Re: Pat & Jodi tolerating volume of feedings

[Guest guest]

> Hi Pat & Jodi,

has always had the same problem tolerating increased volume of

fluids (both formula & water). I had trouble understanding this when

he was young too, but I think it was due to the following reasons:

1) He had extremely delayed gastric emptying. If your stomach is full

already, you know what it feels like to keep putting more in there!

Have & ever had a gastric emptying scan? Unfortunately,

there's not too many meds out there to help with motility. Reglan is

one of them, and this never worked for any of my kids (all 3 had reflux

& delayed emptying). Propulsid, which is no longer available, was

another drug of choice for this. was on this too.

2) The osmolality definitely has something to do with it, because the

more rich the formula & the more laden with calories, the fuller the

child will feel. I was extremely worried how we would continue to

increase the calories was getting over the years when he

couldn't tolerate what he was getting as it was. When was 3.5

years old, we switched him to a formula called Nutren 1.5, so we could

give him more calories without increasing the volume. At the time, he

was on Pediasure (960 cc/day). Don't you love that I keep all these

records?!!! For 2 months, I started adding the Nutren 1.5 slowly, so

he was getting both Pediasure & Nutren 1.5. I actually decreased the

volume he was taking in at that point from 960 cc to 900 cc, but went

from 960 calories to 1050 calories/day. This meant, he was getting

less water daily too, so the doctor was worried about the effect it

would have on his kidneys. He did ok, but it didn't help his

constipation problem. By the 3rd month, we switched completely

to Nutren 1.5, and he was getting even less volume (800 cc), but more

calories per day (1200 calories). is still on this formula at

age 11, & he now gets 1250 cc/day (1875 calories/day).

3) also had a fundoplication when his g-tube was inserted. For

years I didn't know this, but the fundoplication itself caused severe

gagging and retching. Obviously, I knew had horrible problems

with gagging & retching (which lasted until he was at least 6 or 7

years old), but I didn't know it was due to the fundoplication, and

's doctors didn't shed any light on why he was gagging so bad

either. The problem was alleviated when all of a sudden could

burp. I thought this meant the fundoplication loosened or came undone,

but he just had an upper GI, pH probe, endoscopy which showed the fundo

was intact. Unfortunately, it also showed that he has a large hiatal

hernia, which I attribute to all those years of intense gagging. They

don't plan to do anything about this hernia though, since he is not

having reflux now.

Kim C.

> We just recently tried upping 's daytime rate by 1cc/hr (from

> 35cc to 36cc/hr) and he started

> vomiting at least once a day! It seems like we always have this

> problem! I'm

>

> starts to gag and spit up too when we up him on the pump by

> only 1 cc. Unlike , usually can't even tolerate added

> water to his

> day. He just can't take that much at one time.

>