Taking son to mayo this month

Posted by ihatediabetes @ihatediabetes, Aug 28, 2018

I am taking my son with developmental disability to mayo in September. I am getting text message reminders. That's new. He has ophthalmology appointment for strabismus consultation. Then he has medical genetics consultation for whatever else he needs. I am trying to catch my son up with his medical and dental needs. Last time we came down was in 2016 and we came down four times for scans and tests. They put a blood pressure monitor on my son's arm and told me to walk around for six hours. So we walked all around Rochester and visited the art center, public library, and ate a greasy hamburger in a famous place. Then we dropped blood pressure cuff in box and we left. Then we came back for diagnosis of hypertension and my son started meds. That was two years ago. Now we are coming back. I have no idea what will happen with ophthalmology. My son is 27 so this is my life as caregiver. I hope the tests are easy this time so we don't have to come back so many times or walk around for six hours. That's exhausting. Mayo does give my son excellent medical care. But it is stressful and exhausting to be the caregiver. I already came down once to bring my guardianship papers. I can't get patient portal access to my son's file unless I bring guardianship papers. So I can't even look up when his appointments are on portal. But I did get a print out when I brought in my paperwork. Plus I do get the new text message reminders. We've been coming to Mayo for 24 years.

Interested in more discussions like this? Go to the Caregivers Support Group.

@colleenyoung

@ihatediabetes, rather than be worried, I might suggest you ask questions on the patient portal. Ask them why they are being vigilant about the optic nerve and what it might indicate. Additionally, I would ask how you can help. What might you keep a look out for?
Getting a follow-up appointment in 3-4 months is also a good time to ask questions.

@frank, welcome back the Mayo Clinic Connect. Yes, a lot has changed since you were here last. Have a look around. Let me know if there is a group or discussion topic I can help you find.

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Hi I know we have to come back for more pictures in 3 or 4 months. Then they compare the pictures to see if anything has changed. The same thing is happening with my son's cardiovascular system because of his genetic syndrome. That's why my son has had a pediatric cardiologist since three years old. They are following him for life. So the eye doctors said they would follow my son's eyes. And its good that all his medical records are in the same place. Last time we were they put a blood pressure monitor on my son's arm and said to walk around for eight hours. Then they said he had hypertension and started him on meds. So I already do worry about my son's health. It's just now I might have to worry about his eyes in addition to his cardiovascular system. I'm also supposed to worry about calcium but I don't know how to do that. I do have a lot of stories and history at Mayo Clinic. This isn't my first rodeo. We are veterans.

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