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.
TheDustSeason 
Oh for crying out loud! And with all due respect to your doctor friend, yes it’s hard to know what’s wrong when the patient can’t tell you what they’re feeling, but vets do it ALL THE TIME. Usually, at least in part, by listening to the verbally able person in the room!
Re going lactose free, I encourage you to test drive the various milk substitutes that are available. I’d avoid soy, since that’s also a potential allergen, but he might actually enjoy chocolate almond milk in place of regular milk, and you will likely find something else for your coffee and cereal. Also, Baskin Robbins makes DELICIOUS non-dairy ice cream – several flavors, every bit as good as the dairy version. Lastly, if you like cooking with milk, hemp milk is a wonderful, creamy substitute – you may have to add water, it’s so rich, eg when making a white sauce. Coconut milk ditto. You can also get non dairy cheese that tastes like the real thing. The Girl Child is vegan and I learned all this when she was visiting earlier this year.
LikeLiked by 3 people
So far, I’ve used ghee and coconut milk to make butter chicken. That turned out great. Ghee apparently is what’s left when you “clarify butter” which I understand to mean: take all the stuff out that causes the problem. We’ve invested a small fortune in Daiya cheese substitutes, but I have yet to find a cream cheese alternative. Not sure if that’s possible. He hated the coconut milk yogurt though. So, somethings may be irreplaceable. Thanks for the suggestions!
LikeLike
Also … You’re probably doing this, but sometimes we forget the obvious when were in the middle of a crisis situation … Are you keeping a food diary? Tracking everything he eats, and recording relevant behaviors?
LikeLiked by 1 person
Um, mentally. Yeah. But not on actual paper. That would be a good idea wouldn’t it? (Doh.)
LikeLike
Oh, and one last thing … Try making a batch of bone broth, and see if he’ll drink a cup every day (or add it to stews, soup, etc.) I sometimes have gut pain, reflux an (blush) gas, and it really does make a difference. But it’s worth making your own. Apparently the stuff one buys is more broth than bone. Google can tell you why it’s good.
LikeLiked by 1 person
Might not be able to get him to take it. He is very limited in his diet. But, I’ll at least investigate the possibilities.
LikeLike
Oh hey, I just was reading up on the bone broth and I did not know this was good for osteoarthritis. Even if the kid won’t drink it, maybe it will be good for me! Thanks for recommending it.
LikeLike
I have many the symptoms of leaky gut syndrome, and I find it AMAZING. The bone taste can take getting used to, but it’s worth it. I freeze it in jars, and then just keep one jar in the fridge. Heat in microwave, sip as much as I want, and put it back in the fridge. It lasts forever! It also makes soups, pot roasts and stews absolutely delicious, and that’s a good way of getting it into people – like the Hubbit – who won’t drink it.
There are a lot of recipes on line, and some work better than others … I think I’ll post about it, so Watch My Space… 🙂
LikeLiked by 1 person
I will keep an eye out for your bones!
LikeLiked by 1 person
Bitter melon and fish with chili is one of my favorite foods. Here’s the recipe (along with the irrelevant personal anecdotes…sigh) https://eatwhattonight.com/2017/05/fish-fillets-with-bittergourd-in-black-bean-sauce/
I can’t speak to the rest of your post. It sounds like a nightmare and I have no way to wake you from it, but I would if I could.
LikeLiked by 1 person
The recipe you sent referenced one of the reasons I want to try to cook bitter melon–it regulates blood sugar somehow. It seems to be recommended for people who’ve had cancer–to help maybe prevent cancer growth. I’m not entirely sure of the veracity of the claims, but I am trying to think outside the box a little bit. Thousands of years of culture can’t be entirely wrong about something like this, can it?
LikeLiked by 1 person
When I was in China, many people around me — including my ex — got hepatitis. I didn’t. Every morning I went to the Chinese medicine doctor on our campus and got a bag of herbs that I went home and brewed in a special pot. I am sure that tea kept me healthy. I also used to drink Gan Hu Cha (tea for staving off colds) at the first sign of the flu or a cold. It definitely reduced the symptoms once the cold hit. It’s best to cook bitter melon the day you get it — as you learned.
LikeLiked by 1 person
Yes! Bitter Melon is very unforgiving of procrastination!
LikeLiked by 1 person
I am currently dairy- and soy-free because my newborn has trouble digesting those proteins. Pinterest is my friend for searching recipes! I do a lot of Asian cuisine that doesn’t rely on dairy (if soy ends up also being a concern, Meijer carries a sauce called No Soy that easily replaces soy sauce). We use almond milk (unsweetened, no flavorings) in place of regular milk – it makes awesome pancakes – and Earth Balance “butter.” I also want to try oat milk soon, since that creates a lot less waste than almond milk in the manufacturing process. I haven’t found a really great cheese substitute yet, but adding nutritional yeast into sauces can give those a cheesy flavor (I recently made a butternut squash sauce for pasta that was rad).
I really empathize with that feeling of standing in front of your kid, knowing something’s wrong, but having no idea how to help! It’s a gut-wrenching feeling, for sure.
LikeLiked by 1 person
Nutritional yeast? I think I’ve heard of that…not quite sure whether Meijers carries it though, I’ll check it out. Thanks.
With autism, it can be very hard to get the kid to eat anything when any aspect of it changes. Color, texture, smell, taste are rigid preferences. They changed the packaging of his yogurts and he balked at eating them. It was the exact same bloody content, but a different artwork and color on the plastic container made him refuse it. Now, it’s probably an okay thing that he’s not eating it! It’s good to hear that people find answers–if they look hard enough. Thanks.
LikeLike
I developed lactose intolerance at an older age. I’ve never been able to digest bean protein.
LikeLiked by 1 person
So now I only drink lactose-free milk and I keep the lactase enzyme pills around for encounters with food that might contain lactose.
Legumes have been a bigger problem. Not only do they cause significant digestive problems but my palate just won’t accept them. This caused a major upset when a local fast food place started cutting their hamburger with soybean meat substitute without telling anyone. Beano doesn’t help.
Start by eliminating one food, say wheat. If it doesn’t improve, eliminate a second food, say cow’s milk. Keep doing that until you see a major improvement and eliminate that food from his diet forever. Then keep going. Eventually, you may get down to a very small number of foods. Then you start adding back in the foods that elimination didn’t seem to help. Any food that causes a relapse also gets the forever elimination treatment.
It may be possible the problem is in his intestinal tract and not his stomach. You might try a Low-Residue Diet.
https://www.webmd.com/ibd-crohns-disease/low-residue-diet-foods#1
Throughout all this give him a multivitamin to make sure he still gets the vitamins he needs.
Is it possible to set up an appointment with a specialist and time it to be in the middle of one of his violent reactions?
LikeLiked by 1 person
You know, we started getting the kid to eat Spinach this summer. I never considered spinach might be the problem. However, he doesn’t have it with every meal, so it is less likely. I was so grateful to get A vegetable into him, but he won’t eat it cooked. I may lay off it for a while.
Autism means the kid doesn’t eat a lot of what is forbidden on the Low-Residue diet. Except prunes. That was another one I was really glad to get into him because his problem has been constipation. We can lay off the prunes and spinach and see if that helps. Thanks.
I think I will call his pediatrician again and ask if we should get appointments for allergist and dietician since appointments are going to be months out anyway. Part of the problem has been my lack of going out and demanding answers. I kept hoping we’d figured things out…and then the problems keep happening.
LikeLike
That’s one the kid doesn’t eat. Except for peanuts. He’s never seemed to have a problem after eating that…except that it’s usually all over his hands, pants, floors, and walls.
LikeLike
The pharmacists puzzled comments about the Cyproheptadine being an allergy med brings to mind a situation in our household. I’ll share it here, for what it’s worth.
Hubby has been plagued with un-diagnosed digestive issues his entire adult life. The symptoms are pain in the gut. He lives with it and refuses to get treatment. He knows what foods and/or quantity of food will cause pain, but instead of eliminating or reducing, especially the ones he loves so much like peanuts or cookies and sweets, he self-medicates- with Diphenhydramine (Bendadryl. ) Sometimes, before the meal, because he knows he’s going to have a bad reaction.
It works.
He figures that he has an all-purpose histamine intolerance, and the antihistamines are all he needs.
It could be that he’s right, or it could be placebo effect.
I am not endorsing his methods. As a matter of fact, it bothers me that he relies on a steady diet of the drug, but who am I to argue with success? If it works, don’t fix it?
Any way, I wanted to share this to say that perhaps the ER folks might be on to something.
And I wish for speedy resolutions to your son’s current painful situation.
LikeLiked by 1 person
Thank you. I appreciate other’s insights into the situation. It’s so hard when you just don’t know the answers.
LikeLiked by 1 person
it’s incredibly easy from my end of the conversation – you, on the other hand, are in the thick of it, battling a cold, concerned for your son’s health and safety, and fighting the system. Not to mention a myriad of other factors that contribute to confounding and unwanted headaches and heartache. I wish you well.
LikeLiked by 1 person
Lactose-intolerance (and/or milk allergy – I have both) is certainly a possibility, as are other food allergies. Can he have skin-prick testing by an allergist to test suspected foods? Does he react more violently after certain meals/foods as opposed to others? Speaking from experience, food allergies cause gastric distress that’s uncomfortable – from mild to severe – but have few other observable symptoms (except maybe diarrhea, but not always). Some can cause anaphylactic reactions, like my allergy to shellfish; something I didn’t realize I had until skin-prick testing. My milk allergy, in addition to stomach cramps, caused an inner ear issue of all things; that’s what led to the diagnosis at age 18, when I found out I’d been fed goat milk as an infant because I didn’t tolerate cow milk, but I spent most of my childhood drinking milk so symptoms can vary/change with age. If nothing else, the testing might eliminate possible causes and keep you from spending time and energy focused on the wrong suspected culprits. Good luck; I can only imagine your stress and exhaustion.
LikeLiked by 1 person
I don’t know if the kid would tolerate a scratch test. It’s frustrating because he’s eaten the same food for years without a problem. But something has changed, and it’s definitely driving me crazy. Thanks for the suggestions.
LikeLiked by 1 person
I did a quick search, and found these possible suspects to run past your doctor: Irritable Bowel Syndrome, H-Pylori infection in the stomach, gall bladder, or gastritis (probably not, given the meds he’s on). HUGS!
LikeLiked by 1 person
Unfortunately, the doctor is of the see-them-once, follow-up with a nurse, dismiss patient until scope is done, variety. I’m not saying this isn’t how it’s usually done, but it is very frustrating to go home with no instructions or help from the office. In my mind, something is definitely wrong every time he eats, there tends to be gassy irritation. Maybe it’s just diet, but maybe suggest we see a dietician or allergist for evaluation? Perhaps I’m supposed to be more insistent. I don’t know. It’s the not knowing what to do when the doctors don’t know what the problem is. I think years of watching House gave me unrealistic expectations of physician care.
LikeLiked by 2 people
LOL! I’m lucky to have a GOOD doctor. Our little town seems unusually blessed with good ones, although there are some stinkers, too, for sure. My mother was unable to swallow for the last five years of her life, and took everything through a stomach tube. Besides omeprazole (which we pronounced OmapraZOle, and talked about which sauce was better on it), we also ordered Motillium from Canada. Her gastroenterologist prescribed it. So maybe a GI specialist could help? Just spitballing. And maybe a new doctor to begin with?
LikeLiked by 1 person
The doctor we’ve seen is the GI specialist at the Children’s Hospital. He even has an autistic child, so he was very nice about seeing us. It just hasn’t produced much in the way of results. Very frustrating to be sure. But desperation is the mother of invention. (I.E. Desperate Mothers Invent ways to figure it out on their own.) But thanks for spitballing.
Also, I am sorry your mom had to go through such an awful situation. Not swallowing for five years! I can’t imagine how miserable that was. I’m glad you were able to find a sense of humor despite everything. (And I suspect Molé sauce would be best served alongside OmepraZolé!) I will now think ‘Olé’ everytime I give the kid his meds!
LikeLike
You must have the patience of Job.
LikeLiked by 1 person
I wish. I snap like a dry cracker on the really bad days. Most days, I just want to cry for how miserable he can get. But eliminating foods has minimized some of his reactions. Some. We still try things we later regret. (Of note: popcorn, any kind of peppermint, chocolate, and any hard candies are to be avoided.) It’s going to be hard going out at the holidays and getting him not to eat everything people set out! Thanks for caring enough to read something that likely does not impact your life in the least. That means a great deal to me.
LikeLiked by 1 person
I know it’s hard what you and he are going through – and it’s amazing how well you’re bearing up ! Keep your head up and enjoy the holidays ! 🙂
LikeLiked by 1 person
I’m going to find a way, if it kills me. That said, I really need to lay off the Law & Order reruns. I’m starting to dream of Lenny Briskow and Jack McCoy. Sadly, I am being brought up on charges rather than any more salacious imaginings.
LikeLike
Prurient dreams ? Who’d a thunk ? 😀
LikeLike
Geez K, that is the pits. I wanted to mention that I had a sizeable gall stone that seems to have been around for a year or more, and only vomited once, and that was on the plane coming home from Italy. For the most part I would get horrible pain after eating, with belching and occasionally nausea, and had constant acid reflux that made my entire abdomen burn along with the strangest sensation that my abdomen was being squeezed. I think it was muscle spasms. I also struggled with constipation peppered with episodes of diarrhea. Larger meals were the worst trigger. The less I ate the better I felt. So gallstone symptoms don’t necessarily include vomiting.
I feel so bad for your boy to be suffering so much and have no way to communicate his anguish. I feel for you as a Mom to have to stand by and wait for the medical establishment to get off it’s ass and help. I know there are protocols and all that bs the insurers put us through, but God sometimes it would be nice to see someone get the help they need without having to fight so damn hard to be heard. UGH I wish I could do something for you. Best Wishes K. Hope what you are doing continues to help.
LikeLiked by 1 person
I appreciate the insights. I’m tracking his food now. (Previously I just noticed it but didn’t write it down. Because I am slow and don’t think well while combating my son’s explosive rages.) I’ve also read up on what foods trigger acid reflux the most. Apparently corn does–like popcorn–but not corn chips. Go figure. But this makes sense of why one hurts him and the other didn’t. Everything in moderation is hard because the kid acts like he is starving all of the bloody time. And eats way too fast. So, I’ll try to minimize portions and stretch meals out longer to see if that helps. Thank you for reading. I do appreciate all the good advice I’m getting.
LikeLiked by 1 person
My stomach felt hungry a lot as I recall, but in that strange achy way, and I think it was muscle spasms or something. Good Luck with it K. I know you both need answers.
LikeLiked by 1 person
Cheese and rice, K.
I feel terrible for you both. I’m glad you’re seeing some improvement in his symptoms, and I hope you will get answers and treatment so he can make a full recovery.
My own experience is that autistic kids do make patterns like the dr said — of course they do, you know they do — but when we’re getting to a point of self-harm, no, I really don’t think that’s a pattern he’s trying to recreate. I think he’s in pain and is trying to cope.
I had gallstones for YEARS and didn’t know it. Didn’t piece it together. It was too inconsistent. Extremely painful, but I always dismissed it as something the kids (I taught or my own) gave me. 1999-2006, maybe ten times. And imaging made it look like I ate a box of bbs. They told me I didn’t fit the pattern. Most people who have them have pain after every meal.
I don’t know much about lactose intolerance, but I do know that it causes pain, so maybe you’re on to something with the milk.
Gosh, January 21 is far. 😦 I’m really hoping you both can get through without more damage. And I hope you take comfort in your bitter melon recipe once you’ve got a fresh one and some more chutzpah.
LikeLiked by 1 person
Thank you, Joey. I’m working on patience and caffeine. Let’s hope neither one runs out before we can find answers. I appreciate your insights. And just having someone listen and care.
LikeLiked by 1 person