<p>I am happy to see a thread like this only because it can serve as a support for parents dealing with this issue. My D is a Freshman at a top 20 LAC and has suffered with chronic pain for 4 1/2 years - diagnosed 1 1/2 years ago as fibromyalgia. In addition to pain issues, she gets very little sleep. Following her acceptance (and nothing relating to her condition was mentioned in the application process), we met with the Director of the college's Access Services in May 2007 (with a doctor's letter) to discuss various accommodations (including central dorm location to classes, dining hall, library, bus stop and ability to type exams instead of handwrite them). Though my gut told me D would be better off with a single room, she wanted to have the roommate experience, so she didn't request a single (and singles are available to some Freshmen).</p>
<p>She entered college with a full year's worth of AP credits so she could take a lighter load of one less class per semester but has decided not to yet. She is now half way through the 1st semester and has had some difficult periods of pain flares (she has widespread pain every day) and has been exhausted from lack of sleep (she has a good roommate situation by the way). Just last week she felt she needed help and without our assistance went through the chain of command to meet with her Hall Advisor, the Director of Access Services and the Director of Res Life to see if she could change to a single room. I must say that the college has been extremely understanding and supportive and within a matter of days the change was made. There happened to be a vacant room next door (dumb luck or fate?) that they were saving for potential roommate issues and my D's roommate moved into that room a few days ago. My D said that she discussed the situation with her roommate before approaching the Hall Advisor and that her roommate was also understanding of the situation. So for the rest of the school year - my D will have a single room and we're hoping the change will make things a bit easier for her.</p>
<p>We got D a cane right before college started and it took her a few days to feel comfortable using it on campus -but now she uses it all the time. As a parent, it's been a tough transition to have her cope with all of this on her own - we were very involved with helping her manage this all through high school. We also worry that she takes her medication when she's supposed to and she continues to try new medications to try to relieve pain (none successful to date) and we're not there to observe side effects, etc. </p>
<p>D has said that her life has serious challenges but she has to cope with them and there isn't any other place she'd rather be than the college setting she's in. So sometimes I hold my breath and hope for the very best for her. Im working hard to try to worry less but thats easier said than done. She's our one and only so we went right from dropping off to college for the first time to empty nest. I get some comfort knowing that she's only 1 1/2 hours away if a major issue comes up. We also took the insurance policy that covers tuition, room and board for a mid semester withdrawal...just in case. I hope we never have to use it.</p>
<p>If anyone else with a child with fibro has had any luck with certain medications or treatments, I would be grateful to hear about your experiences via Private Message. And I wish all of you facing the issue of having a child in college with a chronic illness or condition the very best.</p>
<p>"I’m working hard to try to worry less – but that’s easier said than done."</p>
<p>Truer words...it also puts a different spin on the autonomy/separation issues. While most kids are busy separating, parents of a kid with an illness may find themselves trying to tell from 3,000 miles away if symptoms are serious enough to warrant a trip to an ER, and other such situations. It can complicate the separation process. Sometimes, a medical crisis is really a crisis and a parent has to be more of a parent than they might have to be to a healthy kid. Sometimes you might have to nag about things like "Make sure the lab is on our plan, make sure you get the flu shot, etc." where you would never have a conversation like that with a healthy kid. On the other hand, a lot of these kids are incredibly competent and learn to handle so much on their own that it's pretty darn impressive. It's hard on mom and dad though to worry.</p>
<p>mimk6-
I hear you! My daughter does not have a chronic illness, but does have a life threatening food allergy as well as some GI issues. I have been on the receiving end of the phone when my daughter is in a panic as she isn't really sure she is having a reaction or not. It is hard to give direction when I am thousands of miles away and can't see her. She has managed well (and I am more relaxed) but it is still hard. </p>
<p>I am not trying to educated the directors of her abroad program in Spain concerning her needs while there. I think I made them worried about having my daughter with them without meaning to. I just wanted to make sure they understood the seriousness of her allergy and what precaution her host family would need to take. I am hoping the family will speak English so that I could communicate with them in an emergency, although the program directors and faculty all speak English so I will have people I can speak to if necessary.</p>
<p>A friend's daughter developed severe symptoms after her HS was renovated and expanded. Her mother is sure the symptoms were related to glues or something used in the building project, but never figured out what to do about it. She limped through HS and feels a lot better in college.</p>
<p>D, my hs senior with a chronic illness, also is anaphylactic to peanut(s). She is so allergic, our physician told her/us that she would have a maximum of about 20 minutes to get to a hospital should she ever ingest Peanut (even minute amounts). She has spent her entire life within arm's length of an Epipen and liquid Benadryl. It is tough to stop hovering when you have a child like this but I believe, that at this stage of her life, she will be able to look out for herself. She knows that she can never eat anything that she cannot verify the ingredients of.</p>
<p>Well, I was that kid in college with a chronic illness, and I did manage. Boy, I am hitting my head just thinking about the accomdation I should have asked for.</p>
<p>My heart goes out to all of you who have children with health issues who are far away. seiclan -- that must have been very frightening at first. </p>
<p>At least all these kids have loving, caring parents who are willing to let them master life on their own. Brava and bravo!</p>
<p>It's sort of funny how people view things too. My D calls almost everyday just to chat. I guess when you've dealt with serious illness you often become closer to your parents. I can always tell the second I hear her voice whether it's a good day -- or bad one. If the phone rings after 10:00 at night I know she's in pain. </p>
<p>So the funny thing is that some friends tell me how lucky I am that I get to talk to her so much. It would probably kill me but I would be so happy to go a week without hearing from her because that would mean things were great.</p>
<p>If anyone else's kid has a problem with sleeping because of their illness, my D finds books on tape are a great distraction from her pain and from the noise outside. I think one of her Christmas gifts is going to be for a books-on-tape Netflix type subscription. With any sort of pain, distraction is a good thing and her books give her that.</p>
<p>When I was on the phone with her today though, someone knocked on the door. The girl had stayed up late studying and didn't feel well so she knocked on D's door. Her hall mates know her situation and she said they already tend to come to her when they need empathy or tylenol or a ginger ale or a band aide.</p>
<p>A child with a chronic illness is a terrible thing and I wouldn't wish it on any family, but as collegex5 points out there are some silver linings. My S became more empathetic and patient after going through his own chronic illness and the long process brought us even closer as a family. My S knows that all his family members offered to be organ donors (not necessary, thank God) and that he is surrounded by love.</p>
<p>When my Mom dealt with chronic pain we found that heated blankets helped her.</p>
<p>My daughter has a chronic illness (rheumatoid arthritis), as well as what is shaping up to likely be neurocardiogenic syndrome (a few more tests to go over winter break for a less-fuzzy diagnosis). My daughter was very upfront about her RA during the application process, in part because she did not want to go to a school which was unwilling/unable to work with her. She spoke at length with the chair of the music department at her school right after her audition, and he assured her (even before her acceptance into the music program) that they would be willing to accomodate her needs as they arose.</p>
<p>She did not initially request any accomodations, but second quarter last year, she did seek a waiver on fulfilling the piano requirement for her music major. She found that after only 30 minutes of practice, her hands were swelling significantly. She approached the music department chair, and he immediately waived the requirement, with no questions asked. In the spring, she sought a housing accomodation, ensuring that she could be on the first floor of a dorm; after a year of living on the third floor of a dorm, she wanted to avoid stairs and the strain on her knees. She didn't end up needing the help of the housing office to get a first floor room, but after she got into the dorm she wanted, they did contact her to see if that was where she really wanted to be. They offered to make any room on campus available, but she was quite happy with her placement.</p>
<p>My daughter mostly keeps quiet about her RA, but she has learned to advocate for herself whenever necessary. And she does work to quell any misinformation she hears. Last year, an article was printed in a campus publication which clearly confused osteo- and rheumatoid arthritis. My daughter wrote a polite, but firm, reply to that article, pointing out the misinformation and what a disservice it did to people who suffered from this debilitating disease.</p>
<p>I think her biggest frustration is that her peers generally have little to no understanding of what she experiences. This is not to say they lack empathy, but my daughter does get a bit tired of hearing well-meaning acquaintances express that "they know what she is feeling; their joints always ache when it rains." My daughter would love to have joints that merely ache, but she also knows these comments are intended to be kind and supportive, so she just smiles and goes along with it.</p>
<p>Though thankfully I have no chronic pain, I did have many painful complications after having basic dental surgery this summer, and it was a very interesting experience. Let's just say I was on 4 hourly doses of Percocet for weeks and then worked my way down to Vicodin, which I actually had to take to college with me. I've been told I have a high pain tolerance all my life, but the pain meds didn't even touch this--I couldn't always tell whether or not the meds made a difference. (That's due, in part, to the fact that I was experiencing a lot of "deep pain" that the brain can't interpret, so pain meds don't help much.) I was in so much pain I couldn't concentrate on the TV, didn't have the energy to leave the bed/couch, etc. Anyway, it was interesting to see how different people reacted. My parents were wonderful. My mom was supposed to go on a weekend trip that she looking forward to but canceled. My father, surprisingly, was kind and quiet and always willing to go get me anything I wanted. My diet was limited to about two food items, so whenever we ran out of one he'd go out and get it for me, even during a baseball game. :) When I was slightly better--still on Percocet but maybe every 6-hours, could walk for a few minutes at a time--I actually left for Eastern Europe for a family vacation. (I wouldn't recommend long plane trips in this condition, by the way.) We met my sister there, and she really lacked any sort of helpful empathy. Perhaps that was because she hadn't seen me through this for weeks, because she's normally much nicer and more supportive than I am, at least. I had to rest frequently, take naps during the day, and I was still in tremendous pain, and she told me that I had to stop complaining and basically buck up. Anyway, it was a very enlightening experience. I learned a lot. I wouldn't wish chronic pain on anyone, especially severe pain like what I was experiencing. At times I literally felt as if I were going to go crazy; I just couldn't handle such excruciating, unrelenting pain (even with powerful narcotics) for so long without relief. As I said, it was quite educational. I'm glad I went through that, in many ways.</p>
<p>I hate to learn of other posters' chronic illness issues with their children - but I have found the words in these posts (and several PMs -thank you!) to be a great deal of support. My D is fiercely independent and wants to manage her condition on her own now and we struggle a bit with this issue - though I view her independence as a positive character trait. I could do without the stubbornness at times!</p>
<p>Fibromyalgia/chronic pain is one of those "invisible illnesses" - you can't tell something is wrong by looking at the person (although my D's recent use of the cane has changed that). She discovered the following essay that she now uses to help explain her situation to others and after people read it, she has actually received spoons (albeit plastic ones from the dining hall!) from friends. She has been more upfront with her situation in a half semester in college than she was in 4 years of high school.</p>
<p>Thank you for that link. I sent it to my daughter's email. Although, most of the time when she is ill she does look very sick (severe anemia will do that to you) this is a good example of coping skills and is very well written as well. </p>
<p>The life threatening allergy to Peanut seems relatively a non issue now (although of course it is very very serious), since before puberty she was also anaphylactic to milk (whey and casein), eggs, berries.... When she outgrew the other food allergies (the gastroenterologist retested her so that she could be given a certain anesthetic that contained egg for her colonoscopy at age 12) we practically had a party! Apparently, many kids do outgrow even severe food allergies at puberty. Unfortunately, the Peanut one tends to be lifelong.</p>
<p>I am the parent of a (high school) child with a chronic illness. She has insulin dependent diabetes, and is required to give herself injections at least four times/day. (We never refer to her as just the " diabetic".) To be honest, our college worries regarding her medical condition will go way beyond the size of her dorm refrigerator! We are confident that she will be independent, but that certainly does not minimize our concerns.......</p>
<p>sokkermom-My friend with the diabetic child is very concerned about her daughter's well being as well as her life. This child has been insulin dependent for 14 years and is very independent, but that doesn't mean she doesn't receive help and guidance from her parents.</p>
<p>My comment about the size of the dorm refrigerator was in reference to those asking for accommodations as far as dorm rooms; this family didn't ask for a single room or anything special other than the fridge. Of course the school is aware of the student being diabetic and has been helpful, although the student really doesn't need any help.</p>
<p>Thanks for the clarification snowball. As you know, there can be many complications (some major, some minor) associated with diabetes. Every individual is different. We are just starting to see some issues develop as our child (teenager /adolescent) develops. Some are hormonal, others are stress related. Migraine headaches during low blood sugars have been a recent issue. In addition, D has experienced more low (and sporadic) blood sugars during intense exercise. </p>
<p>As parents, our concerns regarding her health will always be there, no matter where she goes to college. It is more the fear of the unknown, than the known at this point.</p>
<p>We have never referrred to her as a diabetic child. I think the term diabetic as an adjective has become obsolete to many families with children who have diabetes. She is a child that happens to have a chronic illness. Fortunately, she is also an academic and athletic child who is very good natured and somewhat independent. That said, she has always lived under our constant reminders regarding her health and well being. As with snowball's friend, college will add a whole new dimension to our worries regarding her health. :o</p>
<p>When D was first diagnosed at age 6, the parent support group was very helpful to us. I agree with the other poster who stated that such support and advice from other college parents with students with chronic illnesses in this thread is also helpful, if nothing else than for peace of mind. (for us, not her.)</p>
<p>Re diabetes: have you looked into getting a pump? It makes life a lot easier and eliminates shots, though you have to test a lot, so there are the fingerpokes multiple times daily. I certainly understand the anxiety -- hypoglycemia is always a possibility...and then there is hyperglycemia...After testing my kid every night in the middle of the night for 9 years, I found the idea of a school thousands of miles away a bit anxiety producing...but things seem to be going well. Summers away in the last two years before college did a lot to boost my confidence that it would work out ok. As to the refrigerator, sugar tablets work well and don't require refrigeration (though, of course, insulin does), so a small one, shared with the roommate, was adequate.</p>
<p>Thanks mamenyu. (I'm still hoping that D will go to college closer to home, but we will see. We have 2 more years to go...) It is helpful to hear the success stories of others.</p>
<p>We go to Joslin (Boston) at least twice a year, and they have tried to talk her in to the pump. She has been resistant because she has been very active in sports and is afraid it would be inconvenient and in the way. I also think that she feels that if she had a pump, it would draw more attention to the fact that she has diabetes. She really tries very hard to be a normal kid. So far, her control has been ok with the injections. (with the exception of the hormone problems...)</p>
<p>If she does start with a pump, I'd rather have her get used to it before college. However, the Doctors have told us that if she thinks she isn't ready for a pump, it's better to wait. They have changed to Lantus (long term insulin) and humalog on a sliding scale everytime she eats. That is working better.</p>
<p>D has been to overnight camps and school trips, but not for more than a week, and at least a phone call a day. I'm glad to hear the roommate is working out. I worry about that too. I think I would feel better with having someone else around rather than having her in a single, just in case.....</p>
<p>The pump has actually normalized my kid's life -- it looks like a pager and is easily concealed well enough...it has never been a social problem, but girls may have a harder time with these body-image issues. Some top athletes use it with great success; it allows you to lower the basal for specific time frames -- something you can't otherwise do.<br>
I found that there was tremendous growth in independence starting after 11th grade; I had always assumed local college was a given (we live in a college town), but by the end, I was pushing for the out-of-state choice because of the "fit." As some have remarked on this thread, it does bring you closer together to have to deal with a labor-intensive chronic illness, requires openness and candor.
As to the roommate -- I agree -- don't want the kid in a single. I also think it is important to tell the roommate about it, and about hypoglycemia, and to let the RA know and train the RA about glucagon (I hope that actually happened...).</p>