The “eating” pendulum has once-again swung in the “no way, Jose!” direction for Mr. Corrigan. I have absolutely no idea what switched it to the “off” position this time and that frustrates me. He was very sick, with the highest ammonia level he had since birth, in December 2013- and the onset of that crisis did involve massive amounts of vomiting-so I have to assume that the December event triggered his eating issues once again, even though he did initially eat pretty well after he was discharged from the hospital. It wasn’t until more than a week after he was recovered that he began refusing food once more which really surprised me. Once he was stabilized, but still in the hospital, we literally emptied the hospital kitchen of Froot Loops and diced peaches. Everyone was so excited to see him eating so well in the hospital and we were so encouraged that we even asked his dietitian increase his protein allowance for foods by mouth (thus removing protein grams from his formula- same amount of total protein-just wiggling around how he took it) a few grams so that he could continue his eating streak at home without me having to police his enthusiasm. That didn’t last long and we are now nearly two months out from that hospitalization and the last six weeks have had very little oral eating.
I’d hoped that after his January “re-set” (hospitalization to fine tune his feeding schedule) things would improve. Changes made during that stay decreased the number of daily feeds but increased the volume of each feed. This change helped to stabilize some of his numbers better throughout the course of the day, but I had hoped it might help to encourage hunger-cues since he is now at only four feeds per day and there are now five hours between each feed. Plenty of time in there to allow the stomach to fully empty and allow the feeling of hunger to emerge. Only it hasn’t worked that way at all. In fact, the new timing means that he is getting an hour feed in the school lunch hour, thus filling his tummy during the time his classmates are eating and the time is ripe for peer example and causing him to refuse all of his food from home. The same thing occurs as his dinner feed finishes at 5pm, right as our family sits down for dinner. I have taken a little liberty and tried to move his two evening feeds a bit to accommodate our dinner time but even when I do so, he is still not eating anything even though his prior feed ended at noon!
He is back to paying very close attention to food, acting interested and sniffing everything before he takes even the tiniest lick. I wish I better understood his thought processes about food. He is obviously curious, he doesn’t miss a beat when we walk by with a snack or a cup, he acts as if he would be more than happy to have a little of what I’m having, but then I weigh it out and put it in front of him and its nothing but crickets.
No one has ever really explained to me, in detail, the mechanisms behind the eating issues that plague some kids with Urea Cycle Disorders. Something about excess serotonin from the disorder causing a lack of signal from the brain to cue hunger pains. Something like that. One of those “nothing we can do about it” issues, like crazy-high citrulline levels and overwhelming above-average cuteness of the affected, I suppose.
I’ve read time and time again that transplanted Urea Cycle kids often emerge with great appetites and their food aversions disappear, so I suppose this is what we live with as long as we choose to live with the liver he was born with. His growth chart looks perfect, in fact he is taller than I expected he would be considering his dietary restrictions, and his BMI is spot-on, so he is thriving. Which is awesome and is why I send Valentines to his g-tube but secretly kind of resent it all at the same time, you know? Without it, my little guy doesn’t stand a chance against what would take place inside his body, and ultimately damage his brain, so I should just shut my pie-hole.
It was just so beautiful to see him shoveling spaghetti into his face for awhile there.
Updated to add: Forgot to share this photo!
I love getting update IEP reports on Corrigan-as long as progress is being made, I am happy and boy- oh boy- he is progressing! Also, I have a teenager that doesn’t want me doing the “MY KID IS SO SMART, OMG GENIUS!!!” thing on Facebook over his grades but this is my blog and I will brag if I want to. The oldest C brought home straight A’s. Again. Something like his 33rd marking period with nothing but capital A’s- G.P.A of 4.40 halfway through his Junior year, thank ya very much. It is such whiplash, having two kids on the opposite ends of the educational spectrum but it doesn’t lessen my pride and joy for either of them. I know how hard Connor works for his grades, and Corrigan works hard for his marks too. They’re both perfect to me!