Positive diabetes type 1

[marymaryquiteaccomodating]

Hi everyone DD aged 11 was diagnosed with type 1 diabetes last week. Still getting over the shock of it all. Shes been an absolute star and has taken it in her stride although we both hit the wall of realisation yesterday after a few days of it all sinking in. Ive joined a few Facebook support pages but find a lot of the posts quite negative. Perhaps thats just because it all seems so daunting for us right now.

Im looking if anyone can share some positive experiences with type 1 diagnosis and maybe some reassurance. Im finding it hard to come to terms with the fact this is for the rest of her life and im filled with worry about her future and all the complications this condition can bring.

My son got his diagnosis in February.

He is in his late 30s and it was devastating for him, and for me actually.

But. The treatment and support he has had from.the NHS has been first class.

And he was determined not to let it interfere with his life more than he could help it.

He has got back into his sports and has run a couple of half marathons.

When he was first diagnosed he found out one of the colleagues he had been working along side long term had been diagnosed as Type 1 at age 12 and my son had absolutely no idea about this because his colleague lived what to all intents and purposes was a "normal life".

So I understand how devastating this diagnosis must appear to you atm OP but honestly there really is a good life ahead for your DD.

The technology and support/information these days is unbelievable compared to when I was diagnosed 20 years ago.

it will take a lot of adjustment but she can live a full and active life

Hi OP. My child was diagnosed aged 5, and I remember that feeling of shock and tbh absolute trauma very well.
Be easy on yourself- it's a huge huge thing, and a lot to take in, while at the same time having to be on the ball and learn so much about T1d and how to manage it.
I promise it gets easier. Try and get on a pump and a glucose monitor as soon as you can, it makes a huge difference.
Your daughter will surprise you with her resilience, and you will surprise yourself with your strength and ability to advocate for your child with those who dont understand t1d (which is a lot of people).
Worry is normal, but that will ease as you learn more and see that she can still live her life as normal with minimum restrictions. Yes it takes work, but it will soon become second nature. You'll be carb counting and bolusing without thinking before you know it.
But for now, sending a big hug, and hoping you give yourself some grace - this first bit is the hardest part.

Hi @marymaryquiteaccomodating. My DS was diagnosed aged 5. He's now late 20's, been through school, university, first graduate job etc. He cycles, swims and rows, has a wonderful partner who understands his diabetes and lives a full and happy life.

I echo everything @SE20schools says. It can be utterly overwhelming at first when other parents are speaking what seems to be a foreign language and all seem so knowledgeable when you are just starting out but you and your DD will get there.

As @Defiantly41 said, the tech is soooo much better these days - no more waiting 30 seconds for the blood glucose monitor to count down and mixing short and long acting insulin in a syringe! If you are offered it, grab it with both hands! The sensor has been life changing for DS. He decided a few years ago to have a pump break and go back on injections and is now on a year long waiting list to be re-assessed for a pump at his new clinic.

I joined the facebook groups straight away too and almost immediately came back off them as it appeared to me that everyone was posting about problems they were having. I found that too overwhelming at a point where I was desperately trying to get my head around what had just happened.

Give yourself time and when things feel a bit calmer rejoin the groups as they're a godsend and you'll find other parents full of wise and informed knowledge and experience.

Also echo that technology is your friend. Nine years in here and the management of Type 1 in that time has progressed so far beyond what I could have ever imagined.

And also another one whose child has gone on to University, holds down a demanding part time job and an active social life. Couldn't even have imagined that in the early stages when everything just seemed so complicated.

The Facebook posts will naturally be about problems as they ask for advice. If things are going well people don’t tend to post. They are excellent groups though and you will learn a lot from them. At diagnosis stage it’s a lot to get your head around. Along with all the natural feels of grief and worry. It takes a good while to get to a place of routine and acceptance. My daughter was diagnosed aged 6, now almost 20, at uni and enjoying life. She’s not had any barriers and has been able to everything her friends did, with just a bit of extra preparation. No complications. As someone else said the technology available now compared to 10 years ago is fantastic, it’s only going to get better. I wouldn’t go reading old information, and also be weary about articles talking about diabetes that may be predominantly T2 which is different. What helped our family was knowing other families, my daughter had friends outside her close network so never felt alone or different, and that’s something I’d encourage as there is definitely a psychological aspect to living with this.