Re: Re: in Japan - GI blues.

[Guest guest]

thank you for everyone's sympathy. We know we have a long way to go and we are

just hoping that doesn't fall into one of his severe pain spells. We have

another few weeks to go before we are over the usual 2.5 month period on a new

food.

As for the GI surgery, while you can reverse a nissen fundoplication (you unloop

the bit of the stomach that was looped around the esophagus), you cannot reverse

a pyroplasty I am told. What happens there is you basically make a cut in the

muscle that opens and closes at the bottom of the stomach (between the stomach

and the duodenum) and then you pull the two sides of the cut open and sew them

to the side of the exit opening. Imagine opening a bag of crisps and then

creasing the middle of the open sides to keep the bag open. Unfortunately, once

you cut a muscle, there ain't no way of putting it back together. The hole may

shrink a little if we are lucky as he gets older.

We will have to live with this decision, and the consequences for the rest

of his life. He already has traces of past ulcers resulting from bile from the

duodemum rising into the stomach where it shouldn't be. The doctors I spoke to

at Great Ormond Street and Birmingham University in the UK (both strong gastro

centers) say they have learnt past lessons and now never do pyroplasties and

rarely do nissens these days on children with feeding problems. Their problems

of reflux, poor growth or gut motility are usually a by-product of something

else such as complicated or obscure enzyme imbalances or allergies and

post-surgery discomfort or nausea can cut the chances of ever feeding by mouth

quite considerably. I'm not sure if other doctors or parets would agree wtih

this but there is no doubt surgery is a drastic option.

I feel terrible each time I think of it so I try not to. I just hope that we

made this error in place of making a much larger one later on. We did loads of

research and did get second and third opinions at the time but not from the

right people and even in 3 short years so much more experience has been gained

to change doctor's opnions. (Dr H by the way, did introduce some warning signals

by email at the time - dear love her). We have been much more cautious ever

since and refused drastic options such as a six month artery feeding for

example.

The big lesson we have learnt is - don't be pushed into something by someone

saying - he will feel alot better and his problems will disappear. Don't do

anything irreversable until you, the mum and dad, are near 100% comfortable with

it - the pros and cons.

Anyway, enough looking back - facing forwards from now on.

thank you again for your thoughts, suggestions and support.

Debi,

mum to in Japan, 3.5 years 9.0 kilos, 85 cm, GH, RSS, dumping, milk/soy

protein intolerance.

Re: in Japan - GI blues.

Hi,

Congrats on him leaving the hospital! I felt so badly for you during

the last post. I have a really really stupid question...Emerence

has not needed any stomach surgeries...can the pyloroplasty be

revered??? Would that help the dumping? I so hope continues

to grow!

, mom to , 5 and Emerence 2 Rss/SGA 27 mo 31 " 21 lb.

> 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?

>

>

>