Friday, August 24, 2012

Mighty Milk

Since Nolan didn't like the Pediasure, the dietitian suggested adding 1/3 cup powdered milk to a cup of chocolate milk. They call this "mighty milk" and it has double the calories of a regular glass of milk. We went out and bought some carnation powdered milk and added it to a cup of chocolate milk - Nolan liked the taste, so that was a big win.

Yesterday, he ate breakfast (one and a half waffles) and then I gave him his morning "mighty milk" snack at about 10:30am. He would drink a little and then be done for a while, then drink a little more. I spent most of the day chasing him with a sippy cup, trying to get him to drink the entire volume. It took until 4:00pm, and he didn't eat his lunch or much of dinner because of it. We still had one more cup to get into him, so we sat over him and didn't let him move until he had downed the entire cup of milk.

He drank this one over the course of an hour, and didn't feel well. His stomach bloated and he was "too full."

He then had severe diarrhea and, while still bloated, seemed to feel a bit better.

For comparison purposes, his stomach is typically flat and not tight-as-a-drum and bloated:

I have emailed the surgeon and I am waiting for some direction - I can't make the kid sick like this, but obviously he needs more calories.

I really wish they'd look into the "why" of the bloating, because maybe we could treat that and have a boy who is able to eat normally without all of this craziness!


Kyla said...

If I was the dietician, the first thing I would suggest is giving him 2 ounces of Pediasure per g-button every 2 hours through the day (some added volume, but hopefully not enough to preclude eating when broken up) and then do 8 ounces of Pediasure in the g-button at night (until you have the pump, you can just put in a little at a time like during the day)...but I'm not the dietician! LOL. I've heard from lots of parents that they just aren't helpful. We had a nutritionist through ECI when K was little who was great, but I think that is the exception when dealing with "complex" kids.

Rachel said...

Poor little Nolan. I know how he feels sorta, my mum had to force feed me extra calories when I was a teen because I was underweight and I hated it. I really hope the surgeon comes back to you with an answer. Big cuddles to your brave boy xoxo

Herding Grasshoppers said...

Oh bummer about the bloating.

We gave Wyatt "mighty milk" when he was little because he was so skinny (hyperactive, not a "medical" cause) but I never knew if the "mighty milk" was actually helping or just making him feel full and then not want to eat more. ugh.

We did other "food layering" though - like putting butter on both sides of a pbj, before the pb and j. Or extra powdered milk in liquids like soup.

Hope you find something that works better and doesn't bloat him up!


spherescamp said...

There's got to be something more concentrated that will give Nolan the calories he needs without making him so full! Poor little guy.

Jenna said...

Thanks for commenting on my blog. It was nice to be able to read through a blog that had a fundo surgery / recovery. I know that k'tar uses oxygen at night not a cpap and is still able to get feeds, I have also heard that some kids use oxygen instead of a cpap because kids will sometimes tolerate it easier. Maybe that is an avenue you can explore.
Also, did he try the vanilla pediasure? That is the only one Matt would eat. Also if he doesn't like the vanilla you can add a little bit of vanilla and sugar to help it along. My husband loves the taste though. (The regular pediasure, Matt is now on pediasure peptide and kevin says that one isn't very good. Matt didn't mind it before we had to thicken it)

Julia said...

Is he normally okay with milk? Any chance he's developing lactose intolerance?