Dear Gastroenterology team,
You’re fired. Want to know why? My son was recently admitted to the hospital with a bowel obstruction. You see, we’ve battled constipation all his life. Early on, if he got backed up, we’d give him a suppository or enema to get things moving. Those interventions are no longer possible for a 17 year-old with autism. A few years ago, we saw a doctor in your department who prescribed Miralax. Capfuls and capfuls of Miralax until his bowels moved. Daily doses of Miralax to keep things “regular”. Do you know it’s not “regular” to pump your child full of a chemical called “Polyethylene Glycol” (antifreeze is Ethylene Glycol) to make his bowels move everyday? Do you know when you regularly use an artificial method to move the bowels that they get “lazy” and stop functioning on their own? And did you know that if you “rush” things through the system, vital nutrients get flushed out of the body before they can be absorbed? The only thing being absorbed through my son’s permeable gut was probably the Polyethylene Glycol you say is too big to be absorbed and therefore deemed “safe”. This is just guessing on your part. You have no idea what that chemical is doing to his body.
Back to the emergency at hand. As we were waiting for you to come in with the x-rays, I heard you in the hallway talking. I heard the word “surgery”. I looked at my son, lying there on the gurney, his feet hanging off the end because he is so tall. He was absolutely miserable. Guilt swept over me. Maybe if I had just given him those daily doses of Miralax, we wouldn’t be here right now. We were presented with the options and we chose the lesser of the evils. More laxatives. You fed a nasogastric tube into his nose, down his throat, and into his stomach. Then you began pumping in laxatives. And we waited. Anytime I would look away from him, he would try to pull the tube out. I stayed awake for 40 hrs. straight staring at my son. When family came to relieve us so I could get a bite to eat, he immediately pulled out the tube and we had to endure it being placed again. When the laxatives began working, we were both relieved. No surgery. The nurses at the hospital are saints, by the way, for dealing with the messes in such a cheery manner. They never once made Sam feel bad and they maintained as much of his dignity as they could. Three days later, we were cleared to go home. Crisis averted. I do thank you for helping us to avoid surgery. We were sent home with specific orders: a capful of Miralax morning and night. High fiber foods. Lots of water.
It did seem odd to me that at no time during our hospital stay did anyone ask what his typical diet is. What other medications or supplements he was taking that might be causing the issues. Or whether or not he had been checked for yeast, candida, or parasites. I chalked it up to the emergency status of the situation and assumed this would be covered at our follow-up appointment.
Three weeks later, the follow-up appointment was rushed. You didn’t ask about his diet, medications and supplements, or yeast. Instead, you suggested a sedated test to be sure the nerves were working properly so that he feels the urge to go. I know he feels the urge to go…I catch him all the time sitting on his foot withholding his stool. It felt like you were chalking everything up to his autism. Like it’s “normal” for autistics to have compromised guts. It’s “normal” for them to have withholding behaviors. It’s “normal” for them to be admitted to the hospital for cleanouts on a regular basis. Some parents I’ve talked with have them built into their schedules! They know that about every 3 months, they’re going to have a hospitalized cleanout. This is insane!
Yet, we followed your advice because as much as I hate the laxatives, I hate for my child to be in pain and hospitalized a lot more. But still, a month later, we were fearing another hospital stay. The increase in fiber, water, and Miralax wasn’t moving things. He was sitting after every meal, taking advantage of the natural contractions of the intestines following intake of food. I begged to do the cleanout at home and you relented. He drank a whole bottle of Miralax mixed with diluted juice and took two Dulcolax. The cleanout was “successful”. But it felt like failure. Having to rely on a chemical to move your bowels is not normal! And what was it doing to his body? This kid’s methylation pathway is compromised. He doesn’t detox well. What was happening to all the chemicals I was pumping into him?
It’s mind-boggling to me that a Gastroenterology team based out of Children’s Medical Center, who treat children for a living, never once asked about his diet, his meds/supps, or pathogens in the GI tract. You don’t seem interested in getting to the root of the problem, only throwing laxatives at it. This is not a fix. It’s a band-aid. A very poor band-aid.
So once again, I had to take matters into my own hands and do my own research. Sam is taking Nystatin now to address his Candida overgrowth in his gut. Candida is a major contributor to constipation. If you don’t address it, it simply gets worse. Did you learn that in medical school? Did you learn that some kids can’t eat green beans, the #1 food you recommended, because they have high Oxalates? Sam has high Oxalates. In fact, many of the foods you suggested he can’t eat. But you never asked about any of his lab work, did you? Did you know that sugar and corn feed yeast? Did you know that mild hyperbaric oxygen therapy helps kill Candida and improves gut health?
And this one might shock you…did you know that there are natural ways to address constipation? I know, mind blown, right? Laxatives are not a cure for our kid’s compromised guts. We have changed Sam’s diet to now include fermented foods. Bet you didn’t know they’re good for gut health. We also started giving Sam Magnesium Citrate and Aloe Vera Juice, both natural laxatives and good for you. He takes digestive enzymes and probiotics. We’re working on healing his gut, improving his diet, supplementing with natural bowel supports, and modifying his behavior. He automatically sits now after every meal and more often than not, has success. I haven’t seen the withholding behaviors since we got things moving naturally.
We still get nervous from time to time and consider adding a capful of Miralax, or as recently as yesterday, consider a full cleanout. But instead, doubled the dose of Magnesium Citrate and gave two capsules of Smooth Move (natural Senna and herbs to stimulate bowel activity), and do you know what we got? Shit. We got a lot of shit this morning. And a happy boy.
I don’t understand your motivation for simply prescribing laxatives. Does it increase the odds of repeat customers? Do you treat typical children differently than the autistic ones? If you just assume their compromised guts are part of their autism, you’re right and you’re wrong. Yes, most kids with autism have compromised guts (either chronic constipation or chronic diarrhea), but it’s not normal. And it can be treated. Yes it takes time and patience, and a better understanding of why their guts are compromised. It takes some lab tests to understand the pathogens and unique challenges faced by these kids. But it can be done. It should be done. You took an oath to “first do no harm”. By slapping a band-aid on these kids you are doing harm. And no parent should just stand by and let you do it. I, for one, will not.