Re: when do things get better?

[Guest guest]

HI Debi,

Please give a big hug for me. Also, please hold him as much as

you can. Some recent studies have shown great improvements in health

of sick kids who are held/touched often by their parents. But you

probably already knew this.

My instinct says that getting home as soon as possible will

probably do him a world of good. I hope this is right.

You might want to get in touch with Irene W.

(walborsky@...) and/or Stacie L.

(stacieandtim@...). Each of these people have children who had

major food aversion and would not eat anything for a long time. The

children are eating now. They may be able to give you some

advice/help ia e-mail. I think Irene is/was very acive in a feeding

tube group. They have not posted to this group in a long time, so I

don't know if these e-mail addresses are current.

Given your positive efforts and ' willingness to try hard, I

think things will get better, but I think it will be slow. Again I am

guessing/hoping for the best.

I wish I could do more to help. Please keep us informed and feel free

to ask anything. Hopefully someone may have some useful advice.

I hope this helps.

Ken M

> I know so many people have tough problems on this site and there

are many mothers in the hospital with really sick children but I'm

really struggling to hang onto even an ounce of optimism. has

been in and out of hospital his whole 3 years of life. We've changed

doctors/hospitals in Tokyo this time to a

gastroenterologist/nutrition speciality (although they still have

only limited experience) and he's been in hospital 4 weeks now and

more and more problems are emerging with fewer and fewer answers.

>

> basically cannot cope with proteins and now sugar. The

protein problem is thought to be some kind of intolerance although

nothing clear has shown up yet. We have agreed to abandon his rice

diet for now and we are on a new elemental formula with broken down

proteins (and hence higher sugar content). This has however

highlighted another problem - serious insulin dumping.

>

> had a pyroplasty, nissen and G-tube placement 2 years ago but

it appears that was a big mistake. The operation was originally done

for what was considered to be a serious reflux problem although we

parents insisted it was a food reaction. We had an endoscopy done

last week and it turns out that his pylorus is now gaping wide open

and things move out from his stomach so quickly (10 seconds) into the

intestine. A glucose tolerance test sent his blood sugars plummeting

below 30. Hence, over and above his still tricky protein problem, it

appears that we have now created an insulin dumping syndrome -

so bad that his blood sugars also tank to 40 when he is put on an IV

drip.

>

> Having been told that eating by mouth would be a possible answer, I

have scaled up my efforts to get to restart using his mouth

after 3 years of refusal. I think somewhere in his little mind he has

equated eating with being able to go home (and I have to admit I

haven't discouraged the association). Finally he has started to eat

just a little - and what should be a triumph is also proving a

failure since half way through eating something his blood sugars tank

again to below 40 and the poor little chap instantly curls up on his

chair and says he has to lie down.

>

> We just can't seem to do anything right. Our six month old daughter

(who previously totally breastfed has probably forgotten what I look

like) is now bigger than her 3.5 year old brother. is still

very protective of her though, is pleased to see her when she comes

to visit, never complains when I have to leave him to go home to her

at night now. He just looks at me through the bars of the hospital

bed and says " I'll try harder " in a mixture of Japanese and English.

It's all I can do to leave without tears showing in my eyes.

>

> I sure feel sleep-deprived, unsure what to make of so many

conflicting variables, and isolated. But I'm trying to be positive

and new doctors, while inexperienced are open to suggestions.

>

> When things get better, I'll be sure to post some of the oriental-

based remedies that I have found help for reflux,

constipation/diaorhea, intestinal discomfort.

>

> apologies for the long vent.

>

> Debi, mother to in Japan(3.5 years, RSS, 8 kilos, 83 cm) and

Sora (6 months, non rss, 8 kilos, 65 cm)

>

>

>

>

>

>

>

[Guest guest]

my paryers go out to you i really know not enought to help but i wanted to let

you know i was thinking of you all

cara mom to jacob

Collis/Tanuma wrote:

I know so many people have tough problems on this site and there are many

mothers in the hospital with really sick children but I'm really struggling to

hang onto even an ounce of optimism. has been in and out of hospital his

whole 3 years of life. We've changed doctors/hospitals in Tokyo this time to a

gastroenterologist/nutrition speciality (although they still have only limited

experience) and he's been in hospital 4 weeks now and more and more problems are

emerging with fewer and fewer answers.

basically cannot cope with proteins and now sugar. The protein problem is

thought to be some kind of intolerance although nothing clear has shown up yet.

We have agreed to abandon his rice diet for now and we are on a new elemental

formula with broken down proteins (and hence higher sugar content). This has

however highlighted another problem - serious insulin dumping.

had a pyroplasty, nissen and G-tube placement 2 years ago but it appears

that was a big mistake. The operation was originally done for what was

considered to be a serious reflux problem although we parents insisted it was a

food reaction. We had an endoscopy done last week and it turns out that his

pylorus is now gaping wide open and things move out from his stomach so quickly

(10 seconds) into the intestine. A glucose tolerance test sent his blood sugars

plummeting below 30. Hence, over and above his still tricky protein problem, it

appears that we have now created an insulin dumping syndrome - so bad that

his blood sugars also tank to 40 when he is put on an IV drip.

Having been told that eating by mouth would be a possible answer, I have scaled

up my efforts to get to restart using his mouth after 3 years of refusal.

I think somewhere in his little mind he has equated eating with being able to go

home (and I have to admit I haven't discouraged the association). Finally he has

started to eat just a little - and what should be a triumph is also proving a

failure since half way through eating something his blood sugars tank again to

below 40 and the poor little chap instantly curls up on his chair and says he

has to lie down.

We just can't seem to do anything right. Our six month old daughter (who

previously totally breastfed has probably forgotten what I look like) is now

bigger than her 3.5 year old brother. is still very protective of her

though, is pleased to see her when she comes to visit, never complains when I

have to leave him to go home to her at night now. He just looks at me through

the bars of the hospital bed and says " I'll try harder " in a mixture of Japanese

and English. It's all I can do to leave without tears showing in my eyes.

I sure feel sleep-deprived, unsure what to make of so many conflicting

variables, and isolated. But I'm trying to be positive and new doctors,

while inexperienced are open to suggestions.

When things get better, I'll be sure to post some of the oriental-based remedies

that I have found help for reflux, constipation/diaorhea, intestinal

discomfort.

apologies for the long vent.

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

months, non rss, 8 kilos, 65 cm)