptoms are skin reactions, poor weight gain, GI

problems, stomach pain, behaviour problems.

>

> In case, he starts out fine, gains weight well, gains some

muscle strength and energy. After 2.5 months on one food, it's almost

as if a switch clicks on and although I'm giving the same amount of

food, the weight and muscle he had gained literally disintegrates

over a few week period. It's as if he gets to a point where his body

is saying it cannot adapt to the food any longer - glass is getting

full thing. Then, after 4 months, he slips into a severe pain period

where he is trying to wretch (can't vomit after nissen) and can't

take part in any activity. The last time this happened, I took a

video of it since his old and new doctor were soooo sceptical. As

soon as I stop the milk and change the pump contents to a sugar

solution or rice milk or breast milk, he perks up exactly as if

giving water to a wilting plant. The difference is truly astonishing

even within 1 hour, even better over 24 hours and better still once

all of the offending food is out of the system within 3-4 days.

>

> Having been literally thrown out of our last hospital when

was at his lowest point in July, I was truly petrified of being left

with noone to help us and a seriously ill child. I decided again to

take ' diet into my own hands. We were referred to a new

hospital where the GI doctor once again is frustrated that we don't

want to shift the whole of ' care there - they have no former

RSS patients, and certainly noone with such rare issues as . We

therefore returned to his original hospital - The National Children's

Hospital of Japan - and they agreed to help us put on a formula

rotation diet.

>

> That was 2 months ago. They have no experience of rotation diets

but the nutritionist there helps me to ascertain what exactly is in

the formulas - hard to imagine for folk in the US where disclosure

is so good - that is an impressive feat in itself. And

endocrinologist has agreed to take him into hospital once per month

for a 24 hour drip and stomach rest session. There are limited

formulas here and all are basically milk protein.

>

> The way the diet works is similar to the principle for treating

children with traditional allergies by mouth, but it is with

formulas. The idea is to ensure that any protein source (and

carbohydrate source if possible) is only used once in every four

days. The benefits of this are supposedly twofold:

>

> 1) if your child is sensitive to any one food source, it is much

easier to pinpoint since introducing that food only once every four

days is the optimum time to a) avoid an addiction effect to the food

thus masking a sensitivity, highlight a sensitivity because there

is just enough of the food, eaten just often enough to make a

sensitivity obvious. (It takes 24 hours for food to pass into stool

and 3 days to metabolize completely through the body - hence the 4-

day rotation schedule)

>

> 2) If you continue this diet for a period (minimum 6 months -

indefinitely), you can either help your child get over the things

he/she is sensitive to and/or help avoid developing sensitivies to

other foods eaten when the body is tired out.

>

> ' individual diet at present stands as follows:

>

> Day 1: Merufi - a Japanese infant formula made essentialy with a

whey protein - hydrolized (milk is made up of 80% casein (the curd

part) and 20% whey - the liquidy part - Peptamen Junior is a whey

protein, maltodextrin formula and I know many US kids are on this)

>

> Day 2: Compleat Paedriatric - a US junior formula from Novartis -

now based on chicken protein, grean pea puree and cranberry fruit

puree. (I have to import this and it is used for folk who can't cope

exclusively with milk formulas or synthetically generated formulas)

>

> Day 3: Bonrakuto - a Japanese infant formula - soy protein based -

predigested

>

> Day 4: MA7 - a Japanese high-calorie liquid feed based on skimmed

milk powder and casein protein (the dominant milk protein)

>

> So far is doing well on this diet but the crucial 2.5 month

time point is still to come. Already I have noticed that he copes

less well on Day 4 which is a milk formula that is less digested than

others. The differences are in stool formation (more runny) and a

tendency to swallow and cough a bit as if he is having some reflux or

stomach trouble coping with the food. He also displays a heightened

sensitivity to sunlight.

>

> I also include 200cc of breast milk (to help metabolism and line

the intestinal wall) and 200 cc of rice dream milk (to help maintain

stable blood sugar) and 4 g of maltodextrin powder (ditto).

>

> Some people doing this diet opt for a 7 day rotation to make

planning easier on a weekly basis. Anything between 5 and 12 is

considered acceptable to fulfill the advantages 1 and 2 above. I'd

like to expand the number of feed days to 7 but there are obvious

limitations with formulas - nearly all are milk based and contain

corn in some form be it corn oil, dextrin, sucrose, etc. Blenderizing

formulas enough to get through a pump has so far proved too much of a

challenge since at present is on continuous feeding. Still the

addition of apple, pear, pineapple or avocado to a blenderized meal

is a great way to break down the proteins to a smooth enough form to

get natural ingredients through the tube. I also use Imagine Foods

Rice Dream organic brown rice milk to help blenderize foods. I'm

still working on that one but am blessed to have so many options here

including miso bean paste, ground fish powder etc as good alternative

protein sources.

>

> As a footnote: is UPD7 positive. The UPD7 chromozone is

supposed to help regulate the gut and intestinal function. I have

found that breast milk helps greatly here. According to our Japanese

endocrinologist, apparently, breast milk - especially in the early

months - contains EGF factor? (not sure of the term) which is

incorporated on the UPD7 chromozone. This is key for digestion. Hence

anyone without this could have problems. Any new mums out there might

want to express and include this in their RSS child's diet. I added

300 or 400 mls per day at first, and now include 200 cc per day. It

has made a great difference to how efficiently

digests/metabolizes food.

>

> I'll keep everyone posted on how things go from there. Japanese

doctors are very detailed and competent in the field of research but

I wish I had more practical experience around me and more open minds.

A couple of years ago, I put on a macrobiotic diet for 18

months - his quality of life was great but I was criticised so

strongly that in the end I gave in. It is truly a heavy

responsibility to take the entire job of diets for our children into

your own hands. I have applied for an appointment with Dr H. as she

definitely does have the most concentrated RSS patient list in the

world, but I'm still awaiting a response.

>

> all the best to all - must get back to my day job - am translating

blurb on japnaese beauty products for the Russia market......strange

to be so grateful for a bit of " mundane " ...

>

> Debi

> mum to in Japan.

> 3 years 11 months, RSS, 10.5 kilos, 88 cms (still measured lying

down here until get to 90 cms!), GH, allergies...?, etc.

>

> Re: Zantac...has it made reflux worse?

>

>

> Hi Debi,

>

> I have been wondering about ! How is he doing? New

allergies

> or is he past the 3 months stage on his current diet? How is new

> baby?

>

> , mom to and Emerence

>

>

>

>

>