Question for anyone who’s child has been diagnosed with T1 diabetes?

[SinkGirl]

My son was born with hyperinsulinism (opposite of T1 diabetes) and now that’s resolved but he has Ketotic hypoglycaemia. Kids with these conditions are at more risk of developing T1 diabetes. On waking his blood glucose is usually 3.1 - 3.9 after fasting overnight so we are giving him cornflour before bed to help.

We recently had him tested for diabetes inspidius as he drinks and urinates so much. You can often smell ketones on his breath but they refuse to prescribe ketone test strips as they say it’s not necessary with KH.

Twice this week he’s woken up with what I consider to be high blood sugar for him (5.0 was the highest) - I realise this isn’t high in the grand scheme of things but I’m wondering if it’s high for a fasting level?

The other day I tested his sugars because I could smell ketones very strongly but he was in the 5s. Don’t know what his ketones were.

The DI test was negative and they said T1 diabetes was excluded because of his low sugars in the morning.

He’s now drinking even more and constantly hungry.

I want to take some blood sugar readings when he’s not fasting so I can get in touch with a consultant (his has just retired so I’m waiting on details for who will take over, and his GP knows nothing about any of this). I’m just not sure when you’re supposed to test - right after food, an hour after, two hours after? If anyone knows, please let me know so I can try and reach someone tomorrow.

Forgot to add, he hadn’t had cornflour the night before the 5.0 - we’ve just started it again as he was 3.1 this morning.

The best time to test would be two hours after eating a carbohydrate heavy meal, but I don't know anything about ketotic hypoglycaemia so I couldn't tell you whether this would be right for your child (or even safe).

Why do they think he is at risk of type one diabetes if you don't mind me asking? Did he have a partial removal of his pancreas?

Thank you. KH is essentially “accelerated starvation”. It’s like what happens to anyone who’s not eating, it just happens more quickly. He can become hypoglycaemic not eating overnight, or sometimes after just a few hours if he’s active. He normally has something to eat every couple of hours during the day, so I think tomorrow I will text him before each meal / snack as they’re generally a couple of hours apart. If his sugar levels are high a couple of hours after eating that would definitely not be normal for KH, but we only ever test him after periods of fasting or if he’s vomiting so I don’t know what his sugars do after eating.

Lots of children who had transient hyperinsulinism as babies go on to develop T1 when they’re older - I don’t know why, but they still don’t understand what causes transient hyperinsulinism properly. He also has a visual impairment that’s closely linked to a variety of endocrine problems which puts him at increased risk for diabetes, hypothyroidism, cortisol deficiency, growth hormone deficiency and lots of other things so he has regular endocrine screening.

Thank you for explaining this. I really think you need to talk to your endocrinologist. I can understand it's really hard because you are worried when you smell the ketones and you know he might get type one in the future. I guess there wouldn't be any harm in testing a couple of hours after eating, but it really does sound like his situation is very specific and you need expert advice. I hope it is all ok and you get the advice you need.

Thanks, sorry I’ve just seen your reply. I’ve been testing him this week a couple of hours after meals and his sugars have been normal (low 5s mostly) which is reassuring but I’ve reached out to his endocrinologist anyway - they’ve just done an endocrine panel recently as they will have to monitor him longterm so will see if that shows anything up. He likes to keep me on my toes I think