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how do we prepare for life at college?

Discussion in 'Parents of College Kids and Young Adults with Type' started by ChaosRules, Apr 14, 2014.

  1. ChaosRules

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    My son is heading 1000 miles away this fall to college. He will live in a dorm, presumably in a small room with one to three roommates. There will be a kitchenette on each floor, but it is shared among about 70 people.

    I haven't called Disability Services yet - I'm not even sure what to ask them to do for him. He doesn't want to be treated any differently because he has diabetes, and he's never had to use any of the accommodations listed on his 504 plan. He doesn't want to make a big deal out of it, so he doesn't want to be telling his teachers he has diabetes and asking for any accommodations. I think it would be a good idea for him to make a point of meeting his professors during their office hours and explaining that he wears a pump & sometimes a glucose monitor, so it might look like he's texting during class if he has to take care of an alarm, but he's not in fact texting. I think they would appreciate knowing that, and then also they may be more understanding if he does need to leave class to take care of a low or something, if they already knew he had diabetes.

    I don't know how he'll have the space to store his supplies. He's on a pump, so he'll need infusion sets, reservoirs, alcohol wipes, keto-strips, test strips, lancets, meter (maybe bring two?), glucagon, fast carbs for lows (he uses 15 jelly bellies, since they're one carb each), extra batteries, G4 receiver, transmitter, & sensors, humalog pen in case something happens to the pump, and of course insulin. Am I forgetting anything?

    He'll have to have a mini-fridge in his room for the insulin. He'll also have to have food handy for any lows (which usually seem to hit him late at night, after the dining hall will be closed). I'm trying to think what food he might be able to store in his room. Crackers & peanut butter, and maybe cheese in the fridge? Granola bars?

    Any advice from those of you who've already done this would be greatly appreciated! Thanks!!!
     
  2. Sarah Maddie's Mom

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    We aren't there yet, but that doesn't stop me from thinking about it.

    I suppose I'd start from the ground up. Supplies can always be kept in a bin under the bed. Insulin may or may not be safe in the mini-fridge as they tend to have lousy thermostats. I suppose I'd buy a fridge thermometer to at least have some idea if it's working properly.

    We treat lows at night with juice and chocolate milk. If he's pumping and G4ing he shouldn't get to where he needs to actually eat in the middle of the night, though it's always good to have bars and crackers handy.

    I wouldn't jump to the disability office just yet - but I would want someone trained to give glucagon. That may be a job for the RA, or a roommate, but there should be someone, or better, a few people.

    I don't know how much you've discussed alcohol but before he heads off your son should know how to manage drinking and diabetes cause he'll have to at some point.

    I think your son's endo should also be helping you make this transition. Above all your son needs to know when it's time to ask for help, i.e. a stomach bug, fever or flu to the point that he isn't up to managing his diabetes alone. I suppose I'd want a good sense of student health services, their hours and what emergency assistance they provide and what sort of student health information they keep on file so that he doesn't get ignored should he show up vomiting and at risk of DKA.

    I guess in short, I'd focus more on laying the foundation for your son to manage things well and have access to any medical help he might require before I start informing Profs or the disability office. In the end if your son settles in and want that, or feels that he needs that you can always revisit the matter.
     
  3. Amy C.

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    My son is finishing up his second year at college. I am fortunate that he is attending school in the same town and lives about 5 miles from home.

    For the supplies, I bought two large under-the-bed storage boxes. I am not sure how he organizes it now, but it started out with food in one and supplies in the other.

    In the dorm, he had a refrigerator for the insulin and some food. He now lives in a house with 16 other people (a type of co-op situation) and keeps his insulin and snacks in the kitchen. He has glucose tabs in his room.

    I still order the supplies and the insulin. My son is supposed to tell me when he runs low or suffer the consequences. You will have to think how your son will order supplies and how to get his own snack food.

    My son does the day-to-day management. Not very well, but he is trying. Pre-bolusing seems to be a habit of the past and his A1c reflects this. Sometimes, I look at the pump to see what is going on, but usually not.

    My son takes himself to the endo appointments - I still make the appointment. You will probably need to find an endo in the town where your son will be. Most college kids don't come home every 3-4 months.

    College accommodations are quite different from high school. Most colleges have a disability office which ascertains the disability is legit. Once he gets approved for accommodations, he doesn't have to tell anyone. Lots of kids have the accommodations and the professor doesn't need to know what it is for, just what the accommodation is. My son has extended time for exams and can register first. Other schools have different accommodations offered. Your son ought to check out what these are before rejecting them.

    The first semester was the hardest.
     
  4. nanhsot

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    I could have written this post last year, it all seemed so overwhelming. Truth is while there is some juggling, it all works out, promise. My son has not registered with disability services, and it's only mattered once. He went to his professors, explained why he missed a class and all have been really understanding. He did do poorly on a test due to a high but that was his own fault so he just had to sort of deal with it. I wish he would register but as an adult it's his choice.

    Supplies are a pain, but not a huge problem. I got him 2 of those large underbed type boxes and he stores all his stuff in there. He lives close enough to home that I keep some here too and ship to him when he's low (if he's not due a trip home, he comes home monthly). He's in a VERY small room with another person and shares a bath with 4, it's tight but it works. I got him a big jar and filled with skittles but he said those didn't last long so he's using mostly juice and glucose now. We moved his furniture around and bunked his bed so he has lots of room under and then shoved his desk with hutch so he can put stuff on the hutch top and can reach it from bed.

    Definitely send LOTS of extra meters. He has 2 and then one in the box and I've still had to buy more.

    The pump hasn't really even raised an eyebrow as far as believing he's texting. He's on a fairly small campus though, and I'm assuming most know he's diabetic. He has 2 close diabetic friends too, they help each other out. I wish he'd wear his CGM more, he wore it constantly first semester but rarely does now.

    He has small fridge, and I send tons of food home, I also shipped care packages regularly last semester but less so this semester. I send PB, crackers, frozen leftovers, lunch meat, cheese with him when he visits. It'll be harder to stock up on that stuff with yours being far away and less visits, but surely they will have access to a grocery store. Sending care packages is a lot of fun though, I'm preparing an Easter one now. You'll be pleasantly surprised at how quickly they adapt to being on their own.

    I cried and cried and seriously was depressed when he left. It was SO hard. By the time he was leaving he and I were clashing heads and I thought I was ready for him to go but it was seriously horrible. A month after he left our lives had adapted and it's all good, now when he visits it's kind of weird! When he visits I'm relieved when he goes again. It's a strange, odd, difficult time of life. But it's good and exciting too!
     
  5. nanhsot

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    And a bit more: We use Walgreen's pharmacy for ease. I tend to keep track of his prescriptions and usually even order them for him, we decide together if I'll pick up and have here or if he will. I can do it all online. I had his home MD update all his stuff so the new MD wouldn't have to mess with it for a while. His new MD is a basic adult endo and is a lot harder to have access too, that's a hard transition.

    I registered my credit card with Walgreen's for prescriptions only, he goes in and just picks it up, easy on his part.

    For his pump supplies, start working on getting surplus if you can. I was able to send him a full semester worth of stuff, then I kept ordering and had some here for when he visited and for the next semester. I had them ship stuff there once I think, but usually it comes here. Those type details you guys will have to work out for what works best.

    Ask questions if you have any!
     
  6. nanhsot

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    My son tried to train his suitemates in glucagon; they kind of freaked, so choose wisely in training someone! In the end he told his room/suitemates to run across the hall and get S, one of the other diabetics.

    Yes, on the alcohol. Assume he will drink and empower with information. Hope he doesn't but don't send him without knowledge on being safe and careful if he does. I sent him this article: http://www.diabetesmine.com/2012/11/d-teens-and-alcohol-no-bull-from-uncle-wil.html
     
  7. ChaosRules

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    Good suggestions. I hadn't thought of under-the-bed storage! That's a great idea.

    We have indeed talked about alcohol, and I think he's scared enough of it that he will do as we ask and try it at home first, so we can monitor how is affects him. At least he definitely knows the risks and how it will affect him differently than other people since he has diabetes. I know there's a subset of students at his college who smoke pot, and I have no idea how diabetes affects that. But he says he's not willing to risk it (at least that's what he says now!).

    Juice and choc milk are good ideas, although milk might be tricky to keep in a dorm fridge. He has a G4, and I will insist that he take it with him, but whether he uses it at all in college remains to be seen. He really dislikes (is that a strong enough word?) wearing it, so only does every few months when I insist that it's time to get some readings again. It usually takes him a week or more of my nagging after I first ask him to put it on again before he actually does. So I don't have high hopes that he'll use it much when I'm not around. I wish I could convince him how handy it would be with the irregular hours he's going to be keeping, eating at different times and variable activity levels.

    I was planning to order the supplies and send them to him. Maybe some snack bars too. He has an endo appt on July 31, and will be back home mid-Dec and mid-March, so I think we can work with those times for appointments and be OK. I will definitely have to check out the student health center, though, and I think I will call the disability office just to see what they offer.

    Thanks for the advice!
     
  8. nanhsot

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    At that next MD appt have them update all his prescriptions for as long as they legally can, one less thing to worry with.

    For chocolate milk, you can actually buy it that doesn't have to be kept cold, my son kept these at his bedside for a while (he gets bored and changes treatment frequently). If you google shelf stable chocolate milk, you should see what I mean, we can buy it at the grocery here, but amazon carries it too (I love amazon, look into the free student prime account they offer).

    edited to add: some universities (larger ones) have on campus health services that include a pharmacy. My son's does not but that's a nice option if they have it, definitely check into that.
     
  9. mocha

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    When I was in college, I kept supplies in the closet or in their own little area, whatever worked for the room. Sometimes under the bed is best for shoes and clothes and storing things not in use.

    I did live with a minifridge. Remember to store the insulin as far away fro the "freezer" part of the fridge. Sometimes those buggers decide to supercool liquids, which is an awesome science experiment and ruins insulin.

    There many be roommate issues where people are insistent on storing their things in your minifridge, or taking things from your minifridge. There are locks you can buy to help with this problem.

    Sometimes, maintenance workers unplug everything. Save everything often and check the fridge plug whenever they've been in your room.

    As far as disability services...I honestly never went there. I never even told half my professors, mainly because they came across during the first class as jerks. It's a choice that everyone has to make for themselves. Typical things to ask for are extra time on tests or different testing rooms, food, drinks, meter, etc. available at all times. This was (almost) never an issue. Most professors allow food and drinks in class. And very few places on campus don't allow food and drink (like chemistry labs, which makes sense, because no one wants you eating glucose tabs laced with who knows what all they make in there). In those situations, I talked directly to to TA or the professor and worked something out.

    As far as prescriptions go, there may be a pharmacy on campus. Apparently some Rx plans don't cover some pharmacies (mine doesn't now because they're jerks), so make sure that everything works there. It makes life easier when you can pick up insulin on the way back to your dorm from class instead of either taking the bus (which may take forever) or awkwardly asking for rides from people.

    Ummm...oh, and if you kid hasn't called or e-mailed or sent you a text for a few days, they are more than likely not dead in a ditch on the side of the road somewhere. They probably are sleep deprived and trying to remebered to eat and figure out how to balance their schedule. Do not send the cops looking for them in their dorm room (my mom was nice enough not to do this, but my roommate's mom wasn't). Also, patiently wait to ask about all their medical stuff when they do finally call or text. The first thing they hear when you answer should sound like every other parent of every other boring kid in college-how to do laundry and reminders that poptarts are not meals and buying more underwear is not a solution to not knowing how to do laundry, but an A for effort.
     
  10. KatieSue

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    Mine's decided to attend our local college so she'll be living at home. She's already been transitioning a bit to doing some things herself, calling in bad pods, going to her Endo appointment alone etc. She went to a campus discovery day this weekend and picked up the forms from the disability office, this was her idea I wasn't even there. I think really the only accommodations she needs are being able to keep her CGM/PDM with her and having access to water and snacks. Since she's omnipod the PDM isn't attached so it could be seen from afar as something it's not.

    In High School she's always gone to all her teachers at the beginning of the year to say she's diabetic and if she's acting loopy or off to please call the nurse. She's always been very open about her diabetes, she wears her pods on her arms so they're almost always visable, so I don't think it's going to be much of an issue.

    Alcohol we've talked about quite a bit. We'll just have to cross that bridge when it happens. So far she's had a core group of friends that aren't interested in parties and such. That can of course change at any moment.

    She's so darn excited about college, she's already applied for summer school, so I'm hoping it all goes swimmingly.
     
  11. ChaosRules

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    Wow, lots of good information! I will definitely check into a Walgreen's close to him. He'll be in Boston, where I've been once (for a day, a couple weeks ago, when we went to tour his college). But we already use Walgreen's here, and hopefully there will be one within walking distance. At least he can get his insulin there.

    Great idea to stock up on pump supplies. I'm not sure I can, though, because he's been using his Minimed Paradigm 722 pump for so many years I'm afraid it will break while he's there. So I want to get him a new pump soon so he can get used to it before he goes, but he can't replace it with another Medtronics because he has a Dexcom G4, and all the Medtronics pumps now come with integrated CGMs. Our insurance won't cover that, since he already has a CGM. So we're in the process of deciding what pump to go with next. I'm not sure I'll have time to hoard supplies before he goes. But I can send them to him, so I guess that's ok.

    I'd love to loft his bed, but it turns out that he's chosen the only school in the country that doesn't have beds you can put your desk under (at least I've never heard of another dorm room where you can't raise your bed!). Hopefully he'll just get a double room (although those are tiny enough), but he may get stuck in a triple or even a quad! That's why I was thinking of talking to disability services initially - to get him place in a room where he'd have enough room to store his supplies.

    Skittles are a good idea. We've always used jelly bellies, but I know he's sick of them by now. What does your son carry around with him? Mine doesn't carry anything, usually not even a kit. I imagine he'll be doing lots of eating without testing first, but at least he does bolus for the carbs every time. It's why I wish he would wear the G4 more often. It's so hard to make an adult (or near-adult) kid do what you think they should!

    I can probably send cheese with cold packs. My son loves cheese. I'm sure he'll eat his care packages just for fun, and not save them for when he needs food for lows, though. I guess he'll work it out.

    I've already cried and cried!! As soon as he decided to accept the farthest college he applied to! I so wanted him to stay closer, but that's just for me - I know this is the best school for him. He's a good kid. I know he'll have a lot of fun and make a lot of friends (thanks for the link to the drinking advice!). How did your son meet other diabetic kids? I'm guessing my son won't publicize it, and it probably the other kids won't notice his pump.

    When my first son went away to college nearly 5 years ago, I was mostly just relieved, and I didn't cry at all. This second son had just been diagnosed with T1D a few months earlier, we were breaking ground on the house we are building ourselves, and I was overwhelmed. One less person at home to worry about made my life a little easier. (That one person ended up coming back home a year and a half later, living in our basement, jobless, for over a year. Now he works 20 hrs a week and lives in a trailer a few miles away, so we still see him a lot. But that's a whole other story!)
     
  12. ChaosRules

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    Right, I didn't think about that chocolate milk. I think Horizon even has an organic version, which I think I've seen on Amazon. Great idea!

    I'm guessing they don't have a pharmacy. It's a very urban campus, not typical, just college buildings intermingled with city buildings, no quad or anything. But surely they must have a student health center! I'm off to check on that...
     
  13. ChaosRules

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    Thanks for the view from one who's been there! I'll try not to worry about death too much (but I have a really active imagination - I used to worry he'd die overnight), and I'll text instead of sending the cops. Good advice on the phone conversations, too. Thanks!
     
  14. ChaosRules

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    Sounds like you have it made! My son doesn't want anyone to treat him any differently because of diabetes, so although he doesn't care if people know about it, he's not going to make a point of letting them know. I think he mostly just wants to act like a non-diabetic person and be treated like one. It's good in the sense that he doesn't let it stop him from doing things (except drinking, hopefully!).
     
  15. nanhsot

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    My son switched to Tslim just months before leaving for school, I had to appeal to insurance and all that to get it before he left, so it was a definite challenge. If you do similarly (based on the other thread) talk to your rep, mine was VERY helpful and gave me a little boost in the supply department; we have to go through a DME company (edwards healthcare) due to a contract with our insurance (tandem is not a provider), they initially only ship out 1 month of supplies but when I explained our situation they were wonderful and let us have 3 months to go with him. Ask, appeal, explain, they'll work with you.

    My son doesn't carry anything with him. Don't agree with that, don't recommend it. He knows where there are vending machines, the cafeteria for soda, etc. It works out. He does keep glucose in his vehicle and in his dorm. Mine is similar in the G4, though I did visit him this weekend and he promised to put it in to make sure all is well with his basals and such.

    My son is at a fairly small campus, it's part of a larger campus but since he is doing coastal studies (maritime engineering) he is at the campus by the Gulf. It's pretty cool actually. His very first day there, we were moving him in and this VERY friendly guy says "hi, what's your name". My son has a fairly unusual name and this guy immediately said "awesome, you're the other diabetic, I'm just across the hall from you." How he got word, I'll never know, but that's how he met the first, and within minutes of that meeting they had found the other! They live in a triangle across/next to each other in fairly large multistory dorm, so it was just luck. When he's allowed to have an apartment (age 21 there) the 3 of them want to live together. Not sure how brilliant an idea that is but we'll see as time goes on! I'm very appreciative of the support he has in these guys. My son is going through some challenges right now (anxiety, depression) so I'm glad he has good friends. That's probably the hardest part, not being nearby to help.

    The whole push-pull of this age is so...odd. If you had told me at age 15 or even 16 that I'd be SO READY for him to leave, I'd have told you NO WAY. There's a natural progression where you are just so ready to see the back of them, even when you love, worry, and genuinely LIKE them, it's just time. I call it the "don't tell me what to do, but hey, could you make me a sandwich" phase. Not adult, not child. Not visitor but not living in your home. Weird.
     
  16. ChaosRules

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    Yeah, I remember reading about your son meeting the other diabetic kids when you wrote about it last fall. That sounds ideal! I just called the Disability Office at his college and chatted with them for a while. I asked if they could give his number/e-mail address to any other incoming T1Ds that might call, and they said sure. I also asked if they could give his info to a current T1D student so we could ask how they worked it all out in the dorm, but now that I think about it, maybe he doesn't want to give that information out. He might want to have a fresh start in college where people don't know him as "the diabetic kid."... OK, I just called them back, and they said they could contact some current T1D students and ask if they'd be willing to give their contact info to my son instead of the other way around, so he could make contact if he wanted. Wow, they are really nice and understanding!

    Good advice about the T-slim. I'm glad I thought to start the process early - hopefully this is early enough! I will definitely ask for a 3 month supply.

    I agree that it's really hard not being close. My older son suffered from anxiety/depression during his second year in college, but didn't ask for any help (he was an 8 hr drive away from home), and it overwhelmed him until he stopped going to class or even leaving his room altogether. It was a mess, and I can't help but wonder if it would have been different if he'd been closer.

    This one seems a little more stable emotionally, but college is a very trying time, so we'll just hope for the best. I think it's very hard to be young! No way I would want to be that age again.
     
  17. Megnyc

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    Hi, I'm a current college student (junior studying biomedical engineering). I also worked as an EMT for our campus health service for 2 years, and now as a paramedic for the past year so I have a decent amount of experience with how health services work at least at my college :) I'm about a 6 hour drive or 90 minute flight from home.

    I lived in a dorm my freshmen year, my sorority house my sophomore year, and now I live with my boyfriend in an apartment about 2 blocks from campus. I don't see much on your list that is missing. You might consider getting an rx for zofran and instructions on how to use it in case he gets a stomach virus. Also, mini glucagon (you can print out instructions from this website) can be a life saver if he is too sick to eat carbs. A blood ketone meter is also a lot more useful than the strips and he is probably much more likely to use it than the urine strips especially if he has a shared bathroom. Clear sick day instructions and when to call the you/the endo/911 are also crucial in my opinion.

    I currently see the endo in my hometown since I am home for around 2 weeks 3 times a year. I am not registered with disability services and it has not been a problem at all. I don't tell my professors I have diabetes and I have had classes that ranged from 9-300 people. We are allowed to eat in class except for labs. During labs I use the dexcom and if I need to test or eat I just go into the hallway--- it's not a big deal at all. My mom arranged for me to meet with a patient advocate (who was a social worker) at the school clinic about a day before I moved in to basically get a tour of the clinic, see the pharmacy, the urgent care, and learn what services they offered. I then had a follow up check in about a week after school started to make sure I had managed to get all prescriptions transferred, figuring out how to get decent meals, and was doing ok. Normally they have students with diabetes also meet with a nutritionist from campus dining but I didn't see the need to. I actually found it really reassuring to know that if I were to get sick they would be fully capable of taking care of me and also just that everyone there was super nice and very caring. We have a full service pharmacy which is great and I get insulin and all oral medications filled there.

    I manage getting all supplies on my own. My parents have their credit card number linked to our insurance's online pharmacy and they are just automatically billed for any expenses I incur at the school health center. I handle pump supplies, strips, and dexcom through a DME supplier so I pay for that and my parents give me a check twice a year to cover that expense. I have always stored supplies in one dresser drawer and then extras in a duffle bag under my bed.

    I have always kept insulin just in the communal fridges. I had insulin freeze in a mini fridge once so I really don't trust them at all. My freshman year it was in a large ziplock bag with a sticker that said "Life sustaining medication--- Please don't touch."

    I have had an overwhelmingly positive experience overall. I had a really tough time the last few days before I left for college but as soon as I was moved in I was totally happy and loved the place. My parents claim leaving me there was the hardest thing they ever did but I think they might be being a bit dramatic about it :rolleyes:. The first week I talked to my parents every night, then every few days for the first month, and now I try to call them every 7-10 days. It's funny now that I can go a month without even mentioning diabetes to them or them bringing up; while, early on the first questions were always "what's your blood sugar? what did you have for dinner? are you remembering to bolus? etc."

    That's all I have for now. I'll post anything else I think of and I am also happy to answer any specific questions you have :)
     
  18. nanhsot

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    Seriously, it WAS the hardest thing I have had to do in my life. We had taken him out to dinner and dropped him off, there was this loooonggg sidewalk into his dorm and we just stood there watching him walk away. It was horrible, seriously. We all got into the car and it was just silence, that airless type of silence. Then his sister just started to quietly sob. We all lost it. It actually IS the hardest thing I've done.

    I'm over it now and I'm irritated by him and his stinky clothing all over his room eating all my food when he visits!! :welcoming::glee:
     
  19. ChaosRules

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    Thanks!!! Those are all really good ideas! I had not heard of giving a mini dose of glucagon, or of using zofran. I hadn't thought about using the urine ketone sticks in a communal bathroom - I will look into a blood ketone meter. I don't think his school's health center has a pharmacy, but arranging a "meet & greet" is a fantastic idea. You're right - one of my main worries is that he will get sick & not be able to care for himself. Is there a clear set of sick day instructions somewhere that I could just modify & print out?

    I can imagine that leaving you there might have been the hardest thing your parents had done. I've already been crying, just in anticipation! I think in general it's a lot easier to go away than it is to stay where you are without someone you're used to, and add that to the whole protective feeling we have especially for our diabetic kids, and it's just awful! But I'm trying not to let him see how hard it is for me, because I know he's really looking forward to it, and I think it's going to be a fantastic experience for him. I hope I do get to talk to him every few days at first!
     
  20. Megnyc

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    I am attaching mini glucagon instructions. Either way he probably needs to bring more than one glucagon with him. I have the prescription written for 4 and I ask the pharmacy to make sure they don't expire for at least a year (ideally 18 months) so I can get a year's supply for one copay.

    Here is a link for a free blood ketone meter:

    https://www.choosefreestyle.com/select-your-meter.html

    You can get a prescription for the strips from your endo and your insurance may cover part or all of the cost. It is also more accurate and "real-time" than the urine strips anyway.
     

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