sreese68 Posted July 26, 2017 Report Share Posted July 26, 2017 UPDATE: We're looking into deferring for a semester or year. She's talking to her adviser tomorrow. The comments here helped give us a gentle nudge in that direction, and I appreciate it. ORIGINAL: My daughter is starting her freshman year at college next month. We discovered two weeks ago that her fatigue is due to dysautonomia. We did a poor man's tilt table test at home, and by 5 minutes standing her BP was 61/42 and her pulse was 139. She had to lie down because she was about to pass out. She'll be seeing a cardiologist August 22 for her first visit, but she moves into her dorm 3 days later before any testing can be done. We're going to contact the university to ask about disability accommodations, but I'm not sure what all to try to get. It's a huge campus, and I'm hoping they have a shuttle or something to get her to class until the heat goes down in October (Texas), and she's able to increase her endurance with PT and exercise. She's only signed up for 12 hours, but I know she may need to get a reduced course load. Anything else I'm not thinking of? Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted July 26, 2017 Report Share Posted July 26, 2017 POTS is often worse in the mornings. She may have difficulty with morning classes. Quote Link to comment Share on other sites More sharing options...
BuffRockChick Posted July 27, 2017 Report Share Posted July 27, 2017 Seating preference is easy accommodation that helps. Depending on her courseload, not standing may need to be specified. I had a chem lab that was standing - I couldn't function, had to withdraw. I had an art class and couldn't stand at an easel. Instructor was flexible to let me sit on the floor, but I will get it in writing as an accommodation next time I enroll. I'm also going to request separate testing room so that I can lie down for tests. Check if any of her classes have food/drink restrictions too. What about for dorm life though? Can she shower? Does she need a shower chair? Quote Link to comment Share on other sites More sharing options...
p8d Posted July 27, 2017 Report Share Posted July 27, 2017 Each university should have an accessibility office. You could contact them now to find out what sort of documentation she will need and what services they offer. She should also see each professor and teaching assistant as soon as possible and explain her diagnosis, issues and measures she may need to take such as sitting or laying down suddenly. I was a professor before I got sick and was happy to assist however needed. Of course that doesn't mean all professors so accommodating. That's why the accessibility office is vital, they document everything and are aware of all services available on campus. I used to have a shocking number of grandparents die right at finals time, every semester LOL. It gets some people cynical, especially with a disease no one knows about she may have some simply not believe her. She should request a prescription for compression stockings from either her PCP or the cardiologist. The PCP would help her get fitted and receive them before she goes. Be sure to get the device that helps put them on. Juzo offers tie dye and colored ones that are much better looking than the beige ones. They help a lot with walking and standing. Of course lots of BIG water bottles and salt. Quote Link to comment Share on other sites More sharing options...
Sam1 Posted July 28, 2017 Report Share Posted July 28, 2017 Every school is different, you need to talk to their disability coordinator. I have issues sitting at the desk doing homework almost daily and the only thing that helps is to get up and move around a bit & prop my legs up on the desk (when working too). Even with compression socks, I still have to elevate, or 10-15 minutes in I start feeling so uneasy it's impossible to concentrate. Quote Link to comment Share on other sites More sharing options...
sreese68 Posted July 30, 2017 Author Report Share Posted July 30, 2017 Thank you to everyone for the responses! I'm taking notes and will be calling the university Monday. I bought my daughter some compression socks that haven't arrived yet. She's very sensory sensitive, so I'm not sure she'll be able to tolerate them. Also, I wasn't sure if the help they'd give would be canceled out by making her hot wearing them when it's 90 degrees outside. For dorm life, she's able to shower. I think she may need a tiny pedals-only, under-desk exercise option vs her full-size recumbent bike, though. I wish she were up to calling the university herself, but she seems to be having a medication reaction that started yesterday. She's been on buspirone and had just increased citalopram a couple of weeks ago, so she's now feeling the med change. The doctor we talked to agreed that tapering off the buspirone was a good idea. I just hope she's one that won't get withdrawal problems. And that her dysautonomia symptoms won't get worse. Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted July 30, 2017 Report Share Posted July 30, 2017 I hate to say it, but she may need to defer enrollment until she is stabilized on meds. You may need to discuss the deadline for this decision with the university. I know that isn't what anybody wants, but it is hard to dig yourself out of a hole when you are healthy. It is impossible when you are sick. I got to that point when I was in college. It was horrible to watch my friends succeed and know how hard I was trying, but still not able to do it. Even when she does find the right combination of meds, she is still going to have a more difficult time than her friends. I don't mean to sound negative. Having to withdraw late into the semester wastes money and can impact her transcripts. My GPA took a permanent hit from some of my episodes. I hope she gets into a good routine and finds a way to handle it. Kim Quote Link to comment Share on other sites More sharing options...
Lily Posted July 30, 2017 Report Share Posted July 30, 2017 Another professor here. The disability office will probably give her a letter to present to professors that details all the required reasonable accommodations. Present the letter on the first day of class, or make an appointment to talk about it, or go to office hours the first week. Professors will be more or less sympathetic, but they must do what is in the letter. It might help to also bring a short article that explains POTS, as professor is likely to have many balls in the air and might not have time for a lengthy meeting right then. Quote Link to comment Share on other sites More sharing options...
p8d Posted July 31, 2017 Report Share Posted July 31, 2017 Many of us do better with thigh high or full compression type panty hose (can't remember what the word is) than just socks. The heat is a problem. If you wear them it's uncomfortable, if you don't you have increased symptoms or faint. It is worth considering postponing for a semester until she is stabilized. Pulling a GPA back up is difficult and she will likely have increased symptoms with the stress of the change so starting stable will help a lot. Just my $.02. Quote Link to comment Share on other sites More sharing options...
sreese68 Posted July 31, 2017 Author Report Share Posted July 31, 2017 Copied from above: UPDATE: We're looking into deferring for a semester or year. She's talking to her adviser tomorrow. The comments here helped give us a gentle nudge in that direction, and I appreciate it. I hope to get her on the board and posting her own questions at some point, but she's not feeling up to it right now. Quote Link to comment Share on other sites More sharing options...
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