Re: delayed stomach emptying/fundoplicaiton/pyloropasty??

[Guest guest]

hi,

this is debi, mum to in Japan again. We struggled into the hospital

and spent all day monday there insisting that we saw a stomach specialist

and got to the bottom of 's discomfort/pain during feeding. He is

still on a 4 hour feeding schedule of high calorie formula and 2 hours drip

then two hours off. He cries/writhes around for 3 out of the 4 hours and

sleeps the last. We have had to stop the overnight pump feeds for a while

since tries so hard to pull out the ED tube from his nose that we

just daren't feed continuously overnight. We had to have 4 tubes put in

last week, each one with x-ray and surgeon causing

fever/dehydration/stress. is now in a type of straight jacket

armband contraption to stop him pulling at his face...

We did an upper GI test, four months after the first one, this time I

insisted with formula not barium only. He came up with really bad reflux

(although maybe not surprising since they syringed a whole lot into his

stomach which had been bypassed for several months so probably in shock!).

We also did a stomach emptying test again with formula putting 100 cc in

with a syringe, sicked up about 40 of it and the rest took 2.2 hours

to pass through. The doctors said that 2.2 hours for 60 cc to empty out of

the stomach was pretty much OK and well within a normal childs range. It

seemed a bit slow to me. Would it take the same time for a larger original

amount to pass through or would you have to double that for say 120 cc?

What does anyone here think, does anyone know the average, minimum emptying

rate for an RSS child?

The hospital is beginning to suggest a stomach operation to shift NG(ED)

tube to a G-tube, and do fundoplication along with it. I am bit concerned

about this since remember at convention GI doctor wasn't keen since they

often blew off and also Dr H insisting that in most cases the two should be

done in conjunction with a cut into the stomach exit too. Could anyone who

has had this operation done on their child tell me a bit about their

experience, whether they had a choice of how many parts of the operation

to do, how easy/hard it was to switch from ng to g-tube, whether the

surgeon who did the operation had any idea about RSS kids in general?

I'd be really grateful since I have a whole list of questions which I hand

to the doctors here in Tokyo each time I go and each time I get woolly

answers even to how many RSS kids they have there. A variety of incidents

and comments have left me unsure of just whether I can trust them to know

what they are doing. Accountability is not at the top of the list here.

Note for Jodi - yes I'm writing an email to Dr H also asking for her advice

on this as you insisted. Doctors here are not keen to take advice from

others so not sure how I'll progress but is getting ever more

difficult to feed as he refuses anything by mouth and is in such pain with

his current tube.

Once again, thank you for everyone's support....am at that crying help

stage and have had just about my fill of medical culture from this part of

the world right now.

debi, mum to in Japan 10 months, RSS 63 cms, 5.4 kilos and falling

[Guest guest]

Debi,

Good for you for taking charge of ' care and demanding that

tests be done. You are on the right track. I'm also glad that you

emailed Dr. H. I hope she replies to you. You may have to email her

a couple of times. She seems to be skipping over her emails lately

and not really answering them. Put in the subject heading that you

are the Debi from Japan. Maybe that will make her open yours.

As for the surgeries, yes, you can choose which one(s) to have.

While Max had severe reflux, and still does from time to time,

fundos were not done that often when he was a baby, so we just opted

for the g-tube placement. We continued with oral reflux meds and he

did just fine. I know that Dr. H. is in favor of doing all three

things at once, but I worry that she is using a cookie-cutter

approach for all RSS kids now. Just because you do one, does not

mean you have to do all three.

The g-tube would be a great relief for you, Debi. would not

pull it out and no one would know he has it. He would be more

comfortable and you would be surprised at how easy it is to take

care of.

Please let us know what Dr. H. says. We are all here for you.

Jodi