I kept a food diary for Nolan last week, as directed. We're doing it again this week to see what his total caloric intake is over time. I emailed it off to his surgeon late last night, so we'll see what he says: either Nolan is eating enough and his body is burning through it too fast, or he isn't consuming enough. It is hard for me to tell - he eats small amounts all day long, and rarely eats any "meal" - I wonder if his delayed emptying is still there (though that often disappears with the fundoplication, so who knows).
We had him weighed at the pediatrician on Friday and he weighed in at 33.8 pounds on their scale. This is a significant difference from the surgeon's scale - the 31 pounds on his scale places Nolan at a very low weight for his age. 33.8 pounds is at the 5% mark, though - much better than 31 pounds. I emailed this information to the surgeon as well, so we'll see what he thinks.
This is what he has eaten for the past week:
07/17/12
- 1 ¾ waffles with butter and syrup
- Cup apple juice
- 2 bites macaroni and cheese
- 2 packets cheese and crackers
- Cup pineapple juice
- ¼ cup Wheat Thins crackers
- Water
- 1 bite pizza (“too full”)
- Half bread stick
- Popsicle
07/18/12
- ½ blueberry bagel
- 1 cup orange juice
- Nectarine
- 2 bites jelly sandwich
- Popsicle
- ½ cup Cinnamon Toast Crunch Cereal with milk.
- Few bites Italian Ice (Luigi’s)
- Popsicle
- ¾ Bowl instant oatmeal (dinosaur egg oatmeal)
- Piece of bread with ketchup and mustard on it.
- Water
07/19/12
- ½ cup dry cinnamon toast cereal
- ½ peach
- 2 bites macaroni and cheese
- Juice box (grape juice)
- Water
- ½ cup cornflakes with milk (and 1 teaspoon sugar).
- ½ cup spaghetti with meat sauce
- Few bites of a baguette slice
- 1/3 cup green beans
- Popsicle
- Whole sandwich (cheese slice, ketchup, mustard)
- 1 string cheese
7/20/12
- 1 cup dry cinnamon toast crunch cereal
- Few bites jelly sandwich
- ½ carrot with ranch dressing as dip
- ½ Freddo Frog chocolate (small chocolate treat from Australia)
- Slice of Kraft cheese
- Go-gurt
- Slice of baguette
- ½ cheese quesadilla
- Tortilla chips (5 or 6)
- ½ tub of yogurt
07/21/12
- 6 “timbits” (donut holes)
- 2 bites macaroni and cheese
- Juice box (grape juice)
- Few bites cheesy “twisties” (like Cheetos)
- 1/8 cup ice cream (estimated – he licked some off the top of a cone)
- 2 pieces of bread with mustard and ketchup
07/22/12
- ½ cup Cinnamon Toast Crunch cereal (dry).
- ¾ grilled cheese sandwich
- 1 small carrot with ranch dressing
- ½ cup orange punch
- Small carrot with ranch dressing
- 2 bites of corn
- Popsicle
- Gogurt
15 comments:
I don't mean this in a rude way, but my boys both eat about that much in ONE meal. I imagine they will tell you to add some calories. Milkshakes, anyone??
Blurgh. I was kind of hoping most 4-5 year olds eat that much. Duocal or milkshakes, probably - I'm anxious to talk to the dietician.
Sorry, my friend. Nolan's entire day looks like one meal for my boys....
You'll be fine Leah.just be patient and see what the experts say.a big hug to you!
Some kids eat lots, some don't. Some days mine eat Nolan's week in one day, other days Nolan has them beat. I try to let them decide how much to eat to let them learn to listen to their bodies as well as helping them learn to make good choices.
In our case, it won't matter how much Lauren eats (or doesn't) she still isn't going to grow any more or faster. One of our other NS moms said her little guy needs more calories than the average child just to maintain his current weight. They know because he is still tube fed and can literally count his calories (he's 4 y/o).
Hence my question about GHT. Looks like a lot of what Nolan eats is low calorie too - lots of grains and carbs. When Lauren first started falling off the curve, they had the same arguments "check that it's not due to insufficient calorie intake..." and had me add butter to everything - even pureed veggies (perfect for dairy intolerance don't you think??). Perhaps there are ways you can slip more calories in without increasing the quantity he has to intake?
Hang in there honey. You and Nolan will get through it. The two of you will find your balance.
FYI: one of our best supports ever (who helped determine Lauren's intolerances) was our dietitian. Does your medical coverage include one?
I send you hugs and cups of coffee (laced with the alcoholic beverage of your choice of course...)
I wonder about GHT... even though his height is still on the charts, he has been dropping percentiles. His surgeon is sending everything to a nutritionist, so I am hopeful that we can meet with them and come up with a plan. Our insurance will cover feeding clinic, which has a dietitian involved. I'm rather anxious to get it all sorted out - he's happy and healthy enough, just not growing!
Our daughter was FTT. Our nutritionist made a few changes that helped us. I am not sure if they make sense for Nolan. First, we gave up juice and only gave water. Juice doesn't have many nutrients and for a kid that doesn't eat much, it fills their belly fast and doesn't give many calories. The next change was we put her on a strict eating schedule. Our daughter never expressed hunger. She would take a bite here and a bite there. In doing that she never felt hungry and never learned how to eat larger meals. We did breakfast, snack, lunch, snack and dinner. No bites were allowed inbetween. If she didn't eat breakfast, she waited until snack. We limited meal time to 30 minutes too. Overtime, she got on a schedule and felt hungry at those times. Her belly got used to eating more at a sitting. We also put her on Erythromician to help with gastric emptying. Over the next few years she became a normal eater like her peers. Good luck!
He's not eating nearly enough, and the stuff he is eating is just not nutritious enough!! Will he eat nuts and nut butter? How about high fat milk items? Avocado is very good for you and high fat/high calorie.
And just so much sugar!!! He is going to burn the sugar quickly and then feel like crap. Is he tired all the time? Need to lie down and rest? He could be experience huge variations in blood sugar that lead to him feeling sick all the time, which would make him tired and not feel like eating.
And you need to trade everything that he will eat for healthier versions of them. If he will eat a go-gurt, switch it to sugar free greek yogurt. If he will eat a quesadilla, switch to whole wheat, fortified tortilla (Mission makes one that has 25 fiber and 9 protein called Carb Balance Plus) and whole fat cheese. They taste exactly the same but are far better for you. He eats cereal well, so switch to something with low sugar (plain Cheerios, Rice Krispies, Chex, Kix or King Vitamin). Will he eat protein bars? There are very low sugar options in Atkins brand that taste and look like candy but have high protein.
He needs better food in addition to more food! Aim for food that has only one ingredient...real food.
The only food he's getting into his belly is "junk" food, Melissa, but that is the only thing he'll eat. At the moment, we just need calories - not sure what else to do. He doesn't eat real food, has difficulty chewing and swallowing, so if he'll eat it, he can have it. He only eats a handful of things at a time - we cook real dinners and he doesn't eat any of it - and won't eat again until the morning (where he'll only eat a portion of his breakfast). His stomach doesn't work right and he can't process fats and refuses most protein sources. He can't swallow meat well, so that's out. He usually hates peanut butter. He has to eat carbs because they're one of the only things he digests well.
Stacey, I think that is what we'll do with Nolan. We're waiting to talk to the dietitian to see what they recommend. He's probably also going to have to go in for a few more studies to find out if it is DGE or other problems causing the lack of appetite.
While Miss Kat doesn't have digestive issues, I can understand what you are going through. She has severe food issues that have caused us to have to do feeding therapy, she had a feeding tube and we have even been to the point of discussing an in-patient placement in the hospital to treat her feeding issues. I completely understand what it is like to have a child who won't or can't eat, and that you just want to give them whatever food they WILL eat, so that they don't die! (But then it just makes the eating worse and their body gets sicker. It is a horrible cycle to be in!)
It is really awful. We had a good year to year-and-a-half of normal eating. And now we're back to this. They had discussed doing another surgery to open up the bottom of his stomach along with the fundoplication, but didn't do it in the hopes that the fundoplication would help his gastric emptying issues on its own. The fundoplication also reduces stomach size, so on top of his regular issues, he now has a smaller stomach - he can't eat "3 large meals per day" due to the size of his tummy - fundo kiddos have to eat lots of smaller meals anyway. It's sort of like a baby gastric bypass in a way. His eating has gone back to the way it was before he was diagnosed with the reflux/DGE issues so I am concerned that the fundoplication isn't working or that his emptying is even more problematic. If we do tube feeds at night, it might actually make it easier to get healthy food into him, because the calorie part of it will be taken care of at night, and we can focus on extra nutrition during the day (even if he only eats a few bites). It is a vicious cycle.
I had another thought along the GH lines - kids eat like mad when they're growing. The doctor's have said they want to make sure Nolan's slow growth isn't because of low calorie intake but what if the low calorie intake is driven by slow growth? Roman eats like a bird when he's in a slow growth phase... The rest of your statements though - small stomach, gastric emptying issues etc are all very sound though. Stick with it! I know you'll figure it out!
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