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New and overwhelmed

S

Seamsamp25

New Member
Relationship to Diabetes
Type 1
Hello all, our son is newly diagnosed type 1. He is severely autistic with associated complex needs, he is 26, cannot advocate for himself or express how he is feeling, essentially he is a very young child with an angelic personality. We have just returned home from a four day, 3 night hospital stay where he was diagnosed, he was seriously ill on admission with a HbA1c of 133 and his ketones were 4. We are overwhelmed with guilt and worry. I do know it will become another part of our daily life and in time we will get a handle on it. My husband already has a handle on it but I am finding it difficult to process. We had taken him to the GP the week before, there was no urgency or rush, by the grace of god our parental intuition saved him. I hope all of this post is acceptable, we have so many a questions. Thanks for reading.
 
Welcome @Seamsamp25 🙂 Sorry to hear about your son’s Type 1 diagnosis. It’s not easy at the best of times, but his additional needs must add to your stress.

A few things: first, totally get rid of the guilt - it’s not your fault in any way. In fact, you should be proud that you used your instincts and took him to the GP. Type 1 is an auto-immune condition and just bad luck, not your fault at all. Secondly, it does gradually get easier. The first weeks are a whirlwind of stress, anxiety and pressure, with all the practical stuff to do feeling overwhelming, but this will ease. You’ll gain knowledge and experience and the Type 1 will slowly become less at the forefront of your mind.

What insulins is your son taking and does he have a Libre?
 
Thank you Inka, he was symptomatic for a while but his health has always suffered and we assumed this was the case. He has a libre, the insulins are Toujeo-8 units daily and Fiasp - 4 units 3 times a day; as you will know this is the beginning and they will increase the units. We are also learning about correcting and tweaking accordingly. So many questions, we are travelling to America and staying there for nearly 8 weeks (our daughter lives in NYC). We are thinking of things like an ice bag for medications, which is the best one and what else we should do?
 
It’s easy to dismiss the symptoms of Type 1 as something else. I remember thinking I must have a virus or be anaemic. I think that’s very normal.

Insulin that’s in use stays out of the fridge and lasts for around a month as long as it’s not exposed to extremes of temperature. Ice packs can cause damage if they’re in contact with insulin, so be wary. You can use Frio wallets for spare insulin. I’ve always used them and they’re very popular:

friouk.com

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If he has disposable pens, try to get him swapped to reuseable pens. They’re better quality and it’s much easier to carry cartridges than additional pens. Take at least twice as much insulin as you think he’ll need, and twice as much of everything else too, eg sensors, testing strips, etc. Also ensure your travel insurance covers pre-existing conditions. I use All Clear, which I found out about via Diabetes U.K.:

Travel Insurance With Pre-Existing Medical Conditions | AllClear

Don't let pre-existing medical conditions get in the way of your trip with our Travel Insurance. Learn about medical travel insurance and secure a quote today.
www.allcleartravel.co.uk www.allcleartravel.co.uk

As well as learning about correction doses, hopefully you’re learning about carb counting. This is crucial for good control. It also means your son will be able to be more flexible with his meals @Seamsamp25
 
I’m wondering if your diabetes clinic would consider prescribing a pump for your son, with his additional needs it may relieve some of the stress for all of you.

A note about when you fly to the US, keep ALL his diabetes supplies in your hand luggage. Never in baggage that goes in the hold. One it sometimes goes amiss for days and second any insulin will likely freeze and then be useless. Most airlines allow an extra onboard bag for medical supplies. Check with your airline. Plus I’d recommend getting a letter from your doctor describing your son’s medical needs, in case anything comes up at Customs or anywhere else while away. Might not be needed but best be prepared.

Wishing you all well on adjusting to these life changes.
 
Wow you have been on a roller coaster with your son’s diagnosis @Seamsamp25 but as others have said it does get easier. I know that you are dealing with your sons additional needs already and as you have said this will become part of your new normal.

I echo @counsellorneil ’s thoughts about a pump. I am using a hybrid closed loop system and I am able to think about my diabetes a lot less than when I was in injections. It is worth talking to your team about this. Still some work to do but things can be a lot more accurate in the setting up once they are sorted and then reduce the stress around the management.

When you go to USA do take twice as much stuff as you might possibly need. If you are staying in a hotel do not trust the fridges. My insulin got frozen in one hotel and we had to spend a day getting new stuff before continuing on our holiday. Insulin in a frio bag works well or I carry mine in a thermos flask which has been in the fridge before use. I label this ‘medication -do not move’

At airports it would be worth using a sunflower lanyard but you probably do this already for your son’s other needs. This can reduce the wait in queues and often the staff are aware there that may be different issues so make a lot less fuss over things .

You mention that you have lots of questions. You are in the right place then. There is a wealth of experience to tap into on here. Just ask
 
Insulin should last for a month unrefrigerated and at room temperature. As you're going for 8 weeks I'd try to keep some insulin reasonably cold while you travel (i.e. use a coolbag with some icepacks/ice from the plane (take a plastic bag with a clip into which to decant new ice)) and then stick it in a fridge when you arrive. Don't accept offers to have it put in a fridge on the plane, you don't know what temperature it will be run at.

Frio wallets work using evaporative cooling so don't get particularly cold, but are apparently effective if you're somewhere hot and dry and have no access to ice and want to avoid damage due to high temperatures.

In my (somewhat limited, I gave up using one after my first trip and have spent the subsequent 30 years using a coolbag + ice) experience of the Frio, it won't work very well in a closed bag (e.g. in the overhead locker) as there's nowhere for the water to evaporate to.

P.S. I also take ice and icepacks through security - the worst that might happen is they want me to taste the ice, or even throw it away (though I've never had these happen). I can live with that, and then go and get some more ice at a bar/shop inside the airport/etc. As I use a dedicated coolbag I take that out and stick it in the tray alongside my transparent plastic bag containing any other liquids and tell the person on the X-ray desk I'm diabetic and there's insulin inside the coolbag.
 
[The Frio] won't work very well in a closed bag (e.g. in the overhead locker) as there's nowhere for the water to evaporate to.

Yes, that’s right. That flummoxed me to start with but fortunately while I was looking for a medical travel bag to take in addition to my handluggage, I found a great one with an outside mesh pocket specifically for the Frio. I’m pretty certain I got it from the Diabetes U.K. shop but can’t see the exact one I got. However, the mesh side pocket of a rucksack would do too.
 
I still don't think it would keep it cool enough to prevent the "30day timer" starting to tick, my preference has always been to keep it closer to refrigerator temperature.
 
SimonP said:
I still don't think it would keep it cool enough to prevent the "30day timer" starting to tick, my preference has always been to keep it closer to refrigerator temperature.
Click to expand...

I always mark my insulin so I know it’s been on travels @SimonP I then either use it first once home or discard anything that I feel has been compromised. I keep my Frio activated on trips and haven’t had any problems. I’ve used ice packs before but found it a faff and a nuisance to have to keep refreezing them. It’s whatever suits the person and the situation 🙂
 
Inka said:
I always mark my insulin so I know it’s been on travels @SimonP I then either use it first once home or discard anything that I feel has been compromised. I keep my Frio activated on trips and haven’t had any problems. I’ve used ice packs before but found it a faff and a nuisance to have to keep refreezing them. It’s whatever suits the person and the situation 🙂
Click to expand...
I do likewise re marking insulin and using it first. I agree that icepacks are a faff, I only use those if I know there's a freezer where I'm going otherwise ice in a plastic bag works well, especially in the US where there's free ice in hotels from ice dispensers.

To sum it up for the OP, there are options, we're all different in our preferences 🙂
 
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