G.I. advice thanks and update

[Guest guest]

Thanks to all of you who gave us advice on our G.I. Problem. We have removed

the G-J tube and are back to the G-tube. Danny is much happier now. We

discovered one thing that seems to be helping (knock wood): we switched from

30-calorie per ounce formula to 24-calorie per ounce. Danny supposedly needed

the more concentrated formula (Nutramigen) because he couldn't take too much

volume and needed the calories. I think that was true for awhile, but he is

doing well with the more dilute formula and the corresponding increase in the

rate of his continuous feeding (up from 40 cc/hr. to 47 cc/hr.) Has only

thrown up once or twice in 2 days, which is a big improvement.

We have discovered (I guess we knew pretty much all along) that the

gastroenterologists are just guessing like we are at what works. So before we

go to redo the fundoplication, we are going to try various combinations on our

own, including (1) different concentrations of formula and rates of feeding,

(2) different formulas, and (3) trying the drugs (proplusid, reglan, prliosec)

one by one to see if any of them really work.

Thanks again for all of your advice and for all of your support. I can't tell

you how much this mailing list means to me!

--Mike in Ventura, CA, father of 13-month old twins Danny (CHaRGE) and Nick