This is very good advice. I agree that keeping things familiar is a good idea. Here is my concern however - Caleb is great at his care in the normal routine, with the exception of overnight. Not that he does a poor job overnight, but that he’s simply not awake at that time. When we went to Italy this past August, I was able to keep his bgs in pretty decent range, but it took work. I got up multiple times a night to set and reset temp basals, give corrections if needed. I was pretty much sugar surfing. I don’t know how to handle his bg is this circumstance otherwise. With so many variables, I foresee his bg getting dangerously high - not undesirably high, but dangerously high. Trying to compensate with insulin makes me nervous, again bc of the new environment and not knowing what would be appropriate dosing and therefore the risk of going low. So the idea of Looping is appealing to me.
By technical assistance, do you have a specific area of expertise, or are you just a general tech wiz? I find your offer of help appealing.
Yes! This is definitely a plus, even if I have to call the front desk and have them dramatically barge in![quote=“Tia_G, post:19, topic:58785”]
Also, will he have a roommate?
[/quote]
He will have one roommate - a senior in high school who is going to Brown University next year. I’m hoping he might be a nice young man willing to intervene if needed. :)[quote=“Tia_G, post:19, topic:58785”]
you don’t have to actively “communicate”
[/quote]
Yes, I remember this being amazing for his school nurse to look on.
[quote=“Tia_G, post:19, topic:58785”]
my husband probably has to fix something with it once every two or three weeks
[/quote]
It’s not really about sleeping in. It’s about making sure that if he doesn’t wake up because of a hypo, at least you know the pump is not still pushing insulin.
So the idea is simply that if you wake up, you are okay, and you start your normal basal program. But if you are still asleep, maybe it is because of a hypo and you didn’t wake up. In that case, the basal program is set to drop to the minimum value, which helps you recover.
The most dangerous time is when you are asleep. This is a preemptive reduction in case Caleb doesn’t wake up. As long as he wakes up, he’s fine, so he resets back to normal.
There is actually another way to do this also. You would just have a normal basal program that is set to almost 0.0 unit in the early morning, for a few hours. When Caleb wakes up, he can set a 2 or 3 hour temp basal that covers that time, from say 7am to 10 am. But if a hypo causes him to not wake up, at least he isn’t still getting insulin.
Understand the concern. But you can monitor his bg remotely, and if things go wrong for whatever reason you will be able to alert your son to take action. Correct conservatively so he stays away from dangerously high levels, but still safely away from lows. I know, this is easier said than done, but one has to accept the fact that there are no 100% fullproof solutions. In a similar situation, my top concern would be a dangerous overnight low, say due to a grossly overestimated dinner bolus, or a bolus/skip-meal situation. Please note that closed-loop systems or any other temp basal schemes would not be able to help much in such rather extreme and highly unlikely scenarios. As a backup, you may have two different people available to respond to your call and check on him if need be. On a more positive note, I think your son will very much enjoy the opportunity to be on his own and impress you with his D management skills.
If you wanted to go that route, I think you would have to start early so that you and your son can get into ins and outs of looping well ahead of the trip. Keep in mind DIY systems are not products backed up by warranties and tech support.
Well, the bar for “tech wiz” is pretty high in my mind, so no I am not one of them However, I do have experience setting up Nightscout and DIY closed-loop systems (OpenAPS, Loop), which I’ve been using for more than a year now.
If you are still leaning towards setting up Loop, I would say that the actual Loop app is way easier to set up than the traditional openAPS rigs. You could run it just at night, for instance. If it breaks, you can just not use it.
Hi Lorraine
Well done on letting him go!
Way too many times i have seen parents too scared of letting go…
When will Caleb be going on this trip?
I live like 3 hours from Milan, so if I am around I will be glad to be there in any case of emergency (which of course won’t happen), but if that gives you peace of mind, feel free to involve me in any way
Many others have given great advice, especially if you are going to consider some type of APS.
I went on my first Europe trip, sans parents and post-dx, exactly 9 months later. I was 17, and had the benefit of caring for my own treatment for most of those months.
So, my best suggestion, after hearing you voice repeatedly that Caleb does great with his normal routine except overnights, is for you to spend the next few months helping him care for any overnight issues. Try to progressively get him more involved and become less hands-on as parents. If he doesn’t typically wake up to Dex’s low alerts, text him, if he still doesn’t get up to care for it call him. Working him up to that level of alertness, while within the safety net of your own home could be life saving. Does he wake up to typical alarm clock alarms from his phone? If he is sleeping too soundly to wake up to Dex, then sadly the answer may be to interrupt his sleep the way it has most likely interrupted yours for the last decade and will possibly interrupt his until we have a cure. Have him set alarms on his phone to wake him up at 12, 2 or other random times and check his bg either on dex and record elsewhere or with a meter. This will help train him to wake up to middle of the night alarms.
I also second the idea of figuring out someone on the trip that you could possibly meet beforehand, that can have Caleb’s back. A year after that first trip, I studied abroad in Europe with a friend from my University. One of the first things I discussed with her after we both found out we were going was how to give me glucagon. Those poor little oranges that sacrificed themselves for that lesson. Knowing one person knows how to notice a low or administer that emergency shot, will give you ALL peace of mind.
Good luck! And I hope Caleb enjoys this experience.
I have this same issue. However, I will say that when I travel, I do tend to wake up more than when I’m at home. I think the novel environment helps, as well as the fact that a low would (somehow) be more serious while on a business trip than at home.
I have found that putting my Dexcom under my pillow helps. Not beside the pillow, but actually under it. (Note: I"m using the Dexcom receiver.) When it vibrates/beeps, it vibrates the entire pillow plus sounds very loud since it’s essentially right underneath my ear. It doesn’t always wake me up, but I’d say over 50% of the time it does, which is more successful than anything else I’ve tried.
I also agree with suggestions to get Caleb involved in overnight care. It sucks to wake up in the middle of the night, and I hear of many parents who simply take care of waking up and treating highs and lows without disturbing thier kids. Which is great! But it does nothing to train the kids to learn to get up themselves. As a kid I didn’t have modern insulins or CGMs, so it was usually me who woke up for lows and then (if needed) woke my parents up. I think I would find it even harder to wake up at night if I’d just been able to sleep through it all until I was suddenly expected to wake up on my own and deal with everything. I’d definitely do that at home first before expecting him to do it while on a trip.
Not so much related to treatment but related to “worse case” scenarios (i.e., some sort of medical emergency developing): does Caleb have a MedicAlert bracelet (the brand-name one)? I recently got a new bracelet and went back to MedicAlert after several years with a different company. I really like that MedicAlert allows me to add emergency contacts and additional information to their hotline, which I wasn’t able to do with the other bracelet. The emergency medical contacts gives me huge peace of mind when travelling, and it works in something like 150 countries and languages. I also have four potentially life-threatening medical conditions and two medications I want on the bracelet itself. So my bracelet is literally jammed full and MedicAlert is great about helping you find ways to fit so much information, if help is needed. And anything that can’t fit on the bracelet itself but is still important can go in the file accessed through the hotline.
Good luck!! Sounds like an amazing opportunity and I’m sure everything will go well!
Absolutely. It’s so very easy now to stay in touch with texting and dexcom share, it takes a real effort to cut the cord. We have first changed insulins, now are getting settings refined for Loop, and then will continue to pass things on to him to do by himself until he’s doing it all. [quote=“Jen, post:30, topic:58785”]
I hear of many parents who simply take care of waking up and treating highs and lows without disturbing thier kids. Which is great!
[/quote]
We value sleep. I value sleep. Kids need to sleep and I will continue to be in charge of overnights for Caleb for as long as I am able. But I cannot argue with the fact that me doing it is why he is not prepared to. It’s absolutely part of the plan to simulate the experience here at home and figure out what will work. I like how @whoiwasmeant2be06 spelled it out for me - text him from my room!
He does not. He has lots of different forms of ID, but not this one. He’s really a pain about wearing his IDs, but this will be nonnegotiable for this trip. Thanks for the tip. I will look into it.
I appreciate all the feedback! Keep it coming. Still three months to get our ducks in a row and it’s so helpful to hear everyone share their experiences!
