Diagnostic Appointment Delayed

I made the appointment three months ago. I made it after a hard day where I realized that I needed guidance on how to help my teenage son shift into adulthood while managing his own particular mix of capabilities and disabilities. I needed a doctor to talk with him about the medicines he takes, so that my son is prepared to make rational decisions about those medicines rather than making reactionary decisions.

A month passed and things did not get easier. We ended up meeting with a general practitioner to adjust meds. I met with the school to adjust his schedule. I learned about programs that become available with a signed diagnosis letter. I was glad to be able to say “We already have an appointment scheduled.” We were struggling and muddling toward solutions, but I knew that an appointment was scheduled with a doctor I trust. I was willing to wait so I could see this particular doctor.

It was all lined up. The appointment was today. I could get the school form signed. I could get prescription refills. Howard went on the run to get the college kid from school. I arranged for my neighbor to pick up the elementary carpool. I’d cleared and defended the day. I didn’t know all the results that the appointment would bring. Maybe a new diagnosis. Maybe a process to switch medications. Maybe just affirmation that we were already doing all the things that were necessary. But at least I knew that I would no longer be waiting for an appointment. We would then be on the patient list rather than the New Patient list, which meant follow up phone calls and appointments would be handled far more expeditiously.

This morning I got a phone call. They had to reschedule. Next available appointment is January 5, twenty-five days from today. I get another month of muddling through and waiting for an appointment. I’m not mad at the doctor. He didn’t want to have stomach flu today. I’m certain he would much rather have spent his day meeting with me. Yet the cancellation of the appointment hit me hard. Today has been hard. Sometimes I don’t realize how much emotion I have riding on an event until the event is cancelled or changed.

I think this is one of the hardest aspects of mental illness. After making my way over the hurdle of admitting I needed professional help for my child, I had to wait. Then I had to talk about the appointment to school staff. Then I had to go explain to a general practitioner why I needed an interim prescription until I could see the psychiatrist. With the appointment moved, I had to have all of those conversations over again. I had to call the GP and say “Would you please write this letter that the school needs?” because my son can not afford to wait until January for the services. I had to ask the GP for a prescription extension so that we won’t run out before we have the chance to meet with the psychiatrist. Across the middle of this, our insurance will be switching over to a new plan on January 1st. This will probably be to our benefit, but it still requires me to adjust for the new company.

I have enough force of will and comprehension of what needs to be done that I can wade through all of that. I want to cry for the families who have no idea how to navigate to get mental health care and who don’t know what questions to ask at the schools to get help. It has been confusing and exhausting. Instead of exiting today with a new health partner and a new course, I am facing another month of stopgap measures. I don’t like stopgap measures.

So we do the only thing we can do, which is to keep facing each day and do the best we can. The good news is that something in the medicine switches, therapy, and schedule switches has been helping. Life is better for him now than it was two weeks ago. We’ll just keep on doing the things that seem to be working until we can have the diagnostic appointment that we need.

4 thoughts on “Diagnostic Appointment Delayed”

  1. I have found navigating the mental health system for my child to be so challenging. Just to find a child psychiatrist on our insurance I called over twenty offices. I now drive from Utah County to Murray. I really like the office I go to, but I wish my insurance had someone closer. It is hard to create your own road map. It’s not like having a baby, where there are a thousand books and websites that tell you how to do everything. Yes, you have to figure it out yourself, but at least there’s a guide for being pregnant and caring for a newborn. With all the parenting books I’ve read, it’s the actual figuring out the school system and the insurance/mental health care my child needs that is most challenging. I’m sorry your appointment was canceled.

    1. Our doctor is in Salt Lake, 45 minutes from our house. There is a serious shortage of mental health professionals in Utah. Part of the trouble with learning how to navigate mental health care for children is that those who have already walked the path are reluctant to speak up about it. I understand that reluctance. I feel it all the time. I always think carefully about what gets to be public and what needs to be private. I worry about things I blog rebounding in unpleasant ways for my kids. But I put it in my blog because at least it lets others know they’re not alone and it makes public some of the options I’ve found.

      Thank you for commenting. Parenting children who need mental healthcare is one of the hardest and loneliest things I’ve ever done. It’s lonely even though I have a husband who is right by my side and supportive. Even though I have friends who understand and listen.

  2. I don’t have the same situation that you do but I think I get a little how hard it is to do this. It’s so frustrating sometimes to always have to work the system. A lot of times it seems that it just gets harder as I have to fight again and again to get medications or programs or appointments scheduled. These are the days where I wish I could just hide my head in a blanket and disappear into a book instead of dealing with people all day. Best wishes.

  3. Sandra, I always appreciate your posts on this topic. It’s hard for me to talk about too. I sometimes feel paralyzed by the judgments I assume people make about my child–sometimes it’s all in my head, and other times it’s not. It is good to read other experiences and feel less alone.

    I have also been amazed at the shortage of mental health professionals here. You would think that in Utah County there would be more child psychiatrists who prescribe, but they are few and far between. At least on my insurance.

    Right now my child is in a stable place, but we fought a while to get here, and I think as he grows we will need to make frequent adjustments.

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