When my son was diagnosed with Type 1 Diabetes at the age of 5 and at every clinic we’ve been to since, we were told that night testing of his blood glucose levels was not necessary, unless something else was going on. So we have only been testing him in the middle of the night when he is either ill (then it’s every 2 hours anyway), is lower than expected when I test him as I am going to bed, or if his results aren’t adding up properly looking at morning results.
According to the professionals in this country night-time testing for Type 1 Diabetes is not necessary, but I just dare you to say that on a Type 1 Diabetes group on Facebook. Believe me the backlash will make your eyes water, and make you question just how terrible a parent are you?!
Every single night before I go to bed I do Fin’s finger prick blood test, as I wouldn’t be able to sleep worrying otherwise. According to our diabetes team this is more than a lot of parents do and is the ‘right’ thing to do. According to seemingly hundreds of parents on Facebook I should be setting an alarm for around 3am every single night to check Fin to make sure he hasn’t gone Hypo.
The question is who to believe? On the one hand the professionals are trained and should know what they are talking about, but on the other hand we as Type 1 parents LIVE with this every day, and often in my (highly debated) opinion know better than the professionals.
The reason for the conflict? I don’t have a medical degree and can’t fill you in on the professionals’ side of things, but know where the parents are coming from. Today I read a news story online that hit me like a ton of bricks. The sort of story that the parent of a Type 1 Diabetic child wishes they could unread.
The story was about a 19-year-old man who died in his sleep. He died in his sleep from what is known (and feared) in the Type 1 World as ‘Dead in Bed syndrome’. This syndrome is just what it sadly sounds like, it’s when a Type 1 Diabetic dies in their sleep, and is thought to be due to overnight hypoglycemia – although this has yet to be 100% proven.
For those of you who don’t know much about diabetes, the ‘ideal’ blood glucose levels are between 4 and 8, and anything below 4.0 is a ‘hypo’. When Fin has a hypo he needs to have some fast acting sugary stuff such as lucozade, followed by a snack with longer lasting carbohydrates once his blood glucose is back above 4, to keep it that way.
Untreated hypos can lead to seizures, comas and more. This is part of why I check Fin before I sleep, to make sure that if he is lower than usual or even hypo already I can deal with it. Dead in Bed syndrome is meant to be rare, but that doesn’t mean it won’t ever happen and to be honest every morning when I see my son move in his bed I feel a relief.
The question is though are the professionals right in saying that night time blood glucose testing isn’t necessary, or are we missing out on stopping more ‘Dead in beds’ from occurring because we follow the wrong advice.
This post today isn’t about me giving you answers I’m afraid, it’s more me trying to find what the general consensus on night testing is. The parents on Facebook often come across as a bit full on and bullying of those who say they don’t night test, and I am beginning to worry maybe I’m in the wrong? Have I been risking my son’s life for the last almost 6 years without realising, or are worried panicky parents feeding their own hysteria online?