What I didn’t know was that her body couldn’t handle the protein. How was I supposed to know my daughter had a rare disorder and she couldn’t tolerate protein in large quantities? When I say large quantities, I’m talking about half of a hot dog. How could I have known?
|Jasmine eating Veggie Straws (very low protein)|
One of our first days after her diagnosis we had to learn how to count proteins. You think you know what proteins are right? Meat? NOPE!
There is some amount of protein in EVERYTHING. We had to learn that fruits have protein and vegetables have protein. It’s a small amount but when you have 6g of protein allowed for the whole day and an apple is 1g then you need to pay attention. A snack bag of Lays potato chips is 2g of protein. So a snack bag of chips is one whole meal allotment for her. Carbs have high protein, whole wheat (healthy right?), brown rice...too much protein!
As she grows she will be able to tolerate more protein. Her protein allowance is determined by her weight. There are some disorders that only allow 3-4g of protein intake for the rest of the patients life!!!
One thing the dietician suggested was to start journaling everything she ate or didn’t eat and keep track of the proteins and calories. For some reason I have found this to be very difficult. I cannot get her to eat most of the time and its depressing to write it down. It feels embarrassing for me to have to call the dietician constantly to tell him she’s still fighting to eat.
Most toddlers don't like vegetables to begin with but how in the world do you get your picky two year old, who doesn't eat because she associates it with puking, to eat vegetables? I guess I really need to learn to cook and be creative. If you ask my husband he would tell you cooking is definitely not my forte.
Another thing we are having trouble with right now is our family’s anxiety about feeding our child. Some of our relatives are anxious and don’t want to feed her anything at all because they are unsure. Others are all too eager to shove whatever she wants down her throat. “Peanut butter has too much protein!” Sometimes I feel like I’m constantly spying on everyone as they try to feed her things.
There are people on the Urea Cycle Disorders Worldwide Facebook Page that have reassured me that this will get easier and that she will learn how to manage her protein intake on her own. That day is not today so I will take a deep breath, pray and continue to fight because my daughter needs me.