Making an Affect – AGE OF AUTISM
By Cathy Jameson
Since the world on my doorstep is getting unrecognizable, I was able to find something good to stay with last week. Ronan received a huge compliment. I was too. We heard this at an appointment from a specialist who was partly looking after Ronan.
The GI doctor paused at the door of the exam room and smiled at Ronan. “You look great! It looks like you’ve grown since we last saw you here. “
“Yes, in height * and * weight,” I said happily.
A few winters ago, Ronan landed in the emergency room. Longtime readers will remember this story and how a typical day got worse and worse:
By The Perfect Patient December 2019 … The team of nurses and doctors quickly helped alleviate one of the issues, but we all agreed that with all of Ronan’s existing medical problems and complications, we were in the wrong place. Ronan had to be elsewhere with a team of pediatricians who could examine and treat him. In order not to lose any more time, an immediate transfer from the emergency room to the emergency room was ordered.
I’ve never had to follow an ambulance to carry one of my children. I hope I never have to …
Readers may also remember that with the help of some quick thinking medical professionals, things got a little better.
… the team of empathetic nurses and medical staff assigned to him exceeded our expectations. I couldn’t count how many we’d met, but over the course of the two days he was admitted, at least 30 people personally evaluated, administered, and performed multiple tests and procedures for my son. This constant, direct caring helped us calm our thoughts. They worked together and kept us updated on everything throughout the stay. Best of all, they were able to determine what was the main problem that brought us to them, which meant they could send us home with a treatment plan!
We have kept in touch with the senior physician and are pleased with the advice Ronan has received under his care. The immediate response from Dr. M. and his active commitment helped us to stay on the right path.
As I drove to this recent appointment, I pondered the problems Ronan had that brought us to see this extraordinary doctor. They existed long before Ronan ended up in the children’s hospital emergency room. Ironically, we had booked an existing appointment at his office for the next month, but we were blessed not to have to wait for it. Dr. M. could handle the acute problems, and he wanted to start treating the chronic problems that no one else was bothering about. We were speechless. When we found our voices, we said: yes, of course, please. Please help us to help our son.
Doctors we turned to years ago brushed aside all stomach problems, even though gastrointestinal symptoms and easy-to-treat diagnoses were more than obvious. I’ll never forget the time when a specialist in question told me he didn’t know why Ronan had problems with pooping. Children with more serious problems received expert attention from this doctor and his team. We had hoped for the same, but after 2 appointments we came to a dead end. At the sink, this doctor washed his hands after examining Ronan when he literally washed our hands when he said, “It’s part of autism. Talk to the autism doctor about it. ”
I indicated, “But … it’s a poop problem … can’t you address that?”
No, the GI doctor couldn’t.
And no, the GI doctor wouldn’t.
Then he left us.
After this failed attempt, I tried to work with another doctor in a large GI clinic. We did not come to see the carers, as I had wished, but got an appointment with a resident. Promised that she would be just as professional as the “expert”, I agreed to drive the two hours to her.
After explaining and offering as much medical history as possible that Miralax, the drug of choice at the time, was not working for my son, this doctor said she could help. Oh thank the Lord! I thought because we really need help. Then the young doctor went excitedly to a cupboard and pulled out a poster. It had an enlarged view of the intestine with the words MEGA COLON on top. Other words such as impaction and constipation were also listed. I gave myself a memorized definition of these gastrointestinal problems and politely said to her, “Yes, I know what they are,” I began, “and they are exactly what I just described to you.”
“OH!” Even more excited, she said, “Then we’ll get him to try Miralax.”
Amazed, I said, “But I just told you that he didn’t respond and that we tried several times. It made the problem even worse, ”I explained.
“Oh,” replied the young doctor much less enthusiastically. “Well, if you don’t want to use it anymore, I can’t offer you anything else.”
I started: “… you have been highly recommended. I’ve heard you do tests, such as motility tests, and some have said you start doing things with pill cameras. Could my son be a candidate for further tests? “
“No. I can only offer you Miralax,” she said.
“He won’t do that again. I told you it didn’t work, ”I replied as I started to pack our things. “Can I speak to one of the other doctors if you can’t help us?” She didn’t think. They wouldn’t do anything but the Miralax, either. She told me we had to try this first. Again. Although it didn’t work.
I can usually tell when an appointment is going in the wrong direction. I was stunned that this highly recommended clinic focused on autism and used it almost like an excuse.
“Well, it’s probably autism causing it …” the young doctor began.
I interrupted her, “You can’t say that unless you take the effort to look deeper,” and then we walked up to her.
It is true that some GI problems can accompany a diagnosis of autism, but these problems should and can be treated independently of a diagnosis of autism. Had this been a priority for doctors who saw Ronan after those first disappointing encounters, things Ronan was struggling with may not have gotten worse.
But they did.
And he still has some of it.
That’s why we have people like Dr. M. in our back pocket. He is fast. He’s helpful. He is nice. He is able to see that there are severe disabilities and other serious medical complications. But he also sees that his expertise can address, treat, and even improve some of the lingering gastrointestinal problems.
Ronan has definitely made progress since that terrible day in 2019. Dr. M. took note of this when we both remembered how frightening that encounter in the emergency room was. It was awful. However, I was overjoyed when he said, “Mom, Dad, you’re doing great! From a nutritional point of view, you should keep doing what you’re doing. ”As much as I don’t want to puree Ronan’s meals because of his GI and swallowing problems, let’s keep doing it. He is still unable to eat on his own or use the toilet on his own. But we have a team that has given us access to consumables and useful suggestions that we can try. At every appointment since that really bad day, Dr. M and his team ready to exceed our expectations to help us.
“Is there anything else I can do for you? Do you need refills so I can order something or sign paperwork? I can do that today or later, if you think of something… ”How refreshing to be welcomed with open arms in a medical facility and to be looked after more than I expected.
Times are tough right now for so many people. It may be tough on this doctor, but he didn’t let the outside world influence or bother him in how he treated me or my child. After we returned home, I thanked God for the people like Dr. M., who do everything to build people up instead of tearing them down. We don’t have to go back to the clinic for another 6 months, but I will be excited to see how much more progress Ronan can make by then. I also look forward to sharing this information with a doctor who truly cares for my son and others like him.
Cathy Jameson is co-editor for Age of Autism.
