Re: s clinic appointment and weight gain

[Guest guest]

Sorry to hear about the frustration. I totally understand. Been

there,done that. It sucks. My son is almost 3 (in 2 weeks) but he

was due June 8.

Why don't they want to use Viokase? We have used it for 2 years and

my son went from below the 0% to now in the 50% for weight. It just

goes straight into the tube. My son is orally aversive so he is

totally g-tube dependent and has been on Peptamen Jr (he is allergic

to milk and eggs). Our GI doc just switched us to regular Peptamen

which has more calories.

We also give our son a drip feed during his nap. We also add rice

cereal to the formula to add more calories and density.

mom to Ashton wcf

[Guest guest]

Crystal,

I don't understand the resistance to VioKase. Tell them that you will not wake

up in the night anymore to take his enzymes because it messes up his

sleeping habits. If you can't get the creon through the tube " INSIST " on some

VioKase. ( I was told never to put the creon through the tube because it can

clog the button up, but I know others are told to do it)

I give her enzymes (Creon 5) in the beginning of her feed and if she is

asleep halfway through, we give VioKase. If she is up, she gets more creon 5.

Her feeds only last about an hour and a half because I don't like overnight

feeds and this is what we are down to. I have heard that the viokase is not as

effective as creon but if it is only used at the halfway point, he is getting

the creon for the feed and you can adjust the viokase to work for you.

I hope this helps. you should not have to wake a sleeping kid to take enzymes!

s clinic appointment and weight gain

and I spent a few hours at the clinic on Monday. He has

gained on 1 kilo in a month. He only had one poopie a day and it was

determined he was only absorbing less than 60% of all he ate!! I was

so fustrated by all the oil and butter etc..I had given him over his

couple of years of life and no signs of malabsorbion was there except

no weight gain...Now, he had surgery (DEC)for the mic key button and

is tube feed ensure plus eight hours a night?? He does not have

greasy poopies always has one a day except when had cloitis or on

antibiotic. I was expecting much more from the feedings, instead I

feel fustrated and sad my little boy eats less and less everyday by

mouth. Do any of you have to wake your children up or give enzymes

in the middle of the night. They do not want him to take vikose (SP)

and said I could " try " to to put (creon through tube)...why have they

not suggested doing this before I mentioned it?? BARELY grows

a couple of things now and is healthy lungs wise...AND HE WILL NOT

EAT ICE CREAM!!I know the recipes and have tried most of them, we do

not force feed I learned early on from parents not to do that. He

drinks resource fruit drink 250 calories and barely nothing else??

Does anyone else have this type of malabsorbion probelms with no

symptoms except no weight gain. This all may difficult to read I am

trying to type before he gets home from his fathers this morning,

drink a little coffee...etc. will be 3 June 2 and weights

26.4lbs and is 83cm. You folks are awesome...thank you so dearly for

all of your support throughout the years.

Crystal

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

------------------------------------