Call for help! He's traveling abroad. Alone

Type 1 and LADA
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Well, not alone. He will be traveling to Italy with a group of scholars for an educational tour and leadership summit in Milan. By alone, I mean: without me.

We have a few months to prepare. I plan to simulate the experience at home as best I can. This will include Italian cuisine, varying levels of exertion, and the most challenging aspect: independent overnight care. This is the only area where Caleb is usually not involved. I prefer he sleep and let me do the number crunching.

Since Caleb was diagnosed with type 1 diabetes, I’ve been committed to not letting diabetes drive decisions about what he does. Having an older son has helped. We let Colin travel to Prague last year with his school jazz band. So when Caleb showed an overflowing enthusiasm about applying for a scholarship for a Global Summit to Europe, I knew I could not discourage it.

The fact that Caleb himself was not letting the thought of managing his diabetes alone in another county deter him is a significant progression in his self confidence.

So here we are. On Friday he received the news that he was awarded the scholarship. After initial shock, I’m in planning mode and am asking you for advice and suggestions.

We traveled as a family to Italy last summer. Blood sugars worked out pretty well as far as vacations go. Lots of increased basals overnight and extended bolus’ to deal with pastas, pizzas and gelatos. Temp basals to deal with daytime activity of walking seven miles a day in August heat resulted in no traumatic events. So I have an idea of what to do. Caleb does as well, but I was the one making the lion’s share of those decisions, so he needs to hone these skills.

The biggest issue is that Caleb just does not wake up at night. I hear Dexcom’s urgent low alert from his phone on the other side of the house and it wakes me up. It’s next to his head and he doesn’t stir. Given the complexity of activity and food, I think it will be necessary for Caleb to check at some point each night. But he has to wake up.

Here are some of my current considerations:

  • I’d like to try a split basal regimen – half long acting insulin, half pump basal insulin. The reasoning behind this is I found that the margin of error was more forgiving when Caleb was on injection therapy. The longer action of NPH he was using seemed to soak things up like a sponge, whereas all fast acting requires a more laser precise dosing amount. This, however, was 10 years ago, when he was 4 and newly diagnosed.

  • For months, I’ve been trying to figure out if we can get a #DIYPS project going . Caleb is an OmniPod user, and we have no current access to a compatible pump for this project. I’ve gone through the websites and forums, and am simply having trouble figuring this all out. However, given the reality of this now, I’m going to give it another go. I am welcoming of any help, aka: handholding, anyone is willing to offer. This seems like the ideal scenario for Caleb, and a commercial option won’t be available in time for his trip.

  • I will definitely make sure he has international cell service and am interested to know if anyone has experience with “following” Dexcom internationally.

  • New Dexcom inserter?! I’ve been watching for this – I thought it might be available by now. This will make one thing easier. Anyone with any info?

  • I am always open to new fast acting carb ideas, particularly those that can travel in the heat.

Thank you for any input, suggestions, shared experiences and ideas!

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Wow, Lorraine, this is GREAT! And also frightening of course.

We don’t have experience doing this yet (my son is 12 and was diagnosed a bit less than a year ago). But we have been preparing for a year abroad with my T1D son. And we have exactly the same philosophy as you: we don’t want diabetes to ever drive him.

How old is he? Will he have any adult supervising him closely? Is any adult going to sleep in his room? How independent in managing his diabetes?

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Hello Lorraine, that is a great news!!! Have you considered using other alerts, such as Nightscout? I had that same problem, there was no possible way Dexcom alert would wake me up. Instead, nightscout is quite noisy and it DOES wake me up whenever needed. I believe there’s no option for DIYAPS yet for Omnipod, but I´m sure they are very, very close.

I usually travel a lot because of work, and have had no trouble sharing my Dexcoms readings (my husband is always watching lol) so unless there´s no internet availability you shouldn’t have any trouble.

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Caleb is currently 14 (well will be this Sunday), was diagnosed 10 years ago and is otherwise independent.

Sorry to hear about your son’s recent diagnosis. I remember the first year - it’s a tough one, indeed.

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Hi, @Mariana11. We were Nightscout users until Dexcom went mobile. I ran both concurrently for a bit, but it was too much work. That was when everything was corded up. I am having trouble remembering the alerts. What exactly is alerting for you? I seem to recall my computer’s alerts being loud, but Caleb would not have used that. Hmmm…

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First of all, congrats!!!

Of all the other considerations you have, my highest recommendation to you is to find one person over there with him that is his guardian angel. That person has the Dexcom share running and is the person you trust with his life. And they know all the stuff, but most important how to wake him up and get him to drink juice if he needs it, and how to give a glucagon shot. Find that one person.

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  • When you buy an international plan, make sure it includes data for the Dexcom (it is not using a lot)

  • Most likely, the critical moments will be at night for him. It might be a good idea to check on wifi service where the accommodations are. With wifi there is no difference if he is Intl or Domestic, as far as the Dexcom Follow is concerned. I travel abroad a lot, and wifi quality varies widely. Milan has better infrastructure than a lot of Italy, so it is more likely for him to have good wifi access at night there, but it still largely depends upon the accommodations.

  • If it was me, I would contract with an international travel insurance that repatriates people by plane in case of significant health trouble. It doesn’t cost much, relatively speaking. I use Travel Guard but there are many others. In Europe, I understand Europe - Assistance is pretty good.

  • I have been intrigued with #DIYPS as well, and will probably get into it in the next few months. But, as an engineer, I would very hesitant to rely on such technology in less than stable circumstances such as a trip abroad: too many moving parts when combining the two to be able to manage risk, particularly early on. But that’s me.

I have asked multiple times about it. The Dexcom people don’t say a word. Distributors are talking about Q1-Q2 this year, with no guarantees (that was as of Q4 2016).

We have no experience with pump. But I have thought about it a lot, and your solution is what I would do if I had my son go away for a long trip. It seems to me it is much more forgiving. Again, others are more qualified.

Hmm. We use both hard candy (skittles) because it’s easy to count them, and soft dried fruit (dried pineapple, dried papaya etc.). When we need BG to rise fast, skittles are a bit faster. However, hard candy has a tendency to become sticky in high temperature. The problem with dried fruit is that it leaves sugar on the fingers that handle them, so, unless they are very careful, their finger pokes can get messed up. My suggestion would be glucose tablets in tubes (4g per tablet) - they don’t melt and they are easy to count and carry. Unfortunately, my son does not like any of them.

In addition:

  • I would investigate accessibility to fridge storage and ice where he stays.

  • I would definitely consider using a Frio bag for insulin. Milan climate is very moderate, although it can get hot in summer, but not high humidity compared to Texas. So I am thinking that Frio would work well there (works better in low humidity). Caveat - the Frio bag ideally needs to be able to be exposed to the outside - much better than inside a carry bag. One solution is to velcro it onto the outside of a carry bag, or to have it held by shock cord (that’s what we do). Some others who have a lot of experience with Frio may want to pipe in?

  • I would make sure he has a travel letter, and an extra prescription (although the latter will probably not help).

  • I would investigate with the US consulate in Milan about an American pharmacy there. Unlikely though.

NOTE: EDITED a couple of times

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My phone, and tablet (when asleep) both alert, plus Dexcom but there was no possible way :frowning: He could set up a tablet next to his bed to wake him up, they are extremely loud.

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Thanks for taking the time to respond so thoroughly. Having just been to Italy this past summer, and our experience traveling to other places, the Frio pack is a good idea. We’ve used hotel fridges that froze the insulin and even after @cynthia_rogers told me about leaving the insulin in a hotel fridge, we did the same in Italy! I find room temperature or frio pack to be a much better option. :slight_smile:

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So Caleb could use his phone with Nightscout. Maybe we should set this back up and see how it goes. I think he just used his Dexcom receiver when we were using nightscout. I don’t think his own phone played into the equation at all - just the extra phone we had plugged into the receiver to transmit the data.

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I am paranoid about that too. The way I do it:

  • I place the insulin far away from the freezer, on a highish shelf, and on the edge of the shelf.
  • I block the fridge door slightly ajar
  • I keep the insulin in an insulated bag in the fridge as well.

But I don’t think using just a Frio bag is a bad option.

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I see, you should have the azure website account, thats the noisy one lol but you could try asking the experts in some of these posts

http://www.tudiabetes.org/group/dexcomusers/forum/topics/night-scout-vs-dexcom-share4
http://www.tudiabetes.org/group/dexcomusers/forum/topics/cgm-in-the-cloud-nightscout-pebble-watch-wearenotwaiting-oh-my3

http://www.tudiabetes.org/profiles/blogs/nightscout-harboring-autonomy-wearenotwaiting-cgminthecloud1

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I can’t see any of these threads. Bad links? Old site?

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I just realized that you’ve referred me to one of my own blog posts! Lol

https://www.google.com/amp/s/thisiscaleb.com/2015/01/23/nightscout-harboring-autonomy-wearenotwaiting-cgminthecloud/amp/?client=safari

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Yes, way to go! It’s so awesome he is going to go on that trip!

If I were you, I would keep things as they are because that’s what your son is most familiar and comfortable with. No need to complicate matters IMO.

I’d not encourage you to pursue a DIY system for the trip. This would require a different pump, and some level of understanding of the system operations and maintenance. As far as tech goes, setting up Nightscout would probably be a good idea, and would be fairly easy to do. In any case, if you need any technical assistance beyond what’s available online, let me know.

Not a problem. Have traveled a lot internationally; everything works fine as long as you have a data plan.

Glancing through the posts above, I do not have much to add. When I traveled solo as a teenager, I had a good friend who was somewhat familiar with what I was doing, who carried some extra juice just for me, and who would occasionally ask me if I felt low. That was pretty much it, and everything worked out well :slight_smile: On that note, on behalf of all T1D teenagers, I feel obliged to tell parents here to calm down a bit. We know how to take care of our D better than anyone else in the world, including you (that’s actually true) :wink:

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I did, some of the replies were awesome, ive been following these for a while, I found them useful when having my nightscout installed.

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@Dragan1, you big teenager you, did I detect some teenage rebellion on your post? :slight_smile:

You are absolutely right I figure. Although, based on my other (non diabetic) teenager, there are quite a few quasi-suicidal tendencies in them also… And the lack of planning, ah!

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Here is a safety suggestion for his OmniPod PDM. I do this sometimes when my wife is out of town.

This is just an example of how you can do something like this.

Let’s say he is supposed to wake up at 7:00 am, and his bedtime is 10 pm.

You have his normal basal program setup, and you have an identical one which is his nighttime basal. (for ease of discussion, lets refer to them as “normal” and “nighttime”). Both of them are 24 hours basal programs, identical in every way, except one…

The “nighttime” basal program drops to the minimum (0.05 units) at 7:00 am, and stays there until , say 10:00 am. Also on the PDM, you have an alarm set for 7:30 am.

Every morning, he wakes up fine-and-dandy at 7:00 am. He then changes his basal program back from “nighttime” to “normal”. Does he forget to change back to “normal”? No problem, the PDM alarm is set for 7:30 am, and that will remind him to change back to “normal”.

At night, before he goes to bed, he changes it to “nighttime”. What if he forgets? Again, there is another alarm set on the PDM, say it is set for 9:30 pm. That reminds him to change to “nighttime”.

So his basal is unaffected by any of this, as long as he wakes up. If he doesn’t wake up, his nighttime basal essentially stops delivering at 7:00 am, and doesn’t deliver for 3 hours. Which is much better than him having a horrible low, and the pod still pushing insulin into him. That’s the safety net!

If he forgets to set back to “normal”, worst case he goes without basal for 3 hours, but he is awake and he will see his CGM start to climb. Plus, the PDM alarm will remind him to return to “normal” basal program.

Does this make sense? Sorry, maybe it sounds complicated. I can try to clarify if it is hard to understand.

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Wow, how exciting @Lorraine! But I agree, a bit scary as a parent.

When we were having trouble with alarms, someone mentioned linking the alarm to some kind of seismic alarm app. Another person mentioned putting the Dex inside a glass so it vibrates. I think maybe the vibrating activates the “earthquake alarm.” If you dig through the archives you might see something on that.

Also, the fact that you’ll be in the daytime when he’s sleeping is possibly an advantage…you are unlikely to sleep through his lows. So perhaps you have a designated contact who you agree ahead of time you will contact (in addition to him) if he’s low and hasn’t responded in 5 minutes. Also maybe let them know that if he’s seriously low and you see no updates within 15 or 20 minutes, you will be calling some kind of emergency personnel. There must be some kind of chaperones or adults involved?

Also, will he have a roommate? I think it would be helpful to know who this person is in advance and see if he can be a backup to the backup to the backup. I wouldn’t trust a teenager to be responsible, but a mature, light-sleeping roommate could conceivably be convinced to shake your son awake.

One cool thing about NightScout is that you can use the Care Portal to log carbs. We can see instantly if someone at daycare has given carbs, and know we can relax for 15-20 minutes while waiting for the sugar to come up. And if you don’t see a log, you can feel justified in pestering people. I guess texting works just as well but we’ve found it easy because you don’t have to actively “communicate”

I agree with everyone about the openAPS…my husband probably has to fix something with it once every two or three weeks and it’s a super pain when that happens. If he’s not even with you and you’re not a coding expert, I imagine debugging could be impossible. Not worth it to try something new.

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I will do my best. He is the only person from his school district going on this trip. Everyone else is new to him. He is one of only two males going. The other is a senior in high school. They will be roommates. 16 kids will have 3 chaperones plus a group leader and a tour guide. I’m hoping as we get to know the parties involved better, I can identify someone who will “have his back.”

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