<p>After almost a month of doctor visits and tests, my daughter has received a preliminary diagnosis of lupus. I must stress that this is not a done deal; there are still a few more test results we're waiting on, but the rheumatologist is definitely leaning towards lupus. If that proves to be the case, we will have to be educating ourselves quite a bit, but in the meantime, it occurred to me that this might have some effect on my daughter's college search. She'd already decided, because of her photosensitivity, that southern colleges are probably not a good idea. Beyond that, I have no clear idea of what kinds of college-related questions/concerns might arise if the diagnosis is positive. Any thoughts...whether specific to lupus or to any chronic condition?</p>
<p>my mamma has lupus</p>
<p>i think she will be fine at any college though, mezzomom, we kids can handle a lot! she will be tired, achy, etc. but she will survive im sure! just make sure there is a pharamacy and good rheumatologist near i suppose.</p>
<p>I really feel for you and your daughter. I am sure you are researching the condition and all of the ramifications of this diagnosis. I have several friends with lupus, and though they seem to be in good control of their condition--it is rarely discussed, it was mentioned in passing that they moved further south for the milder winters--not way south, but they did not want to deal with long, cold, cold winters. This is something you will want to discuss with a good rheumatologist, however.</p>
<p>Anytime you have a chronic condition or reason to need top medical care quickly, you need to pre-visit the health facilities and get a good doctor there who has a copy of your records. I have found that it is easier to copy the records and transport them myself. (I have a child who had a life threatening condition). You need to meet with the doctor and your child needs to know exactly what to do if a medical crisis or need arises. Also a visit to campus health facilities is in order with detailed info put into the student's file.</p>
<p>Actually, it is wise to go through this drill, even with healthy kids. We just don't do it because we depend on the the good health of youth, but, truly it is smart to know what steps to take if some medical problem occurs. Most kids have no idea what to do, and valuable time can be wasted in the event of an emergency. </p>
<p>In my opinion, it is a good idea to look for some colleges in a city that has major medical facilities that are comprehensive and of high repute. Also a good hospital should be nearby. I used to live in the Oakland area of Pittsburgh, and can tell you that the major colleges in Pittsburgh, Duquesne, Pitt, CMU along with a number of smaller schools are all within a very short distance of the UPMC, a top health resource. That sort of a set up would be ideal, I would think. </p>
<p>Hopefully, you will get more info soon. Please keep us posted. You and your D are in my prayers.</p>
<p>I did volunteer public relations work for the Lupus Foundation at one point - they are an excellent resource <a href="http://www.lupus.org%5B/url%5D">www.lupus.org</a>. They have a link of local chapters - you might see if there is one in your local area as well as near any potential college choices - would be a good source of support and referrals to medical specialists. I will add my prayers to Jamimom's for your daughter.</p>
<p>And thank you JAmimom for reminding us all that checking out the college medical facilities and having a plan for if something happens is a good idea even for healthy kids. I appreciate that thought, especially if my daughter does end up far away.</p>
<p>It's also wise to question your college kids about ANY visits to the college health center they may have made. I am still very upset that my son had some issues that were just ignored by his college health center that could have cost him his kidney. As an athlete, he is used to discomfort, and he would get pains that he mentioned to the trainers and to the nurse practitioners that staff the health center. I never got wind of the issue which went on for over a year. The way we found out is when he got into a car accident this summer, and was checked out for internal injuries. He was had surgery and things are fine now, but I shudder to think of what could have happened and what the problem could have been.</p>
<p>I would definitely stick to a large metropolitan area to insure a variety of quality healthcare options, though I suppose a small city with a medical school and a teaching hospital would be okay, too.</p>
<p>I would also consider a school with a large teaching hospital or medical center, just for the availability of fast, good medical care should it be needed.Lupus can be serious .</p>
<p>One other thought. It is possible that your daughter will have a doctor at home, and a doctor at school- since lupus is characterized by a relapsing pattern. It would be helpful to get a name from the doctor at home for a colleague (rheumatologist) near where your daughter ends up- and a referral letter. Hopefully ancillary medical checks, such as with an ophthalmologist, can take place during breaks so you can lend practical support. Also, I would check into whether or not your insurance is accepted at the hospital close to your daughter's college. </p>
<p>I think if she were interested in a school and it wasn't near a teaching hospital, I would contact the Medical Director of the student health service and ask her/him what they think about the advisability of her attendance. If it is a "dream school" it might still be worth waiting until her disease "reveals" itself a bit. </p>
<p>Best of luck to your daughter.</p>
<p>Mezzomom, I don't have a lot of advice but wanted to tell you that I will be thinking of you and your daughter as you get help figuring out her diagnosis and plans for dealing with it. It must be difficult, on top of all this college stuff and future plans. Hang in there. Your plan to research it thoroughly and to get advice as well will bode well as you move forward. </p>
<p>All the best...
Susan</p>
<p>If you do look at southern colleges, Emory has a good hospital in the middle of the campus. At Duke the hospital is nearby, with a shuttle bus from campus to hospital I believe.</p>
<p>I think that the hospital at Duke is right ON the campus, from what I remember from visiting. I may be wrong on this, though.</p>
<p>My son is currently a college sophomore and he has cystic fibrosis. The best advice we got was to make sure that we documented his illness with the coordinator for students with disabilities services on campus. If the college student should experience an exacerbation of their illness and it is documented with the administration beforehand, it makes it a lot easier to arrange make-up assignments and exams with professors. When our son had to be hospitalized last year, it was the disabilities coordinator who contacted all appropriate faculty and made arrangements so that he would not be penalized for his absences. The disabilities coordinator at our son's college has been a great assistance to us, and a real emotional support for him. Don't send a chronically ill child to college without doing this!</p>
<p>Also, it is truly beneficial to have a first-rate medical facility within easy commuting distance. Good luck to you and your daughter!</p>
<p>Excellent, excellent advice Counselor! I wouldn't have thought about registering with the disabilities services department but for chronic illnesses it makes perfect sense.</p>
<p>Tons of good advice. Be sure you know the limitations and restrictions of your insurance coverage - the company may have a patient advocate or case manager who can be helpful. You may not be able to cover her throughout college, and you'll need to know what to do to get her covered, particularly if she's out of state.
Your child will eventually need to really educate herself about her illness (she may not be ready for that right now, if she's just been diagnosed) - lupus is unpredictable, and can present with so many different symptoms, she has to know herself what to be watchful for.
You are in my prayers - blessings.</p>
<p>One of my children was diagnosed with diabetes at age 8. He is at a college in a small city where there is an excellent hospital. His condition generally is easy to manage and his endocrinologist felt there was no need to have a second MD near college. On the other hand, we do have family near by who are able to help in an emergency. The advice about contacting the college disabilities office is excellent. My child did not want me to but when freshman housing was changed from a dorm with a cafeteria to one far from the cafeteria I called; however at that late date they could not facilitate a change. Being in a dorm without a cafeteria worked out fine although I was nervous.
The students are allowed refrigerators in dorm rooms but not microwaves although there is one in every dorm in the lounge -- perhaps on another floor. Check out your insurance before hand and if your child is on Rx medicine, be sure to file Rxs at the local pharmacy in the beginning of the school year. We have done this every year and so far have had no probem having them filled there. We were at first reluctant to have this child go to school half way across the country -- needs to travel by plane. So far it's worked out well and if there were an emergency I could be there in a few hours cuz there is a major airport near there and not too far from our home. Good luck to you and your daughter.</p>
<p>Hi Mezzomom,
I have nothing new to add to this good advice, but want to tell you you will both be in my prayers. Amazing things can happen. My duaghter, who has an autoimmune disease, "somehow" ended up in the Philly area in college where she was amazingly referred to a doc at Penn who helped create the meds which were specifically designed for her illness. All the best to you as you begin to understand what lupus will mean in your lives.</p>
<p>I remember a thread by Candi a few months ago that discussed, aming other things, the problems between arranging for recurring medical needs via the student health service, the university hopsital, and/or local doctors. Perhaps someone could resurrect that one for more ideas.</p>
<p>Mezzomom,
I am sorry to hear about your daughter. I have lupus, so there are many things that came to mind when reading your post. Dorm selection will be important. Stairs are very difficult on the achy joints, and tiring. Really consider the size of the campus and how much walking on a daily basis will be required. A smaller school for this reason might be better. As others stated, the doctor will be very important, and depending on which medication she'll be on, she might have to be seen frequently, esp. for blood tests. When I'm stable, I go every 6 weeks. During flare-ups, it is more frequently, so keep that in mind. Also, some medication needs refridgeration, but most dorms allow that, or have easy access so that shouldn't be a problem, but just wanted to mention it. I have all my meds delivered by mail, and hopefully your insurance plan allows that, it is quite ideal. Stay positive, there are MANY different medications to help. Contact me if you'd like to discuss anything else, and good luck to you and your daughter.</p>
<p>I truly appreciate the suggestions of you all, but mostly I'm deeply touched by your kindness and prayers. I'm trying to find a place between burying my head in the sand altogether and assuming the final diagnosis will be positive...December 13th is the next visit to the doctor, and it can't come soon enough! </p>
<p>My daughter has been amazing me through all of this. She pulled out her anatomy book and read the two pages on lupus; a rather bleak recitation of every possible thing that could go wrong. When she was done, she just snapped the book shut and said, "That's enough of that." I asked her what she meant and she stated very firmly, "I may have lupus. I may not. But I'm not going to stop dreaming my dreams."</p>
<p>With that kind of spirit, I think she'll be fine, no matter what.</p>