How far away would you let your Type 1 diabetic go for college?

Parents Forum
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I am curious to know how other parents have approached this issue. When our child was first diagnosed, a little over 4 years ago, we couldn’t imagine sending them away much further than 100 miles or so, thinking we could get there in a crisis, if need be. Now that time has passed and we’ve all settled into the diagnosis, I am wondering if that is an overly cautious constraint to place on the college search process (high school class of '22).

For the most part, our kid is very much on top of stuff w/ diabetes - and handles all aspects of care BUT (and this is a big one, lol) is a little cavalier about treating lows at night, and pretty much ignores the Dexcom alerts, as he knows we will arrive w/ sugar, as necessary. He uses both an insulin pump (omnipod) and a glucose monitor. Otherwise, a healthy, athletic kid who has generally just rolled with the punches since first diagnosed. Thanks so much for any feedback!

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I’ll PM you to discuss.

My kid was diagnosed at age 4 and I remember at age 14 it was a big deal when she went on a bus to a school trip without me. I could not imagine her going away to school.

She did not have a CGM during college years. It was not yet available. However, I let her choose where to go to college. Every night I put my cell phone on the bedside table and hoped for the best. Even now, she calls me every morning- a habit that used to let me know she was alive.

People really don’t understand this disease!

Since she got the CGM she has traveled abroad several times and goes to grad school 3,000 miles away. The Follow program is better than being in the next room. I use the baby cry alarm. I can call her or text her to make sure she didn’t sleep through the alarm and during tough nights, when she really soars after a crimped insertion, or does a large bolus, I admit to keeping watch.

I just want to say how much I admire your son, and, probably, you. If he was diagnosed in middle school years, that is tough. Emotionally, socially. If he is on top of things, that is a huge tribute to him and to you. And that gives him more freedom of choice too. Responsibility earns that.

He might need a single room so alarms don’t wake others. He should register with the Disabilities Office. It should be excused if he is late or misses a class for reasons related to diabetes. He also can have exams or tests in a room by himself due to alarms and should have extra time if he needs to do diabetes related tasks during the test or exam.

One more thing: I still took care of insurance, payments for supplies (of course) and made sure prescriptions were valid and filled. During college, those things transitioned to her.

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With any potentially deadly medical condition I would be more concerned with making sure there is decent medical care easily available nearby than I would about distance with someone who is well versed in what to do. If all a school has is a basic health clinic nearby, it would raise a caution flag. I would want knowledgeable people nearby and personally, I haven’t always seen that in a school health clinic.

If it is just a school health clinic I’d be talking with those there to assess Type 1 experience should it be needed. That could keep the caution flag up or dismiss it.

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My brother was a type 1 diabetic, diagnosed at age 8. He had his worst issues when he was a teen, living at home - he actually did better when he moved away & had to be responsible for himself. I agree that easy access to good medical care is important. That said, a young woman in my neighborhood has an extremely difficult time regulating. She has a service dog who is trained to help her. So I don’t want to assume that your S is like my brother was … each case is different, and I think you have to go with your instincts. Maybe you and your S could have a frank discussion with his doctor?

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What does the kid want to do? How far are they comfortable with going? This is a great time to have those conversations about if you want to go away, this is what you need to start doing (taking a more prompt approach to night time lows). My son isnt a T1D but he does have 3 other medical conditions and is prone to syncope if not caring for himself. Hes intermittently gone off his meds too (cue mom being extra annoyed and anxious).

As compmom says, technology has really improved. I would set the boundary that he has to continue to allow you follow access. While the alarm may wake up a roommate, this may be a great opportunity for him to room with a health science major who would be more understanding perhaps (and know if and when to get help if he needed it).

Agreed about ensuring prescriptions are filled and doctors appts made. I three way called with my son to set up a new pmd when he went to college (hes 3 hours away, his choice). Hes in his second year and now that hes back on his meds, Im literally filling them myself and shipping them to him or sending them up with visitors headed that way. Even if I call them into the pharmacy by his house he will not stop and pick them up.

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One of my kids has a roomie who is type 1. She wears some type of device that alerts her mom, 500 miles away, when there is a problem. The mom then calls her daughter, or if she cant reach her, the other roommates, to intervene. Works well.

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My son is a senior, diagnosed at 11 before 6th grade, and has attended boarding school a flight away from us for 4 years. It has made me feel way better about college, I’d definitely recommend a camp or something this summer. Maturity, along with a pump and cgm, have been key.

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@roycroftmom that device is the CGM (continuous glucose monitor) Follow program that allows others to view your blood sugars, both the number and a graph :slight_smile:

My kid is very hard to manage. Her MD has suggested a dog, even with the CGM, partly because I am getting older and cannot serve as backup forever. There seems to be quite a bit of variation in manageability with type 1.

We would never rely on a school health clinic. At every place she has lived, my daughter has had an endocrinologist in a hospital system. If the university is affiliated with a hospital in any way, that helps I guess.

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I guess I can’t speak from experience as my daughter is a senior in HS this year, but we agreed on a 14 hour driving distance radius for college. A distance, that while brutal - could be driven in one day.

We started conversations with her current endo and she said COVID has actually made things easier. She said telemedicine has really picked up and between MyChart messages and telehealth, an 18 year old managing T1D from a plane ride away is getting easier.

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I really appreciate the variety of the responses here, and i want to thank everyone that replied. @compmom, you are so right, the CGM is a gamechanger/lifesaver, and we really couldn’t imagine what it would be like to not have that. It’s only because of the Dexcom that we were comfortable sending our son to overnight camp over three summers (for a month at a time). We would never have even considered doing so had we not had that access to BG. It sounds like your daughter is really thriving and has had some amazing experiences for school and travel! You bring up an interesting issue re: insurance and making sure that supplies are in order. That is something we still do - but your post has me thinking about how/when we will make that transition.

@Creekland, you make an excellent point re: health facilities. Something to factor in, for sure. We have been fortunate that our son’s experience w/ T1 has been relatively uneventful (with the exception of crisis at diagnosis, of course). It makes a lot of sense to think about the “what if…” scenario.

@kelsmom, great suggestion to talk with endo. By pure coincidence, she is also mom to a T1, so her perspective will be really helpful. Fortunately, he’s a pretty mature and self-directed kid, including with diabetes care, so I hope that will continue to be the case!

@2plustrio for sure, we will have to listen for what his interests are, what he wants to do, what his comfort level is, etc. And you have really given me something to think about re: a roommate. We would not want to impose on someone to be involved w/ care, and certainly don’t want to disrupt anyone’s sleep with alerts…but there might be a roommate set-up where this is not such a burden.

@roycroftmom yes, that’s the device my son has. It is a a crucial part of his diabetes care for us. It always surprises me when I meet someone with T1 (or their parent) who doesn’t use it.

@comtnmom totally agree about the importance of a kid having had that experience of being away for a stretch; my son has done overnight camp (not for kids w diabetes) for a month at a time for each of three summers after diagnosis (also at 11), and that definitely helps me to feel more comfortable about his being off at college.

@3kids2dogs great that you are comfortable with your daughter being that far away! And you are so right about the telehealth thing! His last two endo appointments have happened that way, and it is likely to become a much more typical thing for all of us to do, not just the T1s!

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For the first ten years we didn’t even have cell phones. For the first 4 years, no pump: shots were like a tidal wave of insulin. CGM’s were out of science fiction for us. My kid pricked fingers 15+ times/day and the school nurse visited her in classroom every hour. So grateful for tech. I think the Follow program really makes it possible for our kids to go anywhere. If they sleep through an alarm, we can call them or roommate or building manager or 911.

ps In 1980 I took care of a Harvard professor who was blind and lame from type 1. I tested his urine and drew up a syringe (which had to be sterilized. As we know, the delay between urine test and actual blood sugar is considerable. No wonder he lost his eyesight.

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I know our college town has a T1D group on FB that is a resource for many things- including helping people who are new to the area. Kids aren’t usually on FB, but as a parent you can search to see if there are any helpful groups that would offer some peace of mind or help should your kid need it.

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There’s also the College Diabetes Network - you can sign up and be matched with a local family in your college town to help with T1D issues/needs, they also connect students.

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Diabetes management is so unique to every individual that I am not sure my kid would benefit from help from anyone who doesn’t know the detailed ins and outs of her particular case.

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I think it is at the level the student is comfortable- but for example, if they run out of insulin and need some in an emergency or need a local resource.

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Neither of my kids have T1, but my college roommate/high school friend did back in the dark ages of the 80s when it was all shots and pricking fingers. She did run low one morning and could not wake up fully. It was like she was drunk. I don’t remember what her reading was, but I woke up because she wouldn’t turn off her alarm. It took me a minute, but I realized something was going on when she was just laughing drunkenly when I asked her to turn it off. I got the RA and got some M&Ms from the snack machine. I think that is what she had told me to do if she ever needed sugar quickly. The RA called 911 and I fed her M&Ms (probably not the best choice in hindsight, but she did not aspirate so it was fine). She was coming around by the time the EMTs got there. They gave her some glucose in a tube stuff and had her test her blood sugar and she was good by then. I think she was a little embarrassed and also thought one of the EMTs was cute.

It is great that the tech is so much better now. She went into pharmacy incidentally and has an omnipod now and is doing fantastic. She was diagnosed pretty young, not sure exactly, but I want to say maybe around age 5? At the time we were in college in the 80s she did not consume any sugar with having to take the shots and all. Now with the omnipod she is better regulated and can have desserts (she likes to post her fave frozen custards on Facebook).

If it was my kid who had a condition like that I would like them to be in a roommate or at least a suite/flat where there were other people around and I would want to know how to contact those people if needed. It is scary sending our kids off, especially when they have conditions that need extra care. Oh, btw, we were about 1.5 hrs from home.

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I’ve been trolling college confidential since my DD started her senior year, but after reading your question, I finally signed up for an account. I was diagnosed with T1D when I was 13. Crazy time, but my doctors handled it very well and I’ve never looked back. This was in 1981. No pumps, no cell phones and the first glucose meters were just coming out to the public. Even still -

I did my junior year abroad (in Israel)
I travelled through Europe with a friend (after college)
I attended overnight camp for 8 weeks and after was a staff member

Did I have issues? Of course. Insulin reactions, forgotten insulin on a vacation, etc. I learnt how to figure it out.

Words of wisdom, for what it’s worth: Your child needs to know what to do in an emergency. Actually, all our kids do. If they are running out of a prescription, what should they do? If they feel sick, what should they do? If they are moving to a new place, find an endo or a regular GP and have a visit just to meet them so that the doctor knows what they are like when everything is OK, soooo, if something is wrong, that doctor knows them. Important numbers should be in their phone, prescription refills should be calendared (and guess what, emergencies happen and doctors can phone things in).

They should know how alcohol will affect their blood sugar. Let’s face it, college kids will drink. Alcohol lowers your sugar. Your child should have a frank discussion with their doctor about how to deal with this rather than assuming that it won’t happen. Mine did in high school and I was prepared.

Finally, the first thing I always did with new friends, roommates, people in classes, was tell them I was T1D so that they knew what to do, just like Sweetgum described. Everyone always knew what to do with sugar tablets or juice in case I needed it.

With all of that info, your child should be able to go to college wherever they want, regardless of the distance. If, God forbid, anything really serious happens, whether it’s diabetes related or otherwise, flying will get you there quickly if driving won’t. I always said that diabetes didn’t hold me back from anything and, in fact, made me more aware of my body and my needs. I never thought it was a disability but rather a medical condition. The only time that I needed special circumstances was so that I could bring sugar tablets into an exam with me. So that maybe worth looking into.

Good luck - we’re all scared as hell!

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Great advice, and you are absolutely right, all our kids should know what to do in an emergency. I think that the thing that I am finding myself surprised by is that while for the first couple years after diagnosis I would have balked at the idea of having him go much beyond where we’d be able to get to him quickly in an emergency, now that he’s of an age to start the college search process, I am more open than I’d thought I’d be to his casting a wider net.

We are in New England, with no shortage of great schools quite nearby, so between that and the T1 stuff, I think that we’d just assumed he’d stay local. He is a bright, accomplished, mature kid - I’m realizing now that that there is probably no good reason for him to limit his search to this area.

And as for dealing with diabetes without all of the recent advances, I can’t even imagine what an ordeal that had to have been! As far as alcohol goes, we would for sure encourage him to talk with his endo about this - and like we were with his older sisters, we’d be more comfortable if college were NOT his first experience with it.

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@lamom123 wise words but we did find that college years were a good time frame for transitioning to some of the independence you accessed earlier. Particularly dealing with insurance matters, and making sure meds refills were available when needed. Insulin isn’t something you can go without for even two hours.

Good advice to meet with a PCP when first arriving at school. I found the PCP for my kid, reading reviews and so on. She had other things on her mind. Then I stayed completely out of it.

Roommates may have a hard time with CGM alarms. Even romantic partners do.

Type 1’s vary in how hard to manage blood sugars are. My kid needed quite a few accommodations, despite the fact that she is told by her doctor that she is the most conscientious patient he has. Her type 1 is very hard to manage.

If the pump tubing is crimped, or a low blood sugar delays leaving your room, you could be late for class. The CGM and pump both make noise at times and are disruptive for others. It is hard for a proctor to keep track of time lost because you need to leave an exam room to do a shot. Etc.

Registering with the Office of Disabilities is appropriate despite the terminology. The Americans with Disabilities Act covers “medical conditions.” Accommodations are what made it possible for my kid to graduate from a top college and thrive.

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If you don’t already have it, get Baqsimi instead of the traditional glucagon pen - much easier for someone to spray something up your kid’s nose than figure out a multi-step injection in an emergency! My son’s teachers and friends all know how to help him in an emergency. It is critical they don’t keep it a secret, and 100% agree on the alcohol awareness!!!

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