2 year old son hospitalised with DKA and diagnosed with Type 1 - help please!

[ladbrook85]

Hi all,

So our 2 and a half year old son was poorly at the end of last week and we eventually got to the point of calling 111 as we were concerned about his heavy breathing and lethargy. They referred us to a local GP as we were staying with some family away from our home. GP said all seemed ok but concerned about lethargy so referred to hospital. Upon arrival at hospital he was very limp and they quickly inserted cannula to get his fluids up and diagnosed him immediately with DKA and Type 1 diabetes. This has obviously come as a huge shock to us and has turned out world upside down.

Fortunately he is now much better but we’re coming to terms with his new condition and we’re learning rapidly the blood sugar testing and insulin regime whilst we remain in hospital.

He has two older brothers 4 and 7 who are healthy and neither of us have diabetes. We do have history in family but only in grandparents (my paternal grandmother and wife’s maternal grandfather).

We’re waiting to be transferred as outpatient to our local hospital team and we’ve actually just been told we can leave hospital tonight and go back to my wife’s parents which is exciting and terrifying at the same time!

Any help from those who have dealt with similar situations would be much appreciated. CGM’s or pump recommendations - any tips. The insulin injections are proving pretty harrowing at the moment - poor thing.

Many thanks in advance.

 

[Heyrehair]

Our daughter was diagnosed under similar circumstances at two years old. Spent one month on the ward and didn't leave until we had both the Pump and Dexcom G5, mainly to ensure they didn't try and fob us off without providing them.
It is a massive shock, and slowly you come to terms with it and all the changes it brings.
She is now five, still has the Dexcom, but a G6 now. Our pump has temporarily changed as we are on a clinical trial for closed loop at Addenbrooke's, which has vastly improved the quality of life for all of us.

As each journey is different I don't know what will work best for you, but I am happy to try and cover any queries that you might have.

Wishing you all the best.

Andi

 

[ladbrook85]

Thanks Andi. It’s a bit of an awkward one with regards CGM and pump as we were out of area so always going to be transferred and apparently the advice and recommendations change between regions - seems odd! All staff at Bath RUH have been wonderful and we hope we will get similar treatment at Heartlands when they eventually arrange an appointment for us as outpatient. I’m glad we will now transfer as outpatient to outpatient rather than inpatient to inpatient, especially with all things Covid and also two other sons to worry about.

Thank you for the offer. Will no doubt have lots of questions over next few days, weeks, months!

 

[wolfie11969]

I have to say my daughter could have written this back in April. Her 3 year old daughter was in similar situation and was taken into hospital and diagnosed with Type I after DKA.

She had the same treatment and came home with 4 different monitors for different things and a lot of information in her head about carbs. She did have follow up appointments to see how they were doing.

There is light at the end of the tunnel. My daughter is now training me to know carbs and insulin and how to deal with hypos etc. I've had my granddaughter a lot over the past month due to one thing and another and the training is working for both my daughter and me.

Just this week had a meeting to discuss possibility of a pump if they can get funding.

Also my granddaughter had her quarterly check up yesterday and her HBA1C has dropped from 128mmol to 48 mmol so it proves that it is all working as it should be.

There are many wonderful, experienced people on these forums so get yourself friendly with a couple and swap notes.

Good luck to you all

 

[ladbrook85]

Thank you for the messages so far. So, to update, we’ve been managing ok so far with Aviva Accu Check Expert Meter, carb counting and multiple daily injections - Novorapid for fast acting and Lantus of an evening.

We finally heard from Heartlands today after being discharged from Bath RUH on Wednesday evening last week. They have suggested the Dexcom G6 and possibly a pump further down the line - wither Medtronic or OmniPod.

Out of interest what CGM’s and pumps do people have for very young children of 2/3?

Our son is coping ok so far. He doesn’t mind the finger pricking tests but he often runs away from the needle and we are having to hold him down sometimes which is upsetting. On the whole though I think we’re doing ok for just under a week of fending for ourselves.