when do things get better?

April 4, 2005

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

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