To ask for a handhold? Toddler just diagnosed with diabetes.

[octoberfarm]

I just had to say goodnight to my very tearful two year old who just got diagnosed with Type 1 Diabetes, after a day spent in ERs and children's wards filled with tests and needles. DH has stayed with him but I had to go home to sort out the dog, but I feel so awful leaving him and I'm now 1.5 hours away and really struggling. I'm 35 weeks pregnant as well, so think it might just all be getting on top of me a bit now it's late at night. I know it could be so much worse, but I'm really scared and tired and just so...sad for him.

Trying to sleep but nothing's coming, so wondered if there was anyone out there who could offer some positive stories of Type 1 Diabetes (diagnosed early or in general) or any insight into how it might affect our (and more importantly his) lives/life moving forward? Right now it's just a lot of tests and not a lot of answers, although we should learn more tomorrow. He's just so sad and in pain, and I feel so helpless.

I imagine this is a terrible shock.

Wanted to offer some reassurance.

My dc’s friend was diagnosed at the same age. Today he is an amazing 11 year old who self manages his diabetes.

Technology and research is moving fast.

He has a device on his arm which means no finger pricks. He simply holds a remote contorl to it and gets his reading. If he needs insulin (depending on the reading) he fiddles with a pump he wears and it delivers the meds via a needle implanted in their stomach.

This is a very layman’s decscription but I just wanted to show you that the techniques for getting the readings and meds is changing.

Not sure if those methods are suitable for a newly diagnosed toddler.

I have to also say he is a fab kid. Does not let anything stop him and makes no fuss or drama. Just gets on with it. He told me that he thinks an early diagnosis is easier as you know no different. It is just you and how things are. He has no negativity or self pity - does not see the need for it.

Life will go on. Life is bit fair and I think you may need to grieve and adapt but it is going to be ok. You and dh can do this. And remember by showing no fear or anxiety (hard I know) your little one will follow your cues and take the same attitude.

So sorry to hear that. My son was diagnosed at 5 and it feels like a bereavement at first, you're kind of grieving for the 'normal' life he could have had.
Having said that though, 10 years down the line he's absolutely fine - leads a full, active, happy life, deals with everything very independently and doesn't let his diabetes hold him back at all.
The next few days/weeks are going to be a steep learning curve for you all but you will get through it. There's some fantastic support out there - take all of it.

Oh gosh that's so hard :( I'm not surprised you can't sleep. The other posters are correct saying that technology and treatment has come along an incredible way in the U.K. A close friend was diagnosed at age 8 or so thirty years ago. It was a huge shock and adjustment for the family but today she's a brilliant GP with two children and the diabetes is a small part of her life.

My brother was diagnosed in early childhood over 30 years ago. It was shocking and scary but within a few weeks we were off on our pre-booked holiday and life was going on. Treatment, technology and understanding have improved so much since then. Some of the new technology is amazing and there are constant developments and improvements.

It's a cliche but he has never let it hold him back. Diabetes doesn't define him at all - most friends and colleagues are aware but probably forget most of the time unless they see him do a blink-and-you'll-miss-it blood test. He has first-class degrees from some of the UK's top universities, is very high-achieving professionally in a competitive creative field, has travelled lots and lived overseas, has loads of friends and happy relationships. He's incredibly sporty, cycling across Europe, doing triathalons etc. From an early age he was encouraged (in an age-appropriate way) to understand and manage his diabetes as independently as possible and he thinks that helped.

Diabetes UK or the hospital willl be able to put you in touch with other families/kids/adults who have gone through/are going through something similar (though every child and circumstances are different).

Hi there,

It's a terrible shock. I know what you're going through - my son was diagnosed almost 2 years ago under dreadful circumstance.

As someone said above - you will be in a period of grieving and shock. I can't imagine how this will be compounded with the fact that you are pregnant.

You have A LOT to get your head around, and it will seem like a minefield at the moment but you WILL get your head around it. At some point in the stages you'll go from panic and fear and grief and sorrow to days when you just get on with it. I promise this hurt will diminish. We all still have our days though.

In the meantime, be kind to yourself. Take it one step at a time. Hopefully you'll get all the support you need from your paediatric unit. I am in Glasgow if you are near by. There a loads of support groups on FB - I found this particularly helpful when I had question but no access to the DSN (Diabetic Specialist Nurse) in the evenings - there is always someone around no matter what time it is.

Please please PM me if need ANY help with anything. My heart aches for you at this time xx

Hi OP I really didn't want to read and run. I was diagnosed with Type 1 Diabetes at 16. I'm now 35. Whilst it was a huge shock I adjusted much more quickly than I thought and since my initial diagnosis I have never been back to hospital because of my diabetes and I am in really good health. I can honestly say my Diabetes has never held me back - I left home to go to Uni at 18, I have travelled extensively - even living in Africa, South America and Asia, I've run marathons and last year I gave birth to my DS I'm not going to pretend it is always easy - planning is key - making sure I have all my diabetes kit and a snack at all times. Things have improved so much even in the last 10 ywars - the technology is hugely improved. Insulin pumps and continuous glucose monitoring have revolutionised treatment. Honestly most days it us like brushing my teeth - it has become second nature to test and inject. I know how worried you must be - when I was 16 it seemed like I had just been given a life sentence but I promise this is the hardest point. One thing I get asked is does it hurt and I can imagine you are dreading hurting your child with tests and injections. I promise it doesn't I don't bad an eyelid these days! Best of luck to you and your DS - this is probably harder for you than for him. He is so young that this will all become second nature for him soon. As a previous poster said make use of your diabetic team and all the support networks - they have been invaluable to me. Hugs - I"ll be thinking of you and your son x

Oh and my son is happy and healthy and takes part in everything. He has his diabetes sucks moments but we don't let it hold him back. It's difficult not to define him as my son 'the diabetic' so I'm working on that. But he's fine despite the fact that we nearly lost him. You will all be fine too x

Type 1 diabetes is so much easier now than it ever was. The technology they have to monitor blood sugar is unbelievable. My cousin's child has type 1 and doesn't has a device inserted under her skin, a teacher or parent just has to beep something over it to read her blood sugar. For her child it really is just another part of life now - she doesn't think about it much and when she does actually loves explaining it to people.

I take care of a little one with type one. They are amazing! The parents have found things tricky sometimes but the support of the nurses is excellent- helping answer any queries. Yes there will be things that you'll need to learn and become familiar with for their health, but with some time it will soon become normal for you and your family. There's lots of info you be found on Diabetes Uk- anything from meal ideas to sports and activities and school residentials. Overwhelming i know but you'll soon feel better about everything.

Good luck to you all, and these for you

for you OP. It's a shock. But it's going to be OK. You have an overwhelming amount of learning to do in a short time, but it will quickly become part of your routine, and your little boy is young enough to adapt and not really remember anything different. Research seems to be developing fast and the future looks bright for people with diabetes now.

There’s a YouTuber called AmyDreamflight6000

Her (now 9yo) DS was diagnosed with type 1 as a toddler and she has a huge amount of videos from back then (and is still making them) regarding T1 diabeties, I highly recommend watching them, she’s fab

for you x

What everyone else has said - plus, a friend of mine (now in his fifties) who was diagnosed as a kid has said to me more than once that he truly believes being diagnosed with diabetes for as long as he can remember made him (a) more self-reliant and (b) much, much more health conscious and therefore healthy all his life.

He also said recently that the new technology (implants, pumps, etc) have revolutionised how he handles it and his only regret is that it wasn't available for him from childhood.

I was diagnosed when I was 10. I'm glad it happened early and I wish it had happened even early, because it quickly became part of my life. I don't remember any different really, so I don't feel resentment or that I lost out on a "normal" life.

I've had it 20 years and I still have almost perfect eyesight, no complications with my limbs, no thyroid problems or any other issues associated with diabetes.

There are even some perks - I get top notch medical care and they tend to push diabetics to the front of queues to make sure we're seen quickly. We get free prescriptions for life. We're much more aware of our diets that most people (not that we always make the right choices... looking at myself here). We don't drink sugary drinks that rot our teeth.

Since your boy is so small you are likely to get a pump for him too rather than having to inject 2-6 times a day. I spent 17 years injecting and I LOVE my pump. It makes diabetes so much easier to manage.

If you have any questions please feel free to PM.

Type 1 since childhood here. Pain in the neck, but nothing major. Have done it all - three kids, career, travel... feel very lucky and blessed and diabetes is very much “just one of those things”. Good luck to you all. It gets so much easier as you get used to it (a bit like parenting in general!)

Thank you so, so much to all of you who've taken the time to respond, I really appreciate it. Managed to get a few hours sleep and waking up to your stories makes everything feel a lot less scary. I'm originally from the UK but we're living in the US now so I think everything just feels a bit unfamiliar and overwhelming, but I'll definitely take all the support and guidance on offer. Thanks so much again for sharing your stories.

My sons are both type 1 diagnosed at 7 and 5 years old 6 months apart! It is a horrible shock and there is so much information to get your head around at first, I was in my own little world for a while just getting used to everything and you do go through all the emotions.

Your diabetic team should have a counsellor you can speak to, I made use of this to be honest.

There is also a great Facebook page called parents of type 1 diabetic children - it's been a god send all questions I had in the beginning and people going through the same situation for support.

I must say we are 2 years and 18 month on from their diagnosis now and although things have changed we are much more settled and it's just become a part of our lives, the boys adjusted much better than I did and have been so brave going through everything. As PP has said there is so much more technology and things seem to be advancing all the time medically xx

Lots of hugs your way xx

Apologies, channel mentioned above is just dreamflight6000

She’s also in the states so hopefully will be of some use