Parents with T1 diabetics-college close or far?

Parents Forum
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Well, a few things - first of all, his condition is not something that could be as quickly serious as diabetes - when affected he sort of checks out into a catatonic, uncommunicative state and sleeps all day. To make a poor comparison (but I haven’t come up with a better one yet) it’s like he has immediate onset autism. However, the symptoms just slowly dissipate over time. So other than the possibility of him hurting himself during this period (which I doubt having been through it), he just needs to sleep. Second, we do have relatives in the northeast, so we do have folks who could get to him before us in an emergency. Third, his condition started with the worst episode, and every one since has been less severe. The doctors feel that this trend will likely continue so if it happens, we’re hoping it will be a mild situation. However, we will probably have our doctors write a note to health services at the university describing his past issues (it really doesn’t even have a name per se) so that they can respond accordingly if it happens.

He hasn’t made his final-final decision yet, but it’s between Syracuse and Northeastern. The medical resources in Boston are of course beyond doubt, our sister-in-law lives 35 mins from downtown, and his grandmother lives 1.5 hrs away. Syracuse (which of course is where he’s leaning) has an on-campus hospital as well as a strong on-campus student health services dept. Grandparents are a 3.5 hr drive from there.

As far as independent, we’ll see how often he wears the same pair of underwear when it’s up to him to do laundry, he’s already alluded to needing to buy 125 pairs of underwear per semester… He did do a 3-wk summer program at Amherst a couple years ago and managed just fine, so he is definitely our kid with more wanderlust - our 6th grader will probably choose the cheapest, closest alternative as he is more of a homebody.

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Syracuse does not have an on-campus hospital. My son is a freshman there. It has a health center and there are quite a few parents complaining about its services. My son had a minor concussion in the fall and ended up at Crouse Hospital, as the Health Center wouldn’t give him an appt. same day. Crouse is walking distance from campus, and he was treated very quickly and very happy with the care he record. There is also a walk-in clinic close to campus, but they wouldn’t take his health insurance.
No regrets – we live very close to Boston and very happy with 'Cuse

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*happy with the care he received

104

off topic here, but wanted responses related to Type I diabetics - wisdom teeth extraction with anesthesia. Any recommendations regarding pre-surgery prep and post-surgery recovery, including food recommendations. Did your child get antibiotics post -surgery to prevent infection? How about steroids to help with inflammation?

Son’s endo recommends reducing basal overnight so son will not go low (won’t be able to treat before anesthesia). Also recommends first appointment.

Any and all info appreciated.

105

My son hasn’t had his wisdom teeth out yet. However, he’s been under anesthesia twice. I believe he dropped his basal and went on antibiotics. I think his blood sugar went a little high, but other than that, everything seemed to go okay.

His surgeries were eye and ear surgeries.

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I know my friends son had his out in the actual hospital rather than the office or surgery center. Not sure what they did about insulin prep.

107

I don’t know if you are aware of the new Dexcom Share program, which sends blood sugar data to an IPhone from the patient’s receiver. If you got a CGM recently, the Share program is free. This does pose some boundary issues, of course, so your son might not want to use it, but it is a handy back-up.

For tummy illness or any other illness that lowers blood sugars, we were taught to use a partial dose of glucagon. I cannot think of a single stomach virus that we haven’t used 1/4-1/2 a glucagon at least once. It takes about 20 minutes to work. For those situations when our kids have eaten and done insulin, and then vomited, but are unable to keep juice down, glucagon works miracles.

Just want to repeat that EMT’s generally can only transport and cannot do glucagon or IV dextrose.

One accommodation my daughter was actually required to have was any timed exams in a separate room. She needed breaks to take care of her blood sugars. However, as one current thread brings up, the student in a separate room needs the same access to questions and information about the exam as anyone else.

It might be helpful to say that in our experience, type 1 comes in many levels of difficulty in terms of management. This is a relevant factor too.

I would think the best resolution for the original poster’s son might be going to school closer to home, where he can mature with support, rather than a gap year. (I realize that a decision has probably already been made.)

My daughter also has some other serious health issues but I did not limit her school search at all. Instead, she herself chose a school an hour away. Thank heavens she did considering the blossoming of one of the other health issues that required my help at times. But those years were training wheels. Now she is headed across the country for grad school!

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We just met with our son’s endo, and he will write whatever we think is best on the form for the disability office. My son’s had accommodations at the community college, but he’s never used them in the two years he was dual enrolled. Certainly, though, we should probably have the endo write something to the effect of, if my son feels he needs accommodations for a long test, he should get them. He typically preps before a test by dropping his basal or taking sugar. He will tend to go high during tests, to be honest, because of nerves and probably because he over compensates by having sugar/dropping basal. It’s too bad, really, as he tends to get very fuzzy headed and tired when his sugars rise.

Basically, my son has just informed all his profs that he has diabetes, and let them know if they hear beeping, etc. that it’s his pump. He’s never had to stop in a test, not even the SAT, as far as I know, but that could change easily.

His endo also said he would request whatever housing accommodations we feel would be most beneficial to my son. So it might be his saying my son needs to be able to choose whatever’s best-single room, substance free room, room near dining hall, room with A/C (son’s sugars are affected by heat), etc.

Well, as of now, my son will be going 2500 miles away after his gap year. We’ll see how it goes when the time comes.

Son is on an omnipod and has a CGM, but refuses to wear it. He did say he’d wear it when he goes away; we shall see.

Good to know that EMT’s can admin glucagon. We’ve only had to do glucagon once, and it was totally random-no clue why his sugars dropped so low, so quickly. It was very frightening.

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You can see on http://www.collegehouses.upenn.edu/about/map that some of the UPenn dorms are very close to the hospital, in case you and he believe that quick access to such is desirable.

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No, EMT’s can NOT do glucagon. But in a city, that won’t be an issue. Hospital close by and more paramedics, who can do IV dextrose.

Look into the SHARE program at Dexcom! Though your son may not like it much :slight_smile:

UPenn is a great school and will be worth the wait while he gets things straightened out for a healthy start :slight_smile:

111

I am cautiously optomistic, @compmom. We hope the gap year will give him time to gain confidence, independence, and even better health management. His A1C was higher than it’s ever been (7.0) because he’s 100% managing his diabetes and doesn’t check as often as he should. I would like to see that down next time. (His typical A1C is between 5.8 and 6.5)

I think he wouldn’t like the Dexcom because it has tubing, correct? I’ll mention it to him, though.

Thanks for the map, @ucbalumnus. We are planning a visit in September and hopefully, we’ll have time to really explore the living spaces.

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The Dexcom does not have tubing, no. It is much more accurate, according to reports, than the Minimed CGM. And it has a SHARE function that would allow someone else to follow his blood sugars, at night, for instance, via IPhone or Pad.

His A1C’s are stellar.

My daughter’s diabetes is brittle: during college, she was lucky to get in the 8’s and stay safe. She has been home this year after an accident so I have seen how hard her diabetes life is, after many years of not being involved. Her last A1C was in the 6’s but at a price: sensitivity to exercise that leads to lows while simply walking somewhere, and inability to feel lows at night. I am actually encouraging her to run a little higher when she goes across the country. (The CGM helps but know that if for any reason it stops working, there is no alarm to alert you -this has happened once a month or so).

Anyway, if your son can maintain an A1C in the 7’s while achieving independence, staying safe, and living his life, I think that’s great- I would love that for my daughter!!

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@compmom, I wonder if girls, because of continuing hormones, have a more difficult time maintaining steady sugars at certain times of the month. I know my friend who was diagnosed with T1 at age 48 has challenges due to pre-menopausal hormones. My son’s numbers were so hard to control during puberty, but once he passed through, he became much more stable. He used to not feel his lows-very scary, I agree! But now he feels them again-go figure!

Thanks for the encouragement about 7.0 being a good A1C. I will remember that.

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Joslin thinks she may still sputter some insulin, so to speak. She has to adjust basals constantly!

Good luck!

115

Just bumping this thread to see how other parents of T1 diabetics and their kids are doing.

If you have a T1 in college, please feel free to share how it’s going. I’m also curious if any of your kids are involved in CDN (College Diabetes Network).

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D just finished her sophomore year and is doing well. She was diagnosed at age 7. She wears an insulin pump but last year took a break from the pump for two months. CGM did not work for her and she stopped it. We insisted she go to a school that had good medical facilities close by and also that we could get there by car- we agreed a 5 hour driving radius was good. She ended up 2.5 hours away. Overall she has managed extremely well. We have had “bumps in the road” but again managed well. D did register with the disability office and made sure all her teachers knew she was T1. She was able to get accomodations in place to be able to drink a juice or water, test her sugar or leave to use the bathroom. I was scared when she left but knew I needed to let her go. I still worry but it gets easier

Feel free to inbox me if I can help in anyway.

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I am a type 1 diabetic parent. I use an insulin pump and occasionally use the Dexcom CGM. If I had a diabetic child I would definitely have them use the CGM at college. There are so many variables during the college years. It also would be wonderful for the child to have a close friend for a roommate or at least make them aware of low BG symptoms. My hubby has caught me many times during a low that I failed to recognize.

118

My daughter is across the country now, doing a PhD program. The CGM has changed her life.

During undergrad years, I never once asked about her blood sugars. Now we are back to being a team overnight (only) but she needed those years of autonomy. She had other health issues. Very scary period but lots of growth.

At one point, I realized that if she was going to die overnight, it made no difference if she was in the next room or 3k miles away. With the CGM alarms, I now function as backup. And if she needs sleep I also manage overnight on occasion, so she does not have to wake up and think, or watching the curve of blood sugar to make sure intervention happens early enough.

I have a roommate’s number in case she is irrational from a low or unconscious. I don’t think she has told the roommate much.

She’s spending the summer with a friend on the Arctic Circle, in a fairly remote place but there is wifi. As long as the CGM works, I am okay with it. She would never be able to do this without it, because she is so brittle.

119

My daughter was diagnosed with Type I diabetes about 3 months ago. HA1c of 15. She started by using an insulin pen and aggressively monitoring how foods affect her blood sugar. She is mildly obsessive and a tad perfectionistic, traits I wanted to help her relinquish, but now, to be perfectly honest, I am thankful for. Her numbers fell in line very quickly but not without a struggle. In that time, we have traveled overseas, she did a few college trips, and she has had several illnesses. It has been a harrowing experience! Still, she looks so much healthier and happier since her blood sugars have been controlled. She has gained weight, has good skin color, and is mentally sharper. When her blood sugars were running high and we didn’t know what was going on, my once bright young daughter became downright goofy. Actually, backed her car into mine in the driveway. Rear ended another driver as well. Couldn’t focus at all. We had no idea what was happening to her.

Her mother and I discussed a gap year with her. She would have none of it. We encouraged her to consider a school close to home (UCSD). She considered it, briefly. She leaves California in a few months to attend a college in Massachusetts (Smith). So we are part of the kid will be far away group!

My wife and I are coming to terms with the fact that it is her life and her illness. We want to keep her safe. Protect her. Make this all go away. But we can’t. She knows the risks and has spent a fair amount of time reading about diabetes. She considers it her responsibility to know and manage her condition. I am thankful for this. However, I am trying to convince her to try a CGM. She is open to it and may be discussing it with her endo today. We will see.

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I so appreciate all the stories. Thank you. Always good to know others out there.

My son will not wear his CGM, unfortunately. He’s so skinny, he does not want one more thing on his body. I cannot convince him; he needs to see the benefit. I would love for him to have an artificial pancreas-all in one system so he only has one thing poking in him.

He said yesterday (after a fantastically successful cello solo), “I would really be something special if I didn’t have diabetes. I realize how much of my life is spent managing diabetes, and how much more I could be doing if I didn’t have it.” He’s always done a good job, but it’s not a perfect science and he’s particularly sensitive to highs and lows. His A1Cs have always been 7 or under, but no matter; diabetes seems to rule his life so often. He’s also one of the third of diabetics that has clinical depression.

He’ll be going to school 2600 miles away in the fall. I don’t know how long he’ll last, but he’s going to try.

Did you all see this article? Pretty cool.

http://www.wsj.com/articles/tech-savvy-families-use-home-built-diabetes-device-1462728637