Handhold- toddler newly diagnosed type 1 diabetes

[Mudonstairs]

I have been in hospital since Thursday night with my 2 year old. We noticed him being super thirsty and filling his nappies with wee within an hour, no other symptoms and he wasn’t in DKA but glucose level was over 30. We rushed to A&E and had all the test done on Thursday night which was extremely traumatic and exhausting. I have type 1 myself since I was 8, so I know what it entails in terms of insulin and checking glucose. I feel like I’m having to already say no to him if he wants an extra slice of toast for breakfast etc and we aren’t even out of hospital yet. It’s breaking my heart that I’m putting my 2 year old on a diet. We are due to have our last educational day tomorrow and hopefully we can go home.

I am just really struggling emotionally to accept it. Tonight will be our 4th night in hospital and I think being in here is taking its toll on me. They have a one parent overnight policy so my husband has been having to leave us. We don’t have our own room either so it’s really stressful having to try and limit the disruption of his outbursts. It just makes night times very stressful as toddler is crying every night wanting to go home and won’t go to sleep until after midnight. He’s probably terrified. Finding it really hard to stay positive and strong for him 😔

Obviously I'm not an expert doctor but I do have a lot of experience of Mody. You saying your Mum also has really makes me think it could be!

It is actually treated differently to type 1. My sister manages hers with tablets and being very fit and healthy whereas I take insulin myself.

Its definately worth bringing up to your diabetic team because it could alter how your little one is treated long term 🙂

There are several types of mody so its worth finding out.

Ps I realised this was an old thread!

Ps...my sister was offered the test because I had diabetes as did my mum so i mentioned it and they tested me. Its just a blood test that they send to some lab down south. It was via my actual diabetic clinic at the hospital not the GP.

most doctors have never heard of mody before.

I know im not the OP but just wanted to send assurances to the PP who has a recently diagnosed child.

My DC is 6 now and diagnosed a little over a year. That first period was so chaotic and although its never easy, things do definitely calm down.
Another recommendation to ask for the Omnipod 5 if you can, most paediatric teams rexommend them so it shouldn't be too hard. Makes things like school and childcare so much easier as you're not having to ask people to inject your child, just enter the numbers on the handset.

You will have plenty of calm days and a fair few 'type 1 is fking awful and so unfair' days but it will absolutely be okay