As the world outside my front door becomes more and more unrecognizable, I was able to find something good to dwell on last week. Ronan was given a great compliment. I was, too. We heard these at an appointment from a specialist who’s been providing some of Ronan’s care.
Stopping at the doorway of the exam room and smiling toward Ronan, the GI doctor said, “You look great! It looks like you grew since last time we saw you here.”
“Yep, in height *and* weight”, I happily said.
A few winters ago, Ronan landed in the ER. Long-time readers will remember that story and how a typical day went from bad to worse:
From The Perfect Patient December 2019 …The team of nurses and doctors were quick to help alleviate one of the problems, but we all agreed that with all of Ronan’s existing medical issues and complications, we were in the wrong place. Ronan would need to be elsewhere with a team of pediatric specialists who could evaluate and treat him. Not wanting to waste any more time, an immediate Emergency Room-to-Emergency Room transfer was ordered.
I’ve never had to follow an ambulance that was transporting one of my children. I hope I never have to again…
Readers may also recall that, with the help of some quick thinking medical people, things got a bit better.
…the team of compassionate caregivers and medical staff assigned to his care exceeded our expectations. I lost count of how many we’d encountered, but over the course of the two days he was admitted, at least 30 people personally evaluated, managed, and executed multiple tests and procedures for my son. That constant, direct care helped ease our minds. They collaborated and kept us informed of everything as things were happening throughout the stay. Best of all, they were able to determine what the major issue was that brought us to them, which meant that they could send us home with a treatment plan!
We’ve continued to keep in touch with the lead doctor and remain comfortable with the advice Ronan’s received under his care. Dr. M’s immediate response then, and his active involvement now, have helped keep us on a good path.
While driving to that recent appointment, I reflected on the problems Ronan had that brought us to this exceptional doctor. They existed long before Ronan landed in the ER at the children’s hospital. Ironically, we’d had an existing appointment with his office booked for the next month, but we were blessed that we didn’t have to wait for it. Dr. M could treat the acute problems, and he wanted to begin treating the chronic issues no one else cared to. We were speechless. Once we found our voices, we said, yes, of course, please. Please help us help our son.
Doctors we’d approached years before brushed off all gastro problems, even though GI symptoms and simple-to-treat diagnoses were more than obvious. I’ll never forget the time when a much sought after specialists told me he didn’t know why Ronan was having trouble pooping. Kids with more severe problems were receiving expert care from this doctor and his team. We’d hoped for the same, but after 2 appointments, we hit a dead end. At the sink while washing his hands after examining Ronan, that doctor literally washed his hands of us when he said, “It’s part of the autism. Talk to the autism doctor about it.”
I hinted, “But…it’s a pooping problem…can’t you address that?”
No, the GI doctor couldn’t.
And no, the GI doctor wouldn’t.
Then he walked out on us.
After that failed attempt, I tried working with another doctor at a large GI clinic. We didn’t get in to see the attending like I’d requested but were offered an appointment with a resident. Promised that she would be just as professional as the ‘expert’, I agreed to drive the two hours to see her.
After explaining as much medical history as I could and offering that Miralax, the go-to remedy at the time, did not work for my son, that doctor said she could help. Oh, thank the Lord! I thought, because we really do need some help. That’s when the young doctor excitedly went to a cabinet and pulled out a poster. On it was an enlarged illustration of the bowels with the words MEGA COLON across the top. Other words, like impaction and constipation were listed also. Giving me what sounded like memorized textbook definition of these GI problems, I politely said to her, “Yes, I know what they are,” I began, “and they’re exactly what I just described to you.”
“OH!” She said even more excitedly, “Then let’s get him to try Miralax.”
Baffled, I said, “But I just told you he didn’t respond to that, and that we’ve tried it several times. It even worsened the problem,” I explained.
“Oh,” the young doctor answered much less enthusiastically. “Well, if you don’t want to use it again, I don’t have anything else I can offer you.”
I started, “…you guys came highly recommended. I’ve heard you do testing, like motility testing, and some have said you’re beginning to do things with pill cams. Could my son be a candidate for some further testing?”
“No. I can only offer you Miralax,” she said.
“He’s not going on that again. I told you, it didn’t work,” I answered as I began to pack up our things. “Can I speak to one of the other doctors if you can’t help us?” She didn’t think so. They wouldn’t do anything besides the Miralax either. She told me that we’d have to try that first. Again. Even though it didn’t work.
I can usually recognize when an appointment heads in the wrong direction. I was stunned that this clinic, also highly recommended, focused on the autism and used it almost like an excuse.
“Well, it’s probably the autism that’s causing it…” the young doctor began.
I cut her off, “You can’t say that if you don’t bother to look deeper,” and then we walked out on her.
It’s true that some GI issues may accompany an autism diagnosis, but those issues should be, and can be, treated independent of an autism diagnosis. Had that been a priority for doctors who saw Ronan after those initial disappointing encounters, things Ronan has had to deal with might not have gone from bad to worse.
But they did.
And he’s still getting through some of it.
Which is why we keep people like Dr. M in our back pocket. He’s quick. He’s helpful. He’s kind. He’s able to see that yes, major disabilities and other serious medical complications exists. But he’s also able to see that his expertise can address, treat, and even help improve some of the GI issues that linger.
Ronan’s definitely made progress since that awful day back in 2019. Dr. M made note of that when we both recalled how scary that ER encounter was. It was awful. I was overjoyed, though, when he then said, “Mom, Dad, you guys are doing great! From a nutritional standpoint, keep doing what you’re doing.” As much as I’d like to not have to puree Ronan’s meals due to the type of GI and swallowing problems he has, we’ll keep doing that. He’s still not able to eat independently nor use the toilet completely on his own right now. But we have a team who’s given us access to supplies and useful suggestions for us to try. At each appointment since that really bad day, Dr. M and his team have been willing to go beyond our expectations to help us.
“Can I do anything else for you? Do you need refills, for me to order anything, or sign any paperwork? I can do that today, or later if you think of something…” How refreshing to be welcomed to a medical facility with open arms and to be offered more care than I expected.
Times are tough for so many people right now. Things may be tough for this doctor, but he didn’t let the outside world influence or interfere with how he treated me or my child. After we returned home, I thanked God for humans, like Dr. M, who go out of their way to build people up instead of tear them down. We don’t have to go back to the clinic for another 6 months, but I will look forward to seeing how much more progress Ronan can make by then. I’ll also look forward to being able to share that information with a doctor who truly cares about my son and others like him.
Cathy Jameson is a Contributing Editor for Age of Autism.