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ihatediabetes
@ihatediabetes

Posts: 187
Joined: Oct 04, 2016

Taking son to mayo this month

Posted by @ihatediabetes, Tue, Aug 28 10:12pm

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.

REPLY

Good morning @ihatediabetes I hope all goes well for you during your visit this time! I bet you have seen lots of changes in the 24 years you have been going to Mayo for your son!

I would inquire immediately upon your visit about gaining access to the patient portal, especially since you have already provided them with copies of your guardianship papers. It should make the visit process proceed a bit smoother for you.

That must have been quite a time having to walk for six hours! My wife went through a whole lot of tests over the years at Mayo, but never that one! I agree it must have been tiring and I bet in six hours you saw a whole lot of Rochester!

Best of luck with all your appointments for your son and I hope the results you get are good ones!

Strength, courage, and peace.

@IndianaScott

Good morning @ihatediabetes I hope all goes well for you during your visit this time! I bet you have seen lots of changes in the 24 years you have been going to Mayo for your son!

I would inquire immediately upon your visit about gaining access to the patient portal, especially since you have already provided them with copies of your guardianship papers. It should make the visit process proceed a bit smoother for you.

That must have been quite a time having to walk for six hours! My wife went through a whole lot of tests over the years at Mayo, but never that one! I agree it must have been tiring and I bet in six hours you saw a whole lot of Rochester!

Best of luck with all your appointments for your son and I hope the results you get are good ones!

Strength, courage, and peace.

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I can remember paper files that they dropped into chutes that moved the files between different departments. If there wasn't enough time they told you to carry the file. I remember getting a stack of cards for appointments. I remember watching my son's doctor dictate into his telephone. Now everything is different. It was also smaller before. There was no Gonda building. That was a huge change.

@IndianaScott

Good morning @ihatediabetes I hope all goes well for you during your visit this time! I bet you have seen lots of changes in the 24 years you have been going to Mayo for your son!

I would inquire immediately upon your visit about gaining access to the patient portal, especially since you have already provided them with copies of your guardianship papers. It should make the visit process proceed a bit smoother for you.

That must have been quite a time having to walk for six hours! My wife went through a whole lot of tests over the years at Mayo, but never that one! I agree it must have been tiring and I bet in six hours you saw a whole lot of Rochester!

Best of luck with all your appointments for your son and I hope the results you get are good ones!

Strength, courage, and peace.

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I am at Mayo Clinic ophthalmology with my son. We stayed at Kahler last night so we wouldn't be late. Its nice to be able to go to and from through the subway. I hope it goes ok. These appointments make me nervous.

Best of everything for you and your son today @ihatediabetes Thinking of you both!

The appointment went really well. My son actually had two doctors look at him. One ophthalmologist and one neuro ophthalmologist. They were talking to my son in friendly way so he didn't get scared. Then we went to take pictures of his optic nerves in both eyes. We ordered glasses from opticians there. So we go back in 4 months. They treat people like my son like rock stars. I think they are interested in unusual and rare cases. My son's genetic disorder is rather rare.

Chutes and files…oh my, how things have changed. Looks lil you've gotten really good advice already. Glad to hear the appt. went well!

Super news @ihatediabetes That is so wonderful and so very nice your son was treated so kindly! The Mayo folks certainly are great at patient-centered care! Cheers and safe travels home!

My son's genetic condition often causes strabismus. So the first doctor was looking for strabismus or misaligned eyes. Then he looked into his eyes and noticed something about optic nerves. So the doctor said that there are other doctors here that know more about optics nerves. That's why he went to get the neuro ophthalmologist. Then the doctors were both leaning over my son looking into his eyes. The first doctor was spinning a toy that flashed and sparkled so my son would look at it. It was kind of funny watching them playing with toys so my son the patient wouldn't get scared but just look at the toy. Then we went to another room and took all these pictures of my son's optic nerves. When we were leaving we stopped at the optician. She ordered my son eye glasses for nearsightedness. My son paid his $3 copay for glasses because he's on medical assistance for disabled people. She got it approved because I know my son's social security number and she found him in the system. So I am pretty happy how it went. But I don't know what's up with the optic nerves. The doctors said it could be like Down Syndrome where the eyes just look different but there's nothing wrong. So we have to go back in 3 to 4 months to see if anything changes with the optic nerves. So I think optic nerves are more important than possible strabismus. They didn't tell me anything about strabismus because they were so focused on the optic nerves. I guess I am just going to wait to see what happens with the before and after optic nerve pictures. I feel better that people are watching this. My son is getting excellent medical care. He also has a pediatric cardiologist that has been following my son for 24 years. All the Mayo doctors seem to know this pediatric cardiologist.

Lately I have been wondering why these doctors were so focused on my son's optic nerves. I don't know what it means if an optics nerve is swollen or doesn't look normal. They said it could be like Down Syndrome eyes. But they don't know. So I thought it was a nice appointment. But I don't even know if I am supposed to be worried.

@ihatediabetes

Lately I have been wondering why these doctors were so focused on my son's optic nerves. I don't know what it means if an optics nerve is swollen or doesn't look normal. They said it could be like Down Syndrome eyes. But they don't know. So I thought it was a nice appointment. But I don't even know if I am supposed to be worried.

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@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.

@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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