Med schedules and issue's with Creon

[Guest guest]

Hey Y'All!

After a initial weight gain of 6 pounds in three months, Connor

seems to have hit a plateau in weight gain. He is sprouting up

though and his feet seem like they are growing overnight. I'm

hoping that he's converting calories in to upward mobility rather

than a spare tire.

His periactin dose was only 2.5 mls twice a day which was given to

us by Dr. H last July. Since he seems to build up a tolerance to

it, I have been just giving it to him once a day in the a.m. and

this worked fine. However, this recent plateau has me thinking we

need to get on the twice daily regime again in addition to the night

time catch up calories. His current weight is 25 pounds and he's at

33 inches tall. Sorry for my international friends. I'm not a good

metric conversion person (big sheepish grin).

Also, does anyone know what you can mix Creon (pancreatic enzyme)

with that doesn't dissolve the food before Connor can eat it? The

G.I. wants Connor to get two doses a day of this stuff but Connor

hates the taste of it and it dissolves on contact pudding, yougurt,

custard, eggs and mashed potatoes and gravey. If you think gravey

is slimey, you should see it with Creon. Double barf-o-rama! It's

no wonder Connor won't touch it! Help! Connor's body isn't

absorbing enough calories yet and we need to get this ball rolling

for his health and yes, my sanity.

Besides the constant eating and calorie issues, Connor and family

are doing great. We are living at the neighborhood swimming pool

and planning for our big trip to Oregon State where none of the

family have seen our latest addition.

Also, how do you pack the feeding pump if it's not the Kangaroo

variety? Will the airport x-rays damage it in my luggage? I plan

on taking it in my carry-on to avoid it being drop kicked off the

nearest 747 landing. Now that I'm mentioning pumps, I know I can't

bring the I.V. pole. What can you " utilize " in a hotel or house not

accustomed to g-tube fed children?

That's all the news for now. Connor loves the water and is learning

to paddle about on a kick board. This is good p.t. for his back and

my three son's really need to run off that excess energy that boys

seem to be born with.

Take Care All1

[Guest guest]

WAY TO GO CONNOR!! That is AWESOME news!!

Can you mix the Creon in his formula overnight?? That might solve the

barf-o-rama problem!!

We bought those stick up hangy hook things made by 3M for hotels to hang the

backpack. They are advertised at Christmas time to hang wreaths etc. They

are basically a bathrobe hook with that non damaging sticky tape like stuff

that doesn't ruin walls (really!). We keep one in our carry on luggage so

as never to forget it! We just stick it to the wall wherever!.

We also take our pump in our carry on to minimize airport damage and no the

Xray will not damage it.

Congrats on such great strides!

Dayna Carney

_____

From: RSS-Support [mailto:RSS-Support ] On

Behalf Of Kearns

Sent: Tuesday, June 21, 2005 6:54 PM

To: RSS-Support

Subject: Med schedules and issue's with Creon

Hey Y'All!

After a initial weight gain of 6 pounds in three months, Connor

seems to have hit a plateau in weight gain. He is sprouting up

though and his feet seem like they are growing overnight. I'm

hoping that he's converting calories in to upward mobility rather

than a spare tire.

His periactin dose was only 2.5 mls twice a day which was given to

us by Dr. H last July. Since he seems to build up a tolerance to

it, I have been just giving it to him once a day in the a.m. and

this worked fine. However, this recent plateau has me thinking we

need to get on the twice daily regime again in addition to the night

time catch up calories. His current weight is 25 pounds and he's at

33 inches tall. Sorry for my international friends. I'm not a good

metric conversion person (big sheepish grin).

Also, does anyone know what you can mix Creon (pancreatic enzyme)

with that doesn't dissolve the food before Connor can eat it? The

G.I. wants Connor to get two doses a day of this stuff but Connor

hates the taste of it and it dissolves on contact pudding, yougurt,

custard, eggs and mashed potatoes and gravey. If you think gravey

is slimey, you should see it with Creon. Double barf-o-rama! It's

no wonder Connor won't touch it! Help! Connor's body isn't

absorbing enough calories yet and we need to get this ball rolling

for his health and yes, my sanity.

Besides the constant eating and calorie issues, Connor and family

are doing great. We are living at the neighborhood swimming pool

and planning for our big trip to Oregon State where none of the

family have seen our latest addition.

Also, how do you pack the feeding pump if it's not the Kangaroo

variety? Will the airport x-rays damage it in my luggage? I plan

on taking it in my carry-on to avoid it being drop kicked off the

nearest 747 landing. Now that I'm mentioning pumps, I know I can't

bring the I.V. pole. What can you " utilize " in a hotel or house not

accustomed to g-tube fed children?

That's all the news for now. Connor loves the water and is learning

to paddle about on a kick board. This is good p.t. for his back and

my three son's really need to run off that excess energy that boys

seem to be born with.

Take Care All1

_____