RV vacation with 12 year old diagnosed in january

Hi!! Love this site by the way. I read a lot of these! We are heading out on an RV trip with my fairly newly diagnosed son for a week. We are traveling 1300 miles away, so stops each night basically. Never RVed before, but with Covid 19 we felt this was the best way to get out and make some memories safely and to show our son he can do anything with this diagnosis. Any suggestions or advice. I am nervous, I am overly planning and of course afraid about keeping his extra insulin refrigerated. Open to any advice or suggestions or experiences. Thanks!

He’s not on a pump or cgm yet, but we think our next appt. the day after we get back may be the opportunity. He’s still very much up and down with his number. Somedays I wonder what’s going on, and others he has a completely normal numbers day. We have learned quickly to celebrate the small victories. Thanks for your advice! That’s just what I was thinking as well, making sure we have extra insulin, keeping easy to fix lows snacks, and in general just keeping an extra eye on everything. I am worries about the RV refrigerator, so I was thinking maybe keeping his extra insulin in a cooler.

Have a blast! I’ve never taken a road trip in an RV but it sounds like tons of fun. Here’s a link to some recommended insulin travel cases and mini fridges for you to check out.
Insulin should not be directly exposed to ice, but some do need ice to get or stay chilled. Perhaps of particular interest to you are mini travel fridges specifically for insulin. They might be a little costly but certainly less expensive than paying out of pocket for a new supply if it spoils!
I suggest you ask your doc for an extra rx for all your supplies just case anything does happen. You’re probably using pens rather than syringes and bottles, but it’s helpful to have an RX on hand of you’re traveling in case there are any questions if you do use them, and for insulin, meters and strips as well. Unlikely, but it’s good to be prepared, and have proof of diabetes if you need syringes (if that’s what you use). There’s a nasal form of Glucagon called Baqsimi. No need to mix solutions with shaking hands as with the old fashioned Glucagon kits so it’s easy to administer. Hopefully you won’t need it but it’s good to have something on board just in case.
Don’t forget to take spare batteries for your meter. Most use watch batteries which are easy to find, but who wants to interrupt a beautiful drive to run to the store😫. I suggest taking an extra meter too. At home I have a meter I keep in my kitchen and one I carry with me. I take a spare when traveling and keep one with me at all times.

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Hi @Squarenugs104 welcome to TypeOneNation. The insulin you’ll need for the vacation won’t really need refrigeration. I keep working insulin out of the fridge and it’s good for 6-8 weeks out of the cold. How long are you going to be on vacation? I would protect it from sunlight and if the RV gets very hot, maybe an insulated bag like a sandwich bag to protect from temperature above 90. You’ll be fine.

Insulin is good for 3 days at 100F (against your body in a pump)

Insulin is good for a month (or more) at room temperature (65-80F approximately)

Insulin is good until expired in a refrigerator (40F). Cheers have fun!

Hi @Joe. I was just thinking about times they would be out of he RV and exploring the local sites - vehicles do get extremely hot, and since that is way above typical room temp I was thinking a small fridge would be a good idea as a backup in case anything does happen to the on in the vehicle. True, many if not most people do keep their active bottle or pen at room temp. “Serving my insulin chilled” is just an ingrained habit from years gone by.

Thanks so much!! I didn’t even know there was such a thing as an insulin refrigerator or insulated bag for insulin. Your correct he uses pens. One pen, depending on corrections usually lasts 5-6 days, sometimes longer.
My common sense mind says the pen will be fine because we take it out and keep it out of the refrigerator once we need one, but I am overly worrying, probably for no reason.
The extra batteries is something I hadn’t thought of, so kudos, and definetly going to do that.
We are traveling from Ohio to Colorado. We have never done an RV trip before and I think that’s why I’m so nervous too.
Also, If I may pick a brain or two, there are days when he stays in the 200s, even with activity and plenty of fluids etc.
Then there are days that he has normal numbers and the occasional out of nowhere “low” which isn’t really low but it’s low for him. For example, tested at 238 for lunch, at dinner he was 101. I know 101 is normal but he rarely goes that low, luckily we haven’t had to deal with him going too low at all.
What are your thoughts on this phenomena? Is this normal for newly diagnosed this far into it. I mean it was January when he was diagnosed.
Our insurance switches us back and forth from Humalog one month, Lispro the next, which I think is wierd. Doesn’t seem to be a noticable difference though.
He is on 23 units of Lantus at bedtime.
1:7 breakfast
1:7 lunch
1:8 dinner.

Hi and thanks! We will be gone for a week. I didn’t know it was good for 6-8 weeks!! Nice to know!!!
We are really trying to show him he can do anything with this diagnosis. Since we came home, and covid 19 didn’t help, he hasn’t wanted to do much other than staying safe doing things here.
When we told him we were taking an RV trip, I could see him worrying already and I hate it for him. I hide my anxieties so it doesn’t affect him and we are hoping after our big trip he will feel more empowered that this diagnosis will not hold him back from anything he wants to do in life.
Thanks for your thoughts and advice!

Keep on encouraging him. Covid has made things challenging, but people with diabetes can carry on, with caution. There is a saying I hope he will be able to adopt with confidence, “I have diabetes but diabetes does not have me.” It’s scary knowing things that could happen - especially low blood sugars - but hopefully he will find himself growing more confident as time goes on. If it helps him any, some of us came along before we even had BG meters, much less CGMs. We had to rely on our physical senses to recognize signs of lows (and highs). There are lots of options for raising blood sugar quickly - I was told that liquids work faster than solid foods, but juices and sweet drinks will give a sharp rise that won’t last. I’m probably telling you things you already know - he will continue to learn to recognize things and perhaps have a CGM as a tool to help him, and he’ll know what to do. The trip can be good practice for his return to school - however that looks with Covid. It’s good to learn to manage things away from home (even if you’re in a different, moving home for a few days).
Here’s the thing: with diabetes, things happen. The key is learning to manage them, and he’s learning at his pace. If no one has suggested it yet, before he goes back to school have a 504 plan in place (I believe that’s the correct name) letting the school know that he he has diabetes and may need to have a snack or eat lunch at times that don’t mesh with his schedule; and he may need to do a fingerstick or check his CGM (no, he is not playing with a video game). And it should have guidelines for his insulin, of course. That is not an exhaustive list and there are parents on the forum who can give you advice on what should be included in the 504. You might also contact the school to see if there are any other students with diabetes. HIPAA probably prevents them from sharing their information with you, but they may be able to share your info with them. It can be reassuring to know you have a pal.
If you do an online search you will find there are lots of famous people with diabetes, including professional and Olympic athletes; some actors and musicians such as Nick Jonas; as well as Supreme Court Justice Sonya Sotomayor. It will take some time for him to adjust, but his diabetes does not have to keep him from living a full life.

Kids are the personification of walking, thinking, “lie detectors” :wink: please no offense meant! … you can’t just say it you have to believe it through and through!

@Squarenugs104 Tell him that right now, a “diabetic” is working on a covid vaccine, tell him I am on a team of over 500 people, staying up nights and working weekends to get 4 sterile manufacturing plants running by this Fall! Tell him not only can he do anything he wants, but that the things he can do, may have meaningful and powerful impact to his family, his town, his state, and his country, …if he wants it. Tell him that I said nothing good is easy, even less is easy with Type 1… but you either give up or it makes you tough like steel.


Thank you for this Joe. I read it to him word for word. Well…except the lie detector part …LOL
I knew what you meant by it though.

When I read it to him, his eye brows went half way up his forehead and he was amazed at what you are doing and accomplishing and that you thought of him enough to want me to tell him those things.
Sometimes people can touch our lives without even knowing it. Thank you for what your doing and thank you for your sentiments to him.
Even if it only plants a seed, we will make sure with grows.

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Agree with other comments. Make sure you are always stocked with supplied. I would add get a prescription for Zofran in case you have a symptomatic day that involves nausea. We always have some on hand. We have used this with my daughter when traveling. Eating foods on the road can present carb. counting challenges. If we didn’t get it right and she went high she is usually very nauseated. No fun to treat a diabetic when they can’t keep food or water down. Have Fun!

One thing that you could consider if power failure is an issue is to get portable power pack (such as yeti 150) and a DC 12-volt fridge (such as Dometic CF18). That way you would be able to keep the insulin cool during a power outage and would also have stuff which could be moved into a van. This is what I used when I was car camping in my Prius last year and it worked fine.

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Have fun!!! Take extra supplies, that includes quick sugars for lows. And if you give him insulin and it doesn’t seem to work for a couple of shots, try a different vial. Heat will affect it and it won’t work. We have that happen, even in the pump, every once in while. And…HAVE FUN!

Thanks so much for all the great advice and responses!!! We are counting down, 5 days left until we leave!! I got an insulin refrigerator too for our extra insulin, wouldn’t have thought of that without this forum!! Lots and lots of great advice!!
Thanks so much to everyone!! You guys are awesome!!

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Hi. I have had T1D for 40+ years. We’ve traveled all over the US and Canada in our RV. I use Frio cases to keep my insulin cool. Just google Frio. The Frio cases can be small or larger enough to carry pens or syringes too. I carry bags of Kellogs or Welch’s fruit snacks. About 5 pieces is 10 g of Carbohydrates. I tend to use less insulin when I’m camping because I am out walking/hiking/swimming. I use a pump and a cgm to watch my glucose levels. You should make sure you have plenty of finger sticks.

We use Frio too when we are out and about in the heat. They don’t keep it cool like a refrigerator but keep it from getting hot. Your insulin should be good at room temperature for 4 weeks but I would personally not stretch it to 6-8 weeks. Some may be good that long but it depends on what type of insulin and what conditions it is stored in. Sounds like a great vacation and adventure so enjoy!

Hi Traci, I was diagnosed at the age of 9 and if I don’t remember anything else, i had a Dr tell me that theer wasn’t anything I couldn’t do as long as I did it correctly and I just celebrated my 75th birthday. I have always refrigerated my insulin and I used a thermos when I was out, make sure you have supplies on hand, Ie: glucose tablets, syringes if needed. Update; Check out “Evo Pump” not on the market yet but looked fantastic for kids, I love my Omni Pod pump it is tubeless and wireless, you might want to check it out, also my Dexcom CGM, makes life easier. One thing you should know, don’t know if this is t rue for everyone, but if I get too hot my blood sugar drops fast. so you might want to check his BS often if it’s warm, I; have never forgotten my Docs advice and that is how I live my life. hasn’t failed me. Hope this helps, have a sfe and great trip. bye Jan

Frio works really well to keep pens cool even in extreme heat. There’s also a device you can put inside the RV fridge to monitor temp - it alerts your phone if approaching freezing. Also I saw an interesting video on putting insulin inside tupperware in the fridge, it cuts way down on temperature fluctuations. Have fun!

After hearing what you guys have said about Frio, when we get back I’m going to order one. We go do a lot in the summer, so we can definetly use it other than this trip. I wish I would have had time to order it beforehand though but it’s ok. I love this community, thanks again for all your ideas and thoughts!! I have taken every one of them into consideration! We aren’t nearly as nervous as we were before. Countdown is here, we leave Monday!!

We have been home for 5 days now from our big RV trip. We stayed in a different state each night! It was amazing and most importantly my fairly newly diagnosed son knows for absolute sure that NOTHING stops him from doing whatever he wants to do in life. He hand sifted through mineral.bags at a mine, he got to see the beautiful rolling hills of Kansas that are underrated and breathtaking!! He got to experience a dry heat instead of humid heat and see what a desert environment was like. We made so many good memories! Our Great Dane, Fiona, got to meet a new dog friend and play until she couldn’t play anymore. Most of all, he now knows, we can do anything. Plus, to anyone wondering the RV refrigerator kept our insulin perfectly fine and I was freaking out for no reason. Lol Thanks everyone for your advice and suggestions! We have been referred to Dexcom for his new cgm, his Endo stated that she wants him on a cgm for a few months before adding a pump to the mix, which we all appreciated.
Thanks again everyone!!!

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