<p>I did not read all posts, but as a college instructor, I really appreciate it when my students share with me that they are diabetic. I have a young woman in class now that as it tattooed in her wrist. I want to do the right thing and do it as quickly as possible.</p>
<p>sbjdorlo: thanks for starting this thread - I also have a T1 son who was diagnosed last year so this is all fairly new for us. In addition to diabetes, ds also has some processing issues so he had to undergo additional testing at school before collegeboard approved the accommodations. I would suggest you get in touch with them asap as the process can take some time. If I remember correctly, I think you’re homeschooling so I don’t know if the process will take any additional time.</p>
<p>Thanks to all for sharing your experiences.</p>
<p>Thank you for this thread. My t1D is only in 10th, but she is already making noises about being interested in a college over 1000 miles away…</p>
<p>I hope you don’t mind me asking a tangentially related question – have any of your t1D kids done the SAT and/or AP exams without accommodations?</p>
<p>My t1D dd took an SAT-2 last year with no trouble. She will take two AP exams this spring with no accommodations. I’m concerned, but since we homeschool, finding a school that will give her the exams if we request accommodations would be a trick.</p>
<p>I would love to hear some success stories of kids who have done these tests without accommodations!</p>
<p>(Dd manages her D almost entirely by herself and is in amazing control, so I’m not concerned about the BS aspect but only about her having enough time to test during bathroom breaks.)</p>
<p>I have two very close friends with college kids who developed diabetes as children. While the pre-teen years were rocky both kids have done very well as teens. One boy. One girl. I know that the mom of the boy worries about alcohol and her son’s diabetes but both are far, far, far from home and doing well. Both kids played varsity sports and other than the normal things that come along with diabetes have done just fine. Both have spent days and nights with my kids so I have seen them both for extended periods of time in many environments. The boy used to arrive at our home with injector pens and granola bars and food supplies in tow although both now use a pump. Neither that I know of have had an emergency trip to ER since they were very young and I think I would have heard about that. Kids can be resilient especially after many, many years of living with the disease. But I suppose there are those that never come to terms with it and those are the ones that could worry me if I were in the mom’s shoes.</p>
<p>My son is a freshman in Missouri- we live in California. He was diagnosed when he was eight and he has pumped since he was 10. Someone mentioned the accommodations. You should absolutely get them- you don’t have to use them if you don’t want to. Remember that you want “Stop the Clock” accommodations, which means that if your child needs to stop to test his/her blood sugar and needs to address the blood sugar (like eat) the clock stops until the child is ready to resume testing. It also allows the clock to not begin unless your child is ready- so let’s say they are walking out the door and all of sudden their pump falls off (it happens!) they can take a deep breath and re-insert- the clock will not start. Also, SAT and ACT accommodations are different and ACT takes longer to receive and to get the grades when accommodations are provided, so prepare for that. The SAT includes a “test” section that is not graded. No one knows which section that is. The people with accommodations do not have that section so their SAT testing time is less. My son was always done much earlier than his peers and he could leave since accommodations allow you to take the test alone. Also, you need to have accommodations from the school in place in order to receive college board accommodations, so remember to get that in place. Later on when it comes to GREs, LSATs, etc. it is my understanding that they look to see if accommodations were provided on previous standardized tests so even if you don’t use them I think it is good to have- you only have to do it once.</p>
<p>We lucked out at school- the SHS doctor is an endocrinologist and has helped my son with his counts, made sure he gets an A1c every 3 months. So lucky! His counts were under control when he left and are still under control- maybe a little low but overall pretty good.</p>
<p>Supplies are a pain- I first thought I would do mail order prescriptions and I think he was ready to kill me when so much insulin showed up- too much to put in the shared mini fridge. So now he orders from SHS but I have to remind him.</p>
<p>Overall no issues (yet! keeping my fingers crossed!)</p>
<p>Oh, we did request accommodations for dorms- we had an option of rooms with attached bathrooms or traditional dorms with community bathrooms down the hall. We made an argument that he needed the attached bathrooms so he cold get up and deal with diabetes in the middle of the night. We also requested a roommate. For next year he does not want to use the accommodations (long story) and things have been so ok that we are going along with it but hoping for a roommate still!</p>
<p>Just another view on a single room vs. a roommate, and I have to say it really depends on your child. My D has a single room. She gets up often during the night, usually awoken from her CGM alarm. She then checks her BS; if low, eats, and then she stays awake until her BS is at safe levels. She would not want to subject a roommate to this. She is often up for over an hour in the middle of the night, and she needs light both to safely check her BS as well as to stay awake. Maybe it is because she tends to have quick BS swings, but she is up during the night quite often. This could potentially cause friction with a roommate. I don’t think there is a right answer that applies to everyone. It just depends on the person and their personal situation.</p>
<p>I think it would depend on the responsibility level of your child. I think there is going to be a time when you won’t be able to live in the same city as him or her, so I personally I don’t think that restricting your child to be close to home just because they are diabetic is a good idea.</p>
<p>My T1 son is going off to college in the fall and I have to admit, I’m a bit terrified. His A1cs are generally very good, but the thought of him being thousands of miles away without family is far from comforting.</p>
<p>I feel fortunate that the pediatric center he’s gone to for years offers high school seniors a one-day workshop in the spring on how to manage diabetes in college. You can bet that’s one workshop he won’t miss!</p>
<p>I think it’s helped that we’ve allowed him a lot of freedom over the years, with more every year. I remember talking with one parent of a T1 who never let their daughter go anywhere without them…and she was a freshman in high school. It’s scary to think about it, but I believe he’s ready.</p>
<p>He, too, received accommodations on all his standardized testing, but he never had to use it. My view is that you’re better safe than sorry. It’s a bit of a pain to get approved, but the peace of mind is well worth it.</p>
<p>My sister was also a T1 diabetic in the days before meters and pumps. I’m just thankful my son has the tools to take better care of himself…without us having to nag.</p>
<p>Such great tips and things to think about. I need to bookmark this thread somehow so I can refer to it often in the next several years.</p>
<p>I like the idea of my son’s friends carrying sugar.</p>
<p>Dumbo, you made a great point of why a single might be important. My son already has great trouble falling asleep and when he does go low during the night (either by us checking him or sometimes he wakes and feels it), he usually takes a while to go back to sleep. A roommate might get mighty annoyed.</p>
<p>My son’s A1C’s are always excellent (usually 6.0 or below, though last time, it was 6.5). He is having more freedom this year than ever before. He went to an amusement park 3 hours away without us and spend all day and night there and did just fine, though he didn’t check as often as he should. He’s been home alone for many hours and has done fine. I think he’s spent the night with friends and done ok (we always prep friends, though).</p>
<p>It’s just the day to day care and continuation of care: counting every carb isn’t his strength. He <em>never</em> changes his lancets. He would never keep track of his numbers on his log. More than a couple times, his pod expired while he was sleeping and he didn’t wake to the alarm. (And one time the alarm didn’t go off; fortunately, his BG “only” went into the mid 400s)</p>
<p>These daily things just take a lot of thought and when combined with his other issues, well…I am glad he’s only a freshman. :-)</p>
<p>Ok, my goal next week with my husband on vacation is to begin the process with college board. I have two other professionals to get reports from, as well. We’ll see what happens.</p>
<p>S1 was diagnosed with Type 1 when he was home last year for spring break. Sugar was 890, he was 115 lbs. and his stomach stopped working. Stayed in the hospital for 5 days, and 2 days later we brought him back to school 6 hours away. (We stayed for several days just to make sure.) This was one of the hardest things we ever did, sending a newly diagnosed 18 year old to handle this on his own. We did make sure that we established a relationship with a doctor by his school, and his university did have a hospital on campus. Unfortunately, because he was 18 (no longer a child, not really an adult, he didn’t have the education/support he might otherwise have. His last 6 weeks of school was hard on him, as he was much more interested in taking care of himself and researching his condition than schoolwork. Fortunately his professors were understanding about his missed work, and he ended up with As and Bs. He felt horrible right after his diagnosis and during the first half of summer as he could not sleep, already had some neuropathy, and I think was a little depressed. He got the pump in July and it really turned everything around for him. His only complaint that is he so so skinny there aren’t many “fat” places to put the infusion set. My husband and I went back and forth about whether he should go back to his u for his sophomore year as it is so far away from us, but it really wasn’t our choice. Unfortunately in October S1 ended up in the emergency room because his stomach sopped working causing dangerous lows and in the University hospital for almost a week (gastroparesis). One of us stayed with him during that time, but he was in good hands there. Although we almost pulled him out then, S1 said he wanted to stay. As a 19 year old man, it was his choice, although my husband and I worry every day. (So far, so good.)</p>
<p>My advice OP, see what 3 years brings. He knows what he has to do, and when he goes to school you do have to “let go” and let him take care of himself. Believe me, I know it is hard but you cannot always be there for him making sure he is doing the right thing. The only thing I would make sure is that there is a doctor and/or hospital close enough to the university if something goes wrong. This makes me feel a little better.</p>
<p>Oh my goodness, kjc, I cannot begin to imagine what you went through. 
I can’t imagine going back to school without the support and education that my son has received over the last 4 years. Each meeting brings us more info to manage. Your son is to be commended for his amazing performance at school and his desire to return to school despite the gravity of his illness. That is huge. You have raised a fine son.</p>
<p>Yes, my son is really skinny, too, and can only wear his pod in two places. He bleeds almost every time he changes it, which is why he wants to take a break.</p>
<p>Question: Isn’t there something our kids can sign that allows us to get medical info right away? What is it, the FERPA, or something like that? I want to be able to make medical decisions for all of my children, or at least be a part of the decision making team, even when they turn 18.</p>
<p>sbjdorlo, thank you for your kind message about my son. I’m glad he didn’t have to deal with T1 for a longer time, but sometimes I wish he was diagnosed when he was in high school so he would have had the education he needs to handle it. Besides the nutritionist and diabetic educator who spent maybe 2 hours with him at his hospital visits, he hasn’t had any further education. Thank goodness he has researched it himself. Unfortunately though because he is 18 I can’t find out medical information on him…I don’t know of any form to sign to get this, if you find out what it is, let me know. S1 had a medical test performed right before winter break and I still don’t know the results! (S1 hasn’t gotten around to calling the doctor, its so frustrating.) With regard to the pump, S1 has a medtronics and has about 4 places to insert it…believe it or not his favorite is his thighs. He tried his backside area once but he’s not fat enough there and the muscle just bent it!</p>
<p>Again, you have a couple of years to see how your son is doing. I’m lucky that my son wasn’t/isn’t a drinker or he might have really had problems last year. I am very lucky that my son is in walking distance to the hospital and to his doctors there at his U, this does make me feel alot better. (He actually walked with security to the ER last October.) I think this is the one thing I wouldn’t bend on when choosing a school for my T1 child.</p>
<p>^All I can say is wow. I can’t imagaine having to send my kid away right after diagnosis. I am sure it was very scary, and you are probably still catching up on sleep, lol. My D was diagnosed when she was 14 (also on vacation). As luck would have it, she had just finished studying juvenile diabetes in biology, so she was pretty educated from the start. I agree, it is nice having medical facilities close. Luckily, D hasn’t needed them, but I sleep better knowing a good hospital is a skip and a jump away. </p>
<p>This thread has had so many views…I hope more parents post on their experience with type 1 and college.</p>
<p>My daughter was 4 when diagnosed, and often says she is glad she was young because she does not know any other life.</p>
<p>When reading what everyone and their kids have gone through, I sometimes have a lot of trouble with the constant media attention to weight loss and lifestyle management for diabetes, without specifying type 2. Type 2 is no picnic either, but there is no understanding of type 1 out there. I have written magazines and papers and they often tell me that the editor won’t give them the space to explain the difference.</p>
<p>It must be tough dealing with later diagnoses. I have wonderful pump books, that I read and that helped me train my daughter over the years. I am not so sure she would read it herself at this age. </p>
<p>For skinny people on Medtronic Minimed pumps, we strongly recommend the Silhouette insertion, which goes in side ways. Joslin told my daughter that a long time ago and although she is skinny too, no problems.</p>
<p>Working with exercise or illness can be especially challenging. We have used glucagon for stomach bugs- a tip for anyone who hasn’t done that yet. Use 1/2 dose if someone is vomiting and low and can’t keep treatment down.</p>
<p>Good luck to everyone!</p>
<p>My Son is a junior in HS, diagnosed as a freshman. He is quite independent and manages his care well most of the time. He just spent two nights away with the high school golf team, we checked in via text and he was at 70 in the evening with 3 units IOB…I was nervous but he carbed up and went to bed…didn’t play the best golf of his life the next day but his levels were fine. </p>
<p>We are visiting colleges over spring break, some as far as 11 hours away, I am nervous but am trying not to show it as I’ve tried to convince myself that even if I was 1 hour away, we need a backup plan for getting him assistance until I can arrive. </p>
<p>I have spoken to several disability offices on college campus’, most are not open 24/7 so a hospital near by is important. I also think a roommate for him will be best, someone to be aware if he is in trouble and one less reason to feel “different” because of D. </p>
<p>My son is hoping to play golf in college, this gives me great “peace” of mind as the coaches/trainers/assistants are with the athletes most hours of the day. </p>
<p>He has worn a pump since June and loves it, although he too is thin and we have little real estate to play with. He typically wears his site on his stomach or thigh. He has a MM CGMS but never wears it as it is painful after a very short time. He is not interested in other less painful CGMS as he doesn’t want a 2nd piece of equipment to wear. I am thinking about seeing if he will use the CGMS at night to alarm him if he is low…might take some convincing. </p>
<p>Great courage and congrats to the young man diagnosed at 18, managing on his own!!! Very impressive. </p>
<p>There is a form that you can sign to maintain access to your student’s medical records, I signed one with my daughter. She had an allergic reaction to antibiotics after a spider bite the health center thought might be a brown recluse…the reaction gave her hives which of course caused the dreaded round circle around the bite, the doctor quickly called me to reassure me it was an allergic reaction and not a reaction from the bite itself…thank goodness. She was kept at the student health center over night and monitored for the next 10 days. The health center called me daily with updates (swelling up or down, hives gone, fever gone, etc.)It was very comforting as she had only been away 5 days and I sooooo wanted to rush to her aid.</p>
<p>I’m very glad my son was still in high school when he was diagnosed. I can’t imagine how stressful it would be for both parents and patient to be in college and dealing with all of this. It’s such a steep learning curve, so much to take in at once.</p>
<p>This thread is like visiting with friends – you all speak my language! :-)</p>
<p>My dh has had T1D for over 20 years (diagnosed at age 26). The funny thing is that as an adult his diabetes hasn’t been an issue. He just manages it on his own. Adults can eat during meetings, test when they want, etc.</p>
<p>Through my dd (16yo T1D) I am finding out that what is easy for an adult is not so easy for a kid. Having T1D is a real issue for the SAT, driver’s license, AP exams, etc.</p>
<p>Weird.</p>
<p>compmom, I could not agree more with your comment on type 1 vs. type 2. It is very hard when people think my D could have avoided diabetes with diet. I wish there was more education on the differences. This thread is great, and I agree, it is like talking among friends.</p>
<p>My only advice is to really work with your son on his independence in taking care of this diabetes. he is different. Not good nor bad but different. And you almost need to think, if something happened to mom and dad, does son have the discipline to take care of his own body. It tough and not fair to have to deal with diabetes for kids, but they have no choice. It’s like teaching them to lok before they cross the street. You will not always be there to look for them. They MUST be much more responsible then their peers. its tough and scarely, but it’s your jobnas parents to be sure they have all the tools they need. Sounds like you all have done amazing jobs and have strong kids. </p>
<p>To the op, there are parents who’s kids never have deepen laundry when they go to college, and your son will have a much tougher job, but he can do it because he has to. Find more ways he can be away from you in a safe environment, but where he has to help himself. Doing is the best teacher.</p>
<p>This thread is very nice…I checked out cc for posts about type 1 and college last year since I had so many questions, and they only thread I found was about how some of the posters knew/heard about college kids dying in their sleep from lows. I had just sent my son back to school to get on with his life (which he wasn’t too happy about) not even knowing he could go low in his sleep! Scared me ****less! Lucky he had a nice roommate (although not really a friend) who my son confided in so and I made my s e-mail me every day so I knew he got out of bed.</p>
<p>I also agree with the poster about people assuming his type 1 was caused by his diet. Altnough he was (and is) a bad eater, his doctors assured me that his diet did not cause this…they said they would have 50% of college kids in their offices with Type 1 if it did. Also it does bother me when I mention S is Type 1, I’ll get “my mom, brother, friend etc. is type 2” and then hear the stories about their difficulty in taking their pill, controlling it etc. or how they beat it. I understand that Type 2 is awful and can cause difficulties, or how proud they are that this person “beat it” but it is different than Type 1. Without insulin these kids will die. So sorry, just had to get that off my chest! Of course a year ago today, I was probably one of those people too.</p>