Thanksgiving was one of the roughest weeks I have had this year. Technically, it was rougher on the kid than on me. But misery rolls downhill, like Jack and Jill, leaving you with a busted head and an empty pail.
For months now, I have been trying to figure out what is causing my kid to erupt with pain-filled sobs and violent outbursts. My son’s last day at school was Tuesday. Wednesday he woke up with some kind of virus and was a coughing, hacking mess by the holiday itself, passing his germs on to me. (Uh, thanks?) So we stay home and away from other people.
(My mom braves exposure long enough to drop off some vittles. Thanks, Mom.)
Almost every single day of our ‘vacation,’ my son gets violently angry, to the point that I eventually take him to an emergency room on Saturday–to no avail. Because when your child is autistic and non-verbal, the Emergency Room rarely helps.
I explain to the staff once we finally get in to see someone:
“He’s been gassy, burping, and miserable for months. I throw a ton of antacids at him after meals, plus Simethicone, and Omeprazole and he’s still having problems with his digestion somewhere. He becomes violently upset, crying and hurts himself to tell me he’s in pain.”
I pour out the history, the attempts to solve the problem and that it seems to be getting worse each day. The doctor is sympathetic as she checks to confirm my child isn’t constipated, doesn’t have any signs of tenderness in his abdomen–now, after the episode has subsided–and listens to me talk. At the end of this, she says something that makes me so angry I’m speechless. It’s been a week, so I’m paraphrasing here:
“With autistic children, they sometimes learn a behavior and repeat it even if there is no sign of the original cause. The burping might be a habit he’s learned.”
They basically imply that my kid might be pretending to be sick and that I’m an idiot for not seeing it. And they send us home, with not much help besides calling in a prescription for yet another drug, this one supposedly to treat his gastric problems. Cyproheptadine is its name.
The pharmacist who is processing the order listens to my tale of woe–from the drive through lane because I just can’t face going into the store, I’m so sick and tired. Literally–I’ve caught my son’s virus and have been running a low-grade fever for much of the day.
The pharmacist sounds puzzled and says:
“I’m not sure why they are prescribing this for his stomach, the drug is a type of allergy medication.”
Now, in mad-mom mode, I rage against the universe singing a chorus of “WHY IN THE HELL…?” Eventually I calm down and decide to call a friend who is a doctor and, while not capable of making a house call from a hundred and eighty miles away, is willing to take a phone call despite being home on vacation herself.
Once more, I pour out my story. I’m livid and desperate and emotionally spent. I explain that I don’t know why they sent us home with an allergy medication and especially why no one seems to be taking my son’s medical problems seriously.
My friend talks me down off the very angry cliff I’m on. Again, I am paraphrasing. You’ll have to read the following with a very sympathetic voice in your head. Imagine if Gandalf were a woman…and a hobbit…with a very warm personality. My friend is very wise…and a bit on the petite side.
“It’s difficult diagnosing when the patient can’t tell you what symptoms they are experiencing. Not without doing some invasive testing which they can’t really do in an Emergency Room. So, the doctors do the best they can. Cyproheptadine is an old-fashioned medication, it’s been around for years, and has been used to treat nausea.”
This friend goes on to reassure me that it is okay to ask questions and, when we go back to the G.I. specialists, to request additional procedures to evaluate my son’s condition. She also suggests I increase the Simethicone because it is safe to do so. I thank her and let her go. I give the kid the questionable medicine and hope for the best.
About three hours later, after dinner, my kid explodes again with violent rage. He’s crying and biting his arms. He throws my favorite mug across the living room–right at a window. Fortunately, it hits a stained glass work hanging there. The art breaks, but the window doesn’t. It is the only good thing that hasn’t happened today.
I dose the kid with four antacids, two simethicone, one omeprazole, his ‘calm down’ medication and tons of water. After about an hour, the pain subsides, and he is calm again.
Sunday, I have an epiphany. If eating is causing the problem then let’s limit the most likely suspects. (Insert Hallelujah Chorus here.) I decide to put the kid on a restrictive diet: gluten- and casein-free. For those of you who don’t know, this means no wheat or dairy products. (Basically, the kid can eat fruit and air.)
The Casein/Gluten-Free Diet is a thing I tried when he was about two that showed no signs of making any difference whatsoever to his autism, but did cause a weight loss of five pounds in just six weeks. I gave it up then because I didn’t see that it helped. But now, I am beyond desperate. The kid has these reactions about two hours after he eats. It took a lot of episodes to pinpoint that there was a corollary between food and explosive violence.
By Tuesday, we are back at the GI department to review the plan and seek additional testing. They too are conciliatory but doubtful that my kid has a digestive problem. He just doesn’t have enough symptoms. I’m willing to agree that, maybe, some of it is autism, but there is a definite pain component and that I want testing. So, they agree to schedule a scope of his stomach.
The next procedure available isn’t until January 21. They basically are sending me home with a child who has violent rage following almost every meal. But, because he doesn’t vomit, it isn’t believed to be any of the likely suspects–like an ulcer, gallstones, or gastritis.
The nurse practitioner gives me this last advice:
“You should just try eliminating the milk from his diet instead of doing both at the same time. It’s a more likely cause for problems than gluten and it will be easier to know what the problem is if this helps.”
The kid has been off dairy–when I can keep it out of his massive teenage grasp–for almost a week. There has been a noticeable improvement–but since he’s also been on the Cyproheptadine, who knows what has made the difference? He still reacts when eating greasy food–even lactose-free popcorn caused a problem and cookies made with Crisco and lactose-free chocolate chips set him off. But the incidents have been more manageable and I’m cautiously hopeful an answer has been found!
We will just have to muscle through these trials and hope like hell that the scope actually shows something to pinpoint a cause besides “Autism.”
So, this article is for the parents out there–Autism-flavored or otherwise. The ones who stare at their sick kid without knowing what is wrong or how to help. There is no greater frustration than knowing something is wrong and not being able to help your child. Except maybe when the professionals suggest that it might be all in your head and then send you home with a panacea. That’s a whole ‘nother level of rage-inducing aggravation.
As for the title of my piece, while I survived the Thanksgiving From Hell, I watched a video about a traditional way of preparing a bitter gourd from Asia.
(Side Note: It is weird and wonderful how you can travel the world simply by watching YouTube videos.)
I recently went to lunch with a cousin at Indian Masala and, afterward, we toured the neighboring Indian food store. There, a woman showed me this odd, bumpy vegetable and I bought one, wanting to try something new. But new is daunting, hence my trip down YouTube land.
You can find the hypnotic cooking lesson here: Bitter Gourd Masala Curry Video. I watched the whole thing, finding comfort in foreign things. I marvel watching this little Indian woman, who looks to be in her seventies, slicing the fruit against the edge of a blade held at her feet, curve up. I honestly don’t know how she doesn’t slice her thumbs off while doing this.
Something about the process is soothing in ways that the producers of Healthy Village Food by Grandma don’t intend. Or maybe they do. Perhaps there is a universal need to feed the soul, to heal what wounds you with food. Struggling to find a way through my child’s digestive distress–finding foods he can eat without causing him pain–has made food an enemy. I’d like us to be friends again.
I finally went to cook my bitter melon–only to discover it did not survive a week in the refrigerator. There is probably a lesson in this, beside needing better crisper-drawer time management, but learning will have to wait until I can get back to the India Market. Until then, I will anticipate better days and melon-aid videos to get me through the rough times.
Post Script: If you’ve struggled through diagnosis mysteries or just getting through life with lactose intolerance, I’d love to know how long it took you to solve your riddle. I’m feeling like an idiot that it took me forever to see a pattern.