We’ve had sort of an ongoing saga the last few months regarding Keaton’s “tummy issues”, which is the polite name for a variety of digestive problems in our second-born. Around three and a half Keaton started having a bad reaction to ice-cream. It was just too rich for his system and it went right through the little guy. At first it was just large amounts- like if he had a big cone at a shop, but then it got so bad he couldn’t even have a bite without reacting to it. Rowan went through something similar at three but grew out of it before she was five so I honestly didn’t give it much thought, other than to lay off the ice cream for a few months. Only then things spiraled and the list of foods he reacted to grew to include cream-based pasta, then cream-based anything, then milk, butter and finally WHYGODWHY cheese. The list of foods grew so fast and the symptoms became worse and worse so I headed to Dr. Google who quickly diagnosed him with lactose intolerance.
We went full on dairy-free for a month to see if his symptoms improved. It took a few weeks but eventually he seemed mostly better which was… incredibly disappointing. In the Gunter house, cheese makes up four out of the five food groups so eliminating it from dinners was not a fun task. And I don’t know about you but a world without butter is not one I really care to live in. After a few weeks we noticed some flare-ups where a couple of symptoms returned so we, instead of trying to figure out when he had most likely accidentally been fed dairy {WHAT? WISHFUL THINKING IS SUPPOSED TO WORK, DAMMIT} , decided that it must not be dairy so we slowly reintroduced it to absolutely horrifying effects. WHOOPS. So yes, from then on we knew Keaton was definitely lactose intolerant but over the course of this past spring and summer it got steadily worse.
Now if you’re in the biz { uh, the lactose intolerance biz whatitsathing}, a lactose intolerant person needs to stay away from milk and butter and soft cheeses because their bodies can’t process lactose which is the sugar found in milk protein. This is caused by a lack or deficiency of lactase, which is the enzyme that helps to process that sugar. The good news is that most of the time hard cheeses, yogurt and “cheese-flavored” items are not an issue because they don’t contain high levels of lactose. Unfortunately we found, they were also becoming big problems with Keaton. By the end of the summer we couldn’t figure out why his symptoms were still getting bad and finally we realized the problem was the “Pirate’s Booty” snack bags we had been giving him, which contains “real aged white cheddar”. Again, this is a fully processed food made with a cheese that should not have even affected him so we became really concerned. Swapping cow’s milk for almond milk is one thing but not even being able to digest one damn goldfish cracker? Not right.
So this sent me back to Dr. Google because not only should lactose intolerant people not have reactions to a number of the foods Keaton was having but the symptoms normally take much longer to manifest. And that’s how it was when this all started a few years ago. It would take a ton of milk or ice cream or a full diet of mac and cheese everyday for a week to get a reaction but now one bite of butter noodles or a small square of cheese had immediate effects. So on top of lactose intolerance he has a dairy allergy which is a separate thing {these can go hand-in-hand but not all of the time}. Milk allergy is an immune reaction, LI is an enzyme issue. Keaton was meeting the criteria for both so I decided it was time to retire Dr. Google and head to the other kind of doctor, you know, the one with arms and legs and a degree.
So this September we began the process of getting Keaton properly diagnosed with the secret hope of getting him “fixed” {in our house “fixed” means he can eat pizza again, which is all the sweet little thing cares about}. I’m only a little embarrassed to admit that I held off taking Keaton is for so long because in my experience, and in the experience of many friends and family members, our hometown clinic isn’t known for its competence in figuring out anything more than a broken bone or strep. I didn’t want them to shrug at us or treat me like one of those moms that is looking for some nice big label to slap on her Special Little Snowflake. Eventually though, Keaton was miserable and I needed to know I was doing everything I could for him.
Surprisingly the doctor was really concerned at the severity of his symptoms and instead of giving me the “eh, he’ll grow out of it” line, she ordered a number of blood tests to rule out protein abnormalities and we were sent home with 8 {EIGHT} containers to collect… specimens… to check for unusual bacteria and/or disease. That was a really fun few days, let me just tell you. Everything came back normal, but she still wasn’t satisfied so she sent us to a pediatric gastroenterologist out in the city. This guy didn’t want to give me the time of day and barely listened as I ticked off Keaton’s symptoms knowing full well he thought I was one of those moms {and yeah, we all know at least one}. But then Keaton got up on the table for the exam…
Now, if you’ve met Keaton, you’ve probably also met his butt-crack. {I’m sorry I tried to figure out how to put that nicely, and, well, that’s pretty much it.} Since he turned three-ish, no matter what we did, we could NOT keep this boy’s pants up. I always assumed it was a genetic thing because neither Bill nor my dad have any discernible buttcheeks to speak of; their chicken-legs just morph right into their back and Keaton has the same body structure so I didn’t think about it until I noticed his tummy one day. Every morning before breakfast I’d help him dress and I’d cinch his adjustable waist pants as tight as they’d go because there is seriously nothing to this boy, he is all spindly in the limbs and his tummy is so flat it’s practically concave. But then immediately after breakfast, which would be something like, a banana and Cheerios or strawberries and waffles, his stomach would be huge. No, really, HUGE. Pregnant looking. His shirt would rise up and he would inch his pants down because they were pushing on his middle and causing discomfort. But then they’d ride low and become too loose, hence: Butt-Crack Magoo, which is what he’s known as around these parts. {I should say, he thinks his own butt is highly hilarious and doesn’t mind the nick-name, should you think we’re giving him some sort of butt related complex.}
All this to say, once that boy puts any food at all in his system, his stomach gets hugely distended, ridiculously bloated. This is the one symptom that does not clear up when we go lactose/dairy free. No matter what we put in him, his tummy puffs out. And upon seeing this, the doctor’s eyes got huge and he made eye contact with me for the first time since entering the room ten minutes before. “Whoa. This isn’t normal. That is just FULL of air. Listen!” He said of the echoing sound as he tapped on Keaton’s belly. “Uh, yeah, I know. I just told you about that. ” He then asked me to repeat everything I had just said from the beginning and after some thought we agreed to schedule an upper scope and a sigmoidoscopy to see what’s going on in there and to biopsy the tissue in his esophagus, stomach and intestines.
The procedure went really well, though I will say it is so strange and surreal to watch as your child is put under. Keaton is such an easy-going kid though, so there was no fear, no nervous build-up, only excitement over getting to watch Spiderman in his hospital room and getting to pick out which smell to give the mask as he breathed in the anesthesia. It took him longer than I thought it would for him to succumb and close his eyes and I have a feeling they didn’t give him the right dose because they told us it would take him a half hour to an hour for him to come to afterward and a very shocked looking nurse rushed to our room when it was over to let us know that “Um, so, he’s already awake and trying to sit up!” I asked Keaton if he woke up during the process or if he could feel anything and thankfully he said no, but it was cutting it pretty close.
The results of that showed he has an ulcer that is trying to heal itself but otherwise everything looked good, including normal results on all the biopsies. The two major things it confirmed was that yes, he has a severe dairy allergy and lactose intolerance and no, he does not have Celiac, which pretty much floored the doc. He said if you brought Keaton into a room of 100 docs ALL of them would immediately diagnose him with it as he “presents textbook Celiac”. I asked if I should try to remove gluten from his diet anyway just to test it {this is not something I want to do, I LOVE gluten, or rather I love food and gluten seems to be in 90% of it} which he didn’t seem too excited about and told me to hold off until we do a barium study to see if there’s anything wrong anatomically.
That brought us to this week, in which we trekked back to the hospital and had the poor kid drink quarts of that chalky crap as they x-rayed him over four hours. And again, I cannot emphasize how well Keaton took this, just happy to play his new Star wars game on the iPad as he sucked down the orange flavored barium, proclaiming it super tasty, which, GROSS. Think of McDonald’s old “Orange Drink” only thick and chunky. It might’ve had more to do with the fact that he had nothing to eat or drink since the night before. We haven’t gotten the results back yet, but the radiologist said everything appeared normal which will come as a relief to my mother who likes to remind me that her great uncle or grandpa or some such was born with an upside-down stomach and didn’t find out until he was an old man.
The dairy/LI issue will just be a part of life for him. When it’s this severe this young, it most likely means he will not grow out of it which isn’t the end of the world but it is a pretty big lifestyle change. There is no magic pill he can take to help him digest it better. Although they exist for adults, the pediatrician tells me they are all but useless and not recommended for kids. Cheese and butter are staples of Midwesterners diets so dinners are hard. Cheese and milk are huge snack items and staples of hot and cold lunches. And ohmygod don’t even get me started on pizza. Birthday party? PIZZA. Family gathering? PIZZA. School party? PIZZA. Crazy-busy run-around night? FROZEN PIZZA. Book-It reward? PIZZA. Friday night? PIZZA. You know what’s NOT fun for a five year old? Replacing all those PIZZAs with SALAMI SANDWICHes. And he loooooves pizza. I know in the kid-allergy department this is far from the worst thing to have to deal with. I can’t imagine what parent’s of kids with severe nut allergies must go through when sending their kids to school cafeterias which are packed full of peanut butter sandwiches that could seriously put their child in the hospital. I get that that is so much worse of a boat to be in than my inconvenient no cheese, milk or butter boat, but still.
The other problem you run into with kids that can’t have any dairy is that you tend to over feed them fruits and veggies, which then results in many of the same undesirable side effects that started this whole thing. For awhile the poor kid lived off of apples, oranges, grapes, peanut butter toast and hot dogs and… that’s it. What makes this suck even more is that he is my GOOD eater. He will try anything and not really complain even if it’s not his favorite. He almost never refuses food and eats good-sized portions. I feel so bad when he asks for more and all I have to give him is his 4th damn apple of the day.
I will consider my little guy very fortunate if the tests comes back normal. I don’t want something to be wrong, although if that something wrong could be fixed and this whole problem could just go away… well, that might have been more desirable that what we’re looking at now which is, pretty much no different from where we were three months ago. All the “normal” results leave us in pretty much the exact same place that we started in and I know Keaton just really wanted us to find him a way to have yogurt and pizza and cheese sticks like all the other kids in his class and nope, that’s not happening. The biggest mystery seems to be the stomach distention and while it’s not painful for him it does cause a fair amount of discomfort and once his modesty starts kicking in, a fair amount of embarrassment when he can’t keep his pants up. I’m sure I’ll find solutions for him. I guess I wasn’t too hopeful for any kind of resolve from his issues but I need to know, and more importantly, I need him to know that we did everything we could to figure this out for him. And while we wait for the answer, whether it be in the coming months or years from now, we’ll be there with him, our special little Butt-Crack Magoo.
My super kaduper life 