<p>What issues did /does your child need to deal with at school if they have a chronic illness. Do colleges make single rooms available? Has anyone faced this issue- if so how did you deal with it? Did you discuss the illness with the school prior to enrolling? Any advise?</p>
<p>I think it would depend on the level of medical support needed. I think I'd would start with making sure the colleges that the student is applying to are near the kind of medical services that they are going to need.<br>
I know that UC Berkeley has been known for meeting the needs of students who use wheelchairs, for example, and provides accessible rooms and bathrooms as a matter of course.</p>
<p>It depends very much on the disability and the services/support required. I'd say any school will provide a single, but how hard will your child need to prove that he needs a single? Will other students have singles, or will he be "that kid" in a single among a hall of doubles? Think about whether academic accommodations will need to be made, such as missing classes (what about those with mandatory attendance? pop quizzes?), or time constraints on tests (getting sick or suffering an attack during the test). What about special dietary needs? Will the student be able to eat safely, healthily, and as needed in the campus dining hall? Does he need to be near a good hospital, or is finding a good local doctor enough? How can he get to doctor's appointments? What if there is an emergency? How will you--the parent--be contacted? Is this the kind of situation where there is the possibility that you would need to be at your child's side almost immediately in the case of an emergency? Is his mobility impaired? Does he use a wheelchair or walker or crutches? What's the campus like? Lots of stairs or hills or uneven ground? Is there ice in the winter? Is needed medicine available at the nearest pharmacy, or would your child have to travel to pick up meds (such as with certain narcotic painkillers or with rare medications)? Does stress impact his illness or condition? </p>
<p>Anyway, there are obviously many, many issues to consider. You and your child should without a doubt research all of these issues and more to your satisfaction before enrolling. You don't want to leave this to chance.</p>
<p>As an Rn that cares for chronically ill teens, I frequently write letters to colleges to help obtain accomodations (typically single rooms, diet adjustments) for my patients in college. Prior to application, it might make some sense to contact the college's disability support office to find our what might need to be done to get any help that is needed. I do think however, it is best to make these requests after one has decided on which college will be attended. I have never had any problem getting accomodations for any of my patients.</p>
<p>I would also think seriously about how much you really do need a single room---will it be isolating, will you feel left out of the general flow of dorm life.
Many of my patients choose not to have any special accomodations for this very reason.</p>
<p>Plan ahead--if you will be far from your doctors who know you best, get a referral to a local specialist and make an appointment for the first month or so of school. That will establish a relationship so if you get sick you can get the help you need quickly. How will you get your medication? How will you keep in contact with your clinicians at home? I find that email works really well for my college students. They contact me that way for prescription refills, intercurrent illnesses, how they are feeling etc</p>
<p>With the patients I follow, stress does exacerbate their illness, so I give them anticipatory guidance about this--take better care of yourself at the beginning of school, midterms, final exams. Get your rest, eat well, don't party</p>
<p>Like momof2sons, as a health care provider, I have worked with chronically ill teens in college. Her comments are right on. Typically the students I have worked with do not disclose to the college until after acceptance. However, that does not mean they haven't carefully explored services. In the New England area, some students have run into challenges with public schools that - had limited health services and the college safety officers could not drive students to the hospital/doctors office for minor emergencies. The student had to figure out a way to get to the hospital. These two issues, in my experience, have been less of at issue at small LACs.</p>
<p>I am also the parent of a HS senior with a chronic illness. After a discussion with my child of the realities that colleges stresses may/may not have on her illness, she has decided to limit her college search to instate schools that are driving distance to our home. I have researched the local physicians (at each of her college choices) that treat her illness and, when her final decision is made, will have her current specialist give us recommendations from the list. We will meet with the chosen new local specialist before college starts so that she establishes a relationship (and knows where they are). She was not planning on asking for accommodations at this time, but we will speak with the college disabilities office to know what her options are. We are currently discussing the possibility of access to a private bathroom as opposed to sharing with other students. There are social negatives to the isolation but if she has to share there could be other problems. Missing classes and/or tests is also a real possibility and we will need to find out how this is handled at the college level when a student is ill.</p>
<p>Accommodations are not necessarily conspicuous or isolating. It depends on the exact accommodation and the campus.</p>
<p>One of the most common accommodations is air conditioning (often, this means that the college supplies a window air conditioner in a dorm that is otherwise not air conditioned) for a student with allergies. Roommates LOVE people who need this accommodation.</p>
<p>The need for a single would not be conspicuous on a campus that has many singles. My daughter is a freshman at a university where one-third of the freshmen live in singles, mostly by choice. If your child was there and needed a single for medical reasons, nobody would be aware of it. And students living in singles do not have to feel isolated. All they need to do is keep their doors open.</p>
<p>I can see the merits in staying near home for continuity of medical care for some conditions. If the condition is one that doesn't tend to involve emergencies but does involve complex care, the student might want to rely mostly on the doctors he or she has been seeing all along, coming home when necessary for appointments, rather than establishing relationships with new specialists in the college community. My son, who has some (not too serious) health issues, attends a college less than an hour from home and has always handled things this way, usually without having to miss any classes.</p>
<p>I am living through freshman year with D who has a major chronic pain disorder. She is far away, but we carefully considered easy access (in our case a 1-1/2 hr nonstop flight) and cost (we've already had to make 2 unplanned trips). In early August we weren't sure she was going to be able to go to school and then again the first week of class she had a major health crisis that could only be worked through with a parent to help her. We too researched medical care and the fact that there is a major hospital on campus helps ease our minds regarding any real emergencies.</p>
<p>As far as disability qualification, we didn't talk to the U until after she was admitted, but before scholarship consideration. She still got a great scholarship even though they knew of her limitations. She lived with her illness throughout high school and if the disability entered the equation at all, I think her high school record spoke for itself.</p>
<p>In our case, D has a private room but is on a hall of private rooms. I think picking a place where private rooms are readily available makes this much less stigmatizing. At either state U she seriously considered this would have been very different. As it is, she still faced noise issues -- I can't even imagine what it would be like for her to have a roommate. We also felt it would be very unfair to force someone else to live with the debilitating illness of a stranger.</p>
<p>All said, you know your child best and have to do what everyone is comfortable with. We found it very helpful to have frank and open discussions along the way. When we were making a final decision as to whether she needed to take a year off, we involved her psychologist (an important asset in dealing with a child with chronic illness) and had a joint session where we basically came up with a contract with our D regarding certain things (i.e., no drinking, it could kill you with the meds you're on).</p>
<p>Here's a link I just recently found <a href="http://www.pediatricnetwork.org/independence/index.htm%5B/url%5D">http://www.pediatricnetwork.org/independence/index.htm</a>
that has some good articles. The website deals with some specific disorders, but the advice is somewhat generic when it comes to the decision making process.</p>
<p>Not to get personal or anything but I am wondering what types of chronic illnesses everyone's children have? </p>
<p>I am asking this because my D has been sick for almost a year and we are FIGHTING to get a diagnosis. She is a senior this year and can barely function at this point. She was negative on a Lyme Titer and we cannot get her into a Pediatric Rheumatologist until Halloween (3 hours away was the closest we could get without a referral from our Ped who refuses, long story). After talking to an Infectious Diseases Dr's nurse and she consulted w/ him they said a Rheumatologist was the best route as her history for the last year (faxed to them by me) could be anything from Lyme to Lupus to Chronic Fatigue. She has managed to keep her grades high but bc of the severe exhaustion has had to cut down on activities and I am worried this will effect her chances in school and for scholarships. How do you tell schools that she is chronically ill to a detrement without a diagnosis? Now it is app time and this is making it worse.</p>
<p>We have actually operated only with a very fuzzy diagnosis. D could be classified as having fibromyalgia (and we headed to a special clinic for that in December), Chronic Myofascial Pain Syndrome, or posibly a muscle disorder. D had leukemia as a young child and some docs think her pain is tied into that some how. We just got to the pt where the label doesn't really matter. The literature reflects that children suffering from pain -- espcially when there is no objective dignosis (what you're going through now) are among the worst served patients in our medical system.</p>
<p>As far as diagnosis and disability services, we just had her doctor call it a chronic pain disorder and give the details of her problems. The school never asked for anything more. </p>
<p>MomOf3Stars -- good luck with the upcoming appt. Feel free to PM me if you have any questions you don't want to post more generally. Along with D's chronic illness and prior cancer, D2 spent several years dealing with pain from an inflammatory disorder so I can sympathize.</p>
<p>Hmmm. We are in the process of getting some kind of diagnosis for my D, and it's good to know that you can 'operate with a fuzzy diagnosis.' Hers might be fuzzy for awhile. She may have a seizure disorder, but the testing has not come back yet. She previously has gotten accomodations for a vision issue, but that wouldn't impact dorm stuff. I'll be watching this thread closely!</p>
<p>The young people I work with on transitioning to college have chronic gastrointestinal conditions: Crohn's disease, ulcerative colitis, celiac disease,
liver transplants, chronic viral hepatisi</p>
<p>Some need accomodations, some don't. Some need to make a change mid-year depending on how they are doing. We have a conversation about what works best, even some of my patients with horrible chronic diarrhea do not want a single, while some do, so we work together.</p>
<p>We send our mnay of our patients across country to school and they do beautifully as long as there is a plan in place on how to deal with exacerabations of their disease. We are able to even set up intravenous infusions far away from their home base if that is indicated for their care.</p>
<p>As I clinician, I feel so proud of my patients when they transition to college and take responsibity for their own care.</p>
<p>MomOf3Stars--
It took from high school until sophomore year of college to get a diagnoses of my S's chronic kidney disease. It was a clinician at his college clinic who finally steered us in the right direction. Do not give up or lose hope--someone will figure out your D's symptoms.
My son had to take a semester off and come home and his university was wonderful in helping us through that process. He caught up with summer school. He lived in an apartment with friends off campus and had his own room. It was helpful to have roomates when he had an episode as they could get prescriptions filled or drive him to the clinic. Other than his roomates he did not want anyone to know of his condition.<br>
My son now has his chronic condition under good control and manages well with a full time job. I am confident that things will also work out well for your daughter but it is a scary time for a parent.</p>
<p>I am so thankful for this thread. Yes, this is a tough time. Especially as my D will be auditioning for music schools and we are afraid of her condition from day to day. I have never been so worried in my life and her Dad (who is usually not quick to worry about anything) is also quite concerned. </p>
<p>Frankly I am hoping for D to get into her dream school NYU, if only for the availability of great medical resources in NYC as well as rooms with private baths. I don't think a single will be what she needs but a private bathroom might be helpful.</p>
<p>Thanks everyone- have you broached this subject and concern with your child? My D is very excited about going away and while she has not brought up the subject I believe it is in the back of her mind. She suffers from undiagnosed gastrointestinial problems. The undiagnosed part is common, her mom deals with undiagnosed immune system issues.
The real issue will be understanding dorm mates. When you do not have a chronic illness it is difficult to understand the frustrations and difficulties of those that do.</p>
<p>I know two boys with gastrointestinal problems in college. One has severe IBS, and the other was diagnosed with Crohn's this summer. Both had roommates freshman year but private bathrooms in their room (which is the dorm set up). Most college students are mature enough to deal with a roommate with a chronic illness. There's a big difference between high school and college atmospheres regarding this stuff. A friend of mine at another school has Cystic Fibrosis and related complications, such as Diabetes, and is doing pretty well. She's several states from home, but there's a major hospital on campus. I have a chronic illness that doesn't really impact my daily life (I have two, actually, but one's currently in remission). I didn't get a primary doctor at college since my condition is quite stable, but now I find myself with questions about my health and no one to ask (due to the transition from a pediatric provider), which is frustrating.</p>
<p>My kid was diagnosed with a chronic illness while in college. She has no special accomodations but, of course, it all depends on the illness and the severity of the illness. For example, someone with severe migraines really may need to be able to make an environment quiet and dark and someone with a different illness may have different needs. I think a lot of kids with chronic illnesses want to have the same experience as everyone else and they should. My kid did move off campus at this year so that, in part, she could better control her diet. Dining halls vary greatly from school to school and some are not as able to accomodate kids with dietary needs.</p>
<p>One of my friends in college was a student with a muscle disorder similar to MD. He used a motorized wheelchair (the first I'd ever seen) and tired easily. Students were very friendly, and even back in the 70's the college made quite a few adjustments for him -- he had priority in enrollment, and I think that they even moved some classes to different buildings because he couldn't get from point A to point B in a timely manner.</p>
<p>Kids are pretty adaptable. He was outgoing and friendly, and had no shortage of friends.</p>
<p>I have friends with kids with chronic illnesses. The diabetic only request to have a larger refrigerator than the school allowed so that she could keep her foods and meds. The one with Crohn's requested a room with a private bathroom, but she does have a roommate. Something about running down the hall when you are sick just doesn't work!</p>
<p>Most schools that I am aware of will have a preassignment for housing for those with needs. Usually the school wants proof from a doctor of the illness, but those with a real illness will not have trouble getting what they need.</p>
<p>I know of a school where the "best" dorm has hardwood floors and the other dorms have carpet. Kids were saying they has asthma or allergies to dust so they might be place in the dorm with hardwood floors. Now the school want documentation to prove the allergy as not every kid really had one. </p>
<p>My daughter has some needs due to migraines and food allergies, but nothing that requires a special needs room assignment. Of course she did try to figure out freshman year what she could ask for to get a better placement! We didn't ask and she still got the dorm she wanted, so all worked out.</p>
<p>We are planning to apply for the apartment-style housing at my D's school so that she only has to share a bathroom with one other person. The apartment dorms have 4 single bedrooms/2 Baths so that in the event of an emergency...there should be a toilet available. Upperclassman also have access to a limited number of 4 Bed/4Bath apartments in the same dorm but I don't know that is essential. We are not sure if we will need the doctor's note to get her into this dorm since it is available to Freshman and more expensive than the other campus dorms (not as desirable due to cost???).</p>