Thursday, December 16, 2010

Carnation FAIL. I Should've Known

Well, since adding the Carnation Instant Breakfast to Dean's milk, he has been CRANKY. I mean, uncharacteristically cranky and more preoccupied with food - obviously the second part is concerning. :/ We're far from the first PWS parents to notice this change in our child, so it's not all that surprising to me. Time to boot it out of his diet. I really didn't want the sugar in him and I don't think he is tolerating it well anyway. :( I just don't know how to get more calories into him with what we have to work with.

We've been giving him some fattier meats because those are packed with calories, and we've been upping his milk intake just a smidge even though he doesn't willingly drink it (he'll open his mouth, remember, just won't drink it himself). Maybe we'll try adding another oil to his milk? Suggestions? Please nothing involving straight sugar. This was not a fun experiment and I'm not willing to do it again! And yes, we do eggs, avocado, whole-fat yogurt, cheese, etc. Apparently this kid needs to eat a lot right now! Who'd have thunk it?

We're also adding creatine back into Dean's supplements. We'd stopped it for awhile and have started it again in the last week. Hoping that that adds some muscle to him and therefore, some weight.

In other news, Dean today pushed his little shopping cart toy (with the bottom weighted down with one of our thick volumes from seminary :)) all the way across the room! He fell once in the middle, got up and went the rest of the way. Hoping this is a trend as we are eager for him to be on his feet full-time!


Unknown said...

Hey Ali-
We used Flax Seed Oil for a short while- it has tons of calories. You can get it at the vitamin shops or homeopathic type stores. Good luck!
-Kim M

Katie said...

Ali, I agree with Kim about the flax=seed oil. It is great! I use it myself. Am praying for all of you. Grandma

Candice said...

I put olive oil in Graham's rice cereal because he doesn't get a lot of other fats in his diet. Maybe you could put it in his yogurt or something.

Matt said...

Hey Ali,
I can't remember if you've already tried this one... (Sorry, I can't find the post where you would've said something about it.) ...but coconut oil?

(Obviously I'm not speaking from parental experience -- just from culinary experience :)... It was just an oil that came to mind that might work w/ milk.)

Lots of love... and hope to have news for you guys soon!
- Matt

Sarah said...

i've been sauteeing Lillians vegetables in olive oil, and spreading cream cheese on her GF waffles in the morning. I've heard cooking meats in olive oil could help, and also adding quinoa (sp?)to the diet.

I know were in the same boat right now. Honestly, I'm not going to worry too much about it unless I notice her energy level dropping.

Ali Foley Shenk said...

Kim, I will look into that. Can you add it to pretty much anything?

Matt, yes, we tried coconut oil in Dean's milk, but since it comes in solid form, we had to liquefy it and then it started chunking up in his milk. Needless to say, Dean didn't like swallowing the chunks. Eww. lol But we're trying to put it in his other foods. As an aside, C'MON, BABY! WE NEED TO MEET YOU!

Sarah, I think that's the main route we're going to take. I wouldn't be so worried if Dean weren't actively *losing* weight. He really needs a bump in GH, but Dr. Miller (understandably) won't do it until he's gaining consistently. Whoever thought we'd be having this problem with a kid with PWS?!

horace said...

Hey Ali. We use heavy cream in Olivia's milk (sounds insane, but it has been great in terms of weight gain). We also give her sunflower seed butter (a tsp has an insane amount of calories and it is pretty nutritious unlike heavy cream). I am not sure if you use nut butters, but apparently sunflower seed butter is low in potential allergens. We also use canola oil. Olivia did not like olive oil because of the taste.

Ali Foley Shenk said...

Carolyn, we definitely use sunbutter because Cole is allergic to peanuts. I had tried it with Dean and then stopped one time when he gagged and got really mad about it! But gave him a sandwich of sorts with it yesterday and he liked it. So maybe we're onto something. :)