Issue 54: Ways to Survive ASD Parenting and Stay Thankful
Issue 58: Winning Ways to Share the Love with All of Your Children
Issue 81: When Special Education Fails to Be Special
Thirty pounds. That's how much weight Jeremiah has lost since December. It was gradual at first, a side effect we thought of recent medicine changes. There were many around that time because of the insanely unpredictable behavior issues we were facing on a daily basis, both at home and at school. It was so gradual at first, that we didn't even really notice. We welcomed the weight loss actually. He had become so physically aggressive, we were thankful for a little evening of the playing field, if you know what I mean.
Then, sometime in April i think it was, we began noticing his clothes becoming remarkably looser. His belly rolls were a thing of the past, as were his round face and full cheeks (the ones on his face and his bottom). We started paying more attention to his eating habits.
Lunches were coming home from school still packed and untouched, even some of his favorites. He began saying things he once loved now tasted funny or had bugs in them and he refused to eat them. And it wasn't just food. It was liquids too. He drank just enough to take his pills, no more and no less.
Breakfasts became a thing of the past. From three bowls of cereal to half a bagel to nothing at all. Add that to not eating lunch.
Dinner consisted of about three to four bites of meat only. Sometimes he might eat a spoonful of vegetables as a side dish. His beloved crescent rolls? Nope.
We were careful not to talk about our concerns in front of Jerry, but we were starting to have them and even share them with his neurologist, who has been seeing Jerry almost monthly since last October and has pretty much taken over as his primary care physician.
He thought allergies were the culprit at first. We tried an allergy medicine whose side effect was increased appetite...kill two birds with one stone. Nothing.
By about mid April or so, we were wondering how he had energy to do anything at all with how little he was consuming. We began letting him eat whatever he requested so long as he would eat. Subway? Ok. Chocolate ice cream? Ok.
Then the throwing up started. He would say he was hungry, take a few bites of whatever we made him, say he was full, turn pale within the hour, and then throw it all back up. Vomiting became such a normal part of his routine, we kept plastic bags in the car and my purse for when we were out and he would get sick. Would, not if.
We felt so bad for him. He was hungry. You could tell. Then a look of disappointment would come over his face a few bites in and he would push his plate away and watch the rest of us eat longingly while he grew paler and paler. Then vomit.
About 6 weeks ago, Jerry started losing one pound a week. The neuro changed his seizure medications to one that increased his appetite to try and get him to eat more. He succeeded in making him hungrier, and as a result much crabbier because of his inability to eat and keep anything solid down. A pound a week, still. And he would have nothing to do with liquid supplements like Ensure. I even bought tasteless, odorless vitamin sprinkles for his food to try and get some nutrition in him. He wasn't even eating enough of something so I could sprinkle vitamins on it first.
The neuro ordered bloodwork next. Results showed low thyroid, a side effect that should have resulted in weight gain, not loss. We started scheduling appointments with specialists to try and get some answers. Earliest appointments were weeks away. A pound a week.
Now, even though he was hungry, he was saying he was not. The idea of the upset stomach and throwing up afterwards made for a great appetite suppressant.
And let's pause here to explain something. Jeremiah has never been a picky eater. He loves food, all kinds, all the time. He woke up asking what we were having for dinner and was asking what he was having for lunch the next day while he was eating his dinner the night before. When we went out to eat, we would finish our meals, watch him finish his own and sit back, look at our leftovers and say, "You gonna eat that?" Then he would finish what we hadn't. He never wasted food! He loved food so much, we have often used it as a positive reinforcer, putting gift cards to some of his favorite restaurants in his treasure box at home and at school. Even those lost their appeal now.
We began to notice that chocolate ice cream, popsicles, anything not particularly solid was all he could keep down. It began to be all he requested. He would just watch us longingly as we ate what he couldn't. Every now and then he could tolerate and keep down a few bites of pizza here, some fruit there, a pretzel.
This past Friday, he gave one of his favorites another try. Subway buffalo chicken sandwich. He ate three or four bites of mostly just the chicken. An hour and a half later he was throwing up in the Sam's Club garbage can...in the middle of their cafe at dinnertime. Not a good advertisement for customers waiting in line to order dinner or snacks.
That was the last straw. We decided to take him to After Hours Pediatrics. After x-raing his belly and an initial exam, puzzled as we have been, the doctor there ordered two enemas be performed to see if impaction was the issue. This was not something we hadn't already entertained. Weeks prior, a friend suggested it and we gave him laxatives for two days to try and clean out any blockages. He went, but he still wouldn't eat and couldn't keep solids down. He just lost more weight. Still, it was worth another try because we did see poop on the x-ray.
Enemas were unsuccessful. They simply traumatized the poor boy who had never experienced the horrors of anything entering that part of his body before. Concerned, and not thinking it wise to wait weeks for appointments with specialists and then more weeks for their scheduled tests, the AHP doctor sent us straight to our local children's hospital for admission.
And so here we are. His team consists of the nurses, a pediatrician, a neurologist, and a gastroenterologist. After three tries because he was so dehydrated, they finally got an IV of fluids going into him. They also inserted a feeding tube into his nose to his stomach. The first thing to go into it was nearly two gallons in 24-hours of a liquid laxative. The goal? To completely flush out his intestines to rule out any impaction and prepare him for a possible colonoscopy.
After three more needle sticks, a myriad of blood tests have been run, some of which we won't have results from for up to a month. So far, results show normal thyroid, gall bladder, kidneys, liver, and no intestinal inflammation which could have indicated Crohn's Disease or ulcerative colitis. And because he tested gluten-sensitive two years ago, Celiac Disease is being ruled out. Those results should be back tomorrow.
I say tomorrow, but I really mean later today. It's 4 am. He woke up needing to use the restroom. I couldn't get machines unplugged and wheeled to the toilet fast enough and he had an accident...everywhere. The nurse had to come unhook his IV so we could get his shirt off and wipe him down before getting him back in bed...a bed whose sheets needed changing because he hit it too. He is somehow back to sleep already. For some reason, after being jolted from a dead sleep by, "I HAVE TO GO!", cleaning a moody, embarrassed, half-asleep teenager of liquid poo and all that implies, I can't fall back to sleep. And so here I am...blogging about it all.
In a few hours, they will sedate him and wheel him down for an MRI, with and without contrast. That's to compare to his last one done years ago to see if there is a neurological explanation for his appetite/upset stomach/digestion mystery. Then either today or Tuesday (I think it's Monday...#hospitaltimewarp.), they will perform an upper GI. They also mentioned a test that involves him eating some glow worm type pill or such that is also a camera so as to track it as his body tries to digest and eliminate it. Sounds weird, but cool.
I am a Christian. I am a wife. I am a mom. I am an author. In that order.