Back in June, K’s motility specialist wrote a prescription for a medication called Periactin. It is a first generation antihistamine (like Benadryl), but it is pretty much worthless in that capacity. Instead it functions really well in a few different “off-label” ways and K has been on it twice before…once as a migraine controller and once as an appetite stimulant. It didn’t work great in either capacity for her back then. We tried increasing the doses, but the side effects made it a no go before we saw good results. So, when the motility doc wrote for it this time (to help with gastric accommodation…the stretching the stomach SHOULD do when food goes into it…and appetite) I was not super hopeful. At that point, though, just about anything would have been worth a shot!
It took us a while to actually start her on the medication due to her hospitalization and temporarily non-functioning stomach, but we started her on it a few weeks back once a day…then last week we went to twice a day…and now she is up to three times a day. You guys, it has been UNBELIEVABLE. She is HUNGRY and she is EATING! Yesterday she took in 722.5 calories by mouth. In case you are new to K’s story and can’t appreciate the significance here, I’ll explain it. You know how people like to say “She’ll eat eventually! Nobody will starve themselves to death!” about picky eaters? That is 100% untrue where K is concerned (and it would be fine by me if we all made a little agreement to stop saying that to parents of kids with feeding disorders. ;)). She neither feels hunger nor acts on it appropriately. On top of that, she has fairly severe sensory issues and a extremely limited diet. Typically, when she is feeling good enough to do so, she will graze a little through the day. No meals. We pack her a breakfast and lunch for school every day and it usually ALL returns home. She gets almost every bit of her nutrition from formula pumped into her stomach by a machine…and prefers it that way because eating is not important (and not even that enjoyable much of the time) to her. While feeling hungry and then eating something is normal for you or I, for K it is NOT NORMAL. It is a miracle.
Yesterday went so well that today we decided not to do tube feedings today as long as she was eating. She took in 1,010 calories by mouth today. I only used her tube for meds and some additional fluids (she still isn’t drinking much)…I cannot remember if that has ever happened in the almost 5 years she has had a tube, but I am pretty certain it hasn’t. We will still give her an overnight feed for some additional fluids and calories, but she supported herself all day with oral intake. She was three the last time that happened, I think…and only because we were more or less forcing her to drink 3 bottles of Pediasure every day which is not all that different from tube feedings (though it is way more stressful).
I know it is medication-induced and these results will probably not last forever (though I’m hopeful we’ll be able to keep it up for a while), but that doesn’t matter. Even if it was just for today, it would still be worth rejoicing over. TODAY K did something that billions of people take for granted…something that she could never do! She was HUNGRY and she ATE! Sometimes having a kid like K is hard, but in the midst of it all there are these miraculous moments tucked away…moments “normal” people with “normal” kids never really get to experience. The first time your 18 month old uses her walker to get across the living room. The first time your 2 year old walks independently. The first time your 18 month old says MAMA and reaches for you…not only echoing a word, but MEANING it. The first time your kiddo makes it through a PT session without screaming. The first time your 4.5 year old wears underwear. These little moments that other people may or may not even take note of become so much more than that…they become these moments of pure, crystallized joy. Joy that you will always remember, even if the next PT session is filled with screaming or if you are still washing soiled underwear on a near-daily basis when your kiddo is 8 and counting or if she forgets how to say MAMA for months after that one perfect moment…or even if you go right back to tube feedings 4 times a day after a day of good eating. It still happened and that in itself is worth rejoicing over! It was a miraculous day!
July 8, 2013 at 9:33 pm
Wow, wow! Go Katie! So thrilled for you. And your last paragraph made me teary. Yes, definitely joy there when miracles happen 🙂
August 12, 2013 at 8:16 am
Way to go K! And I also got choked up reading your last paragraph. Know those moments well. 🙂
October 17, 2013 at 9:47 pm
OMG THAT IS AWESOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!! No tube feedings? 1,101 calories?!? PHENOMENAL!!!!