New and overwhelmed

[Seamsamp25]

Welcome to the forum @Seamsamp25

Sorry to hear about your son’s diagnosis. As a parent it can be perfectly natural to feel guilt and worry - but as @Inka has said, T1 diabetes is just bad luck, and you did well to trust your parental spidey-sense.

Hope your trip to the US goes brilliantly. +1 for the Frio. Though generally if there’s a (not too cold) fridge wherever I’m going, I just take my insulin buried in hand luggage, and put it in the fridge as soon as I arrive at the accommodation. But watch out for hotel fridges, in case they are set super-cold and could freeze the insulin rendering it useless.

In terms of getting your head around his T1, you might find these books helpful - they are very well regarded on the forum:

Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas - as relevant for adults as for children!

Think Like a Pancreas by Gary Scheiner - A practical guide to managing diabetes with insulin

You might also want to register for the excellent Learning Zone (orange tab in the main menu), which is packed with bite-sized modules you can take at your own pace.

Good luck, and keep asking questions.

Thank you

 

[Lucyr]

Yes, she has a fridge and it will be in the fridge on the journey there 🙂

Your cabin temperature on the QM2 at sea won’t be over 26 anyway so it will be fine. Insulin is fine out of a fridge for a month (actually fine for many months, it’s just that 1 month is all that’s formally tested and proven) sounds like you’re just nervous and panicking about it.

 

[Seamsamp25]

We are most definitely panicking, he is a child who does not understand and is unable to express himself in a meaningful way. It's all new and scary for us.

 

[Inka]

Have you tried the National Autistic Society for support @Seamsamp25 ? There are a number of people with autism who have additional medical issues. It might be that they have advice that would help a little. There was someone here a while ago who had a child with autism and Type 1, if I’m remembering correctly.

BreakthroughT1D (formerly JDRF) have a little bit of basic information:

Autistic adults and type 1 diabetes | Breakthrough T1D UK

Read information for autistic adults living with type 1 diabetes about how it can impact your T1D management.

breakthrought1d.org.uk

 

[Seamsamp25]

Have you tried the National Autistic Society for support @Seamsamp25 ? There are a number of people with autism who have additional medical issues. It might be that they have advice that would help a little. There was someone here a while ago who had a child with autism and Type 1, if I’m remembering correctly.

BreakthroughT1D (formerly JDRF) have a little bit of basic information:

Autistic adults and type 1 diabetes | Breakthrough T1D UK

Read information for autistic adults living with type 1 diabetes about how it can impact your T1D management.

breakthrought1d.org.uk

I haven't yet but I will. It is difficult with autistics, there is no yardstick by which to measure if you see what I mean.