Saturday, July 30, 2011

"But I'm Hoooongry"

As, I've mentioned before, Elise will eat anything that is not nailed down. But we are having new problems. Not only will Elise rake food out of the pantry and fridge, but now she does so constantly and whines about it even more. She's always "hoongry".

We discovered that there was a broad definition of hungry when we were on vacation. She was "hoongry for the beach", there and so we learned that it also can mean, "I want".

The situation has become somewhat more...More. *sigh*

Now she is never satiated. Ever. She is always hungry. She is never full. Or, rather, I should say she is never aware that she is full. It is beyond frustrating.

She is pudging a bit, and it scares me. Many people with Downs tend to struggle with weight loss. As we all do, of course, but as their bodies are often not as coordinated, their exercise options can also be affected. Elise cannot swim or bike or, well, you get it. Developmental delays can affect their options as well. Many of them also have an inability to sweat, or are on medication, or have other medical conditions as well...

I am trying desperately to figure out her situation. Is she eating too refined food? Not enough protein? Does her inability to feel pain appropriately and general sensory issues affecting her ability to feel full? Is she eating emotionally? Struggling with frustration/depression? Is her ADHD medication affecting her appetite?

I am trying different combinations of food. I have quit buying crackers. We are trying to get out and get her moving, too. I may start brushing her again.

I even emailed my guest blogger from back in November whose son has Prader Willi Syndrome hoping for some tips. Unfortunately, the advice was more "lock everything up" than "here is how to magically fix it"...which I admit I was hoping for. She did offer a suggestion, though that has been helping a little. A snack schedule. Even though it doesn't change the situation, there is a measure of security for them, and you can tell them, "Sorry it's not 10, yet" or whatever...Elise likes knowing that she can eat when the alarm on my phone goes off. Interestingly, sometimes she will go off playing and actually forget, thanks to the security that she will get a snack, soon. So, at least that is helping!! Thanks, Lisa!!

This is the first time my Down Syndrome Patchwork books have failed me. (Neither Nutrition NOR Medical) I have to say it was terribly disappointing.

SO, anyway, Tiffany's Science Theater is back at it. I am hoping to have a solution, but at least I've discovered that I am not alone. There is a THREAD discussing this very problem on one of my favorite discussion boards, BabyCenter's Down Syndrome Board. And you lovelies encouraged me on Our Facebook Page. Thank you for that!! As I figure out solutions, I will certainly be posting to share the you some of the crazies!!


  1. Love this post! I imagine that I will be coming to you in a few years. . . right now we are in the "needing to gain weight" phase (thank you reflux!)

    I do wonder if maybe Elise is having a growth spurt? Also, the ADHD meds for sure on the appetite. Great question about sensory. If she is oral craving and food satisfies it. . . It is funny that your friend who has a child with Prader Willi says to lock everything up and use a snack schedule--I was going to say the same thing. Can she have fruits and veggies? These are good snack options with low calories. Also high in fiber. It is like weight watches, I guess, where certain fruits and veggies have 0 points.

  2. Alex was on meds for a time that made him ravenous. I basically stopped buying 'crap' We had tons of fruits and veggies for him to snack on in between balanced meals - - I didnt have a schedule. If he wanted a snack, he could have some carrots or grapes. Out went the candy and chips and high calorie protein bars, etc. Drinks were reduced to water and juice on special occasions.

    Now Alex is 16 and is ravenous for a whole other reason, but I really use the same format now. I don't stock up on food weekly or bi-weekly, but shop daily - - this is a huge lifestyle change, but honestly, its helped us both with impulse eating :-)

    Good luck!