in Japan - GI blues.

[Guest guest]

is at last out of hospital after months. the good news is that he has

gained 300 grams.

Our experience shows just how VERY important a good GI doctor is - in some cases

in the early stages before growth hormone etc - as or more important than the

geneticist or endocrinologist. If you don't have a good one, then get one.....We

had to forfeit 3 years of experience at another hospital (since they won't

cooperate) and go to the UK and back to get an appointment with one of Japan's

two GIs but it was worth it. Getting doctors (particularly in different

hospitals and particular in Japan) to cooperate is something I haven't yet found

an answer to and it is very frustrating............so can well understand your

feeling Jody. GI doctor knows nothing about RSS and can advise on food

content but not feeding regimes etc....etc, etc.

We have now two new diagnoses over and above his RSS condition (UPD7 confirmed).

1) has serious allergies (nice to know after insisting on allergies but

being ignored) - but they take nearly 3 months to show through. (argh)

Instead of showing on the skin, we had to do an endoscopy to find his intestinal

wall and the villi there shrunk. Apparently this happens in only around 5% of

allergy cases and is severe. Since, we can't tell what the offending foods are,

the assumption is that he could be allergic to all milk protein, soy protein,

eggs, gluten, wheat, meat, fish etc. So we are on a diet of rice and vegetables

- the only seasoning allowed is salt. I am on the same diet as I am giving

breast milk. Have a craving for chocolate. eats a tiny amount by mouth but

it is a very recent development so I am delighted.

2) also has dumping syndrome.

Now we know that ' severe abdominal pain and extraordinary slow weight gain

was due to allergies (something that we parents had insisted on all along), we

also know that the nissen fundo and the pyroplasty that we did was a mistake. It

has instead created the problem of dumping. When we put food in, the

operation resulted in food staying in his stomach for only 10 seconds. It then

plonks into his intestines undigested, sends his blood sugars rising and then

plummeting down. I am getting used to bringing him back to our world when he

loses consciousness - often at night when I am not at most attentive. So over

and above his inability to cope with protein, now can't cope with sugars

either and we are having to slow his digestion down rather than speeding it up.

Treatment:

' main nutrition now comes from a highly hydrolized milk here called MA-1

but since paediatric medicine is so far behind here there are no formulas that

include maltidextrin so I was discharged with a 3 kilo bag from a local dairy

bakery and instructed to add 2g to the feed per day! I add breast milk and rice

dream rice milk to help stabilise his blood sugars (since the extra

immunoglobins either help protect the intestinal wall or are more complex sugars

and take longer to digest). is on 24 hour feeding - without which he tends

to lose consciousness.

Debi

mother to , aged 3 years 6 months, 9.0 kilos, 85cm, RSS, GH, dumping,

milk/soy protein allergies?