Hello. I'm the father of a 9 year old that was diagnosed with Type 1 in mid-January this year. It's been an intense few months getting used to caring for our son and getting to grips with everything that Diabetes brings with it. Last week he had his first Hb1ac which, as it included the period of 3-4 weeks after diagnosis when his sugars were slowly coming down, I wasn't expecting to be great. However it came back as 6.8% which the consultant said was one of the best in the clinic. It's then that things got confusing though as he said we weren't doing things correctly.
We haven't had a great deal of contact with the Diabetes team at the hospital past the first few weeks after diagnosis. I think we've spoken to them about 4 times since and attended clinic twice. They are incredibly busy, dealing with around 200 children, and we've been left to get on with it.
Anyway we fell into a regime where we tried to anticipate his blood sugars as this just seemed logical. So at a test before food we'd see where his blood sugar level was, think about what he was going to be doing after food and see what relative level of carbs was in the meal. We'd then pick a ratio accordingly to try to balance his blood sugars. We use half unit pens so it's easier to tweak on this basis. Our son has been involved in everything we do and is himself getting used to thinking about what ratios should be used. But now we've been told to stop doing it this way.
What they want us to do is to stick to fixed ratios and adjust for high blood sugars using his current insulin sensitivity, which is around 1 unit to bring him down by 5. Although they also say to use different, but still fixed, ratios on lazy days or before sport (he plays a lot of sport). Fundamentally though this seems to be a reactive approach - you correct afterwards if blood sugars are high - rather than proactive where you try to limit the highs from happening in the first place.
The consultant tried to justify why with a couple of points:
1. The insulin you give to bring down and the insulin you give for food are two different things. Whilst we understand this, as we take into account the relative carb loading in the meal he's eating we're unsure why this matters. We're actually trying to avoid giving units to bring him down at all.
2. It's difficult for them to go through his blood sugars over the telephone if we're changing ratios. Again whilst we understand this there are a couple of problems with this: a). Surely the most important thing is the well-being of the child (both in terms of his physical health and what mentally makes this easier for him to deal with) and b). We have full records for every single meal he's had since diagnosis including not only the ratio chosen but the individual foods and the amount of carbs in them and can present this to them in whatever way makes it easier for them.
Using our method we've only once had to give him an extra injection in the last 8 weeks and that's important for us as, during the first 4 weeks after diagnosis, the number of extra injections was obviously getting him down. We also made him a promise when he was diagnosed that we'd do the heavy lifting so he could get back to being a normal, active 9 year old and we wouldn't stop him from doing anything he used to do just because he had Diabetes. We've managed that - it's been difficult but we did not want to wrap him in cotton wool and make him think that there were things he could no longer do. It was about making sure he had confidence as much as anything to fit Diabetes around his life rather than the other way around.
His honeymoon period started about 5-6 weeks ago and in the last week or so it seems that this is now ending unfortunately.
So the last clinic appointment has left us confused. We're not experts by any stretch of the imagination and it feels odd to question what we're being told. We've been told right from day one that it's a very personal condition and what works for one person might not for another and that things change over time. I understand that but feel that we can't really think about how it will change in the future, we have to deal with it as it currently is. We've been left feeling that there must be something we're missing.
Can anybody add any personal experience to this? We don't want to be doing things incorrectly and we don't know any other parents socially dealing with a child with Type 1 so it's difficult for us to get other opinions from others who deal with the realities on a daily basis. I thought posting here would be a good start. If we're doing it wrong we'll change.
We haven't had a great deal of contact with the Diabetes team at the hospital past the first few weeks after diagnosis. I think we've spoken to them about 4 times since and attended clinic twice. They are incredibly busy, dealing with around 200 children, and we've been left to get on with it.
Anyway we fell into a regime where we tried to anticipate his blood sugars as this just seemed logical. So at a test before food we'd see where his blood sugar level was, think about what he was going to be doing after food and see what relative level of carbs was in the meal. We'd then pick a ratio accordingly to try to balance his blood sugars. We use half unit pens so it's easier to tweak on this basis. Our son has been involved in everything we do and is himself getting used to thinking about what ratios should be used. But now we've been told to stop doing it this way.
What they want us to do is to stick to fixed ratios and adjust for high blood sugars using his current insulin sensitivity, which is around 1 unit to bring him down by 5. Although they also say to use different, but still fixed, ratios on lazy days or before sport (he plays a lot of sport). Fundamentally though this seems to be a reactive approach - you correct afterwards if blood sugars are high - rather than proactive where you try to limit the highs from happening in the first place.
The consultant tried to justify why with a couple of points:
1. The insulin you give to bring down and the insulin you give for food are two different things. Whilst we understand this, as we take into account the relative carb loading in the meal he's eating we're unsure why this matters. We're actually trying to avoid giving units to bring him down at all.
2. It's difficult for them to go through his blood sugars over the telephone if we're changing ratios. Again whilst we understand this there are a couple of problems with this: a). Surely the most important thing is the well-being of the child (both in terms of his physical health and what mentally makes this easier for him to deal with) and b). We have full records for every single meal he's had since diagnosis including not only the ratio chosen but the individual foods and the amount of carbs in them and can present this to them in whatever way makes it easier for them.
Using our method we've only once had to give him an extra injection in the last 8 weeks and that's important for us as, during the first 4 weeks after diagnosis, the number of extra injections was obviously getting him down. We also made him a promise when he was diagnosed that we'd do the heavy lifting so he could get back to being a normal, active 9 year old and we wouldn't stop him from doing anything he used to do just because he had Diabetes. We've managed that - it's been difficult but we did not want to wrap him in cotton wool and make him think that there were things he could no longer do. It was about making sure he had confidence as much as anything to fit Diabetes around his life rather than the other way around.
His honeymoon period started about 5-6 weeks ago and in the last week or so it seems that this is now ending unfortunately.
So the last clinic appointment has left us confused. We're not experts by any stretch of the imagination and it feels odd to question what we're being told. We've been told right from day one that it's a very personal condition and what works for one person might not for another and that things change over time. I understand that but feel that we can't really think about how it will change in the future, we have to deal with it as it currently is. We've been left feeling that there must be something we're missing.
Can anybody add any personal experience to this? We don't want to be doing things incorrectly and we don't know any other parents socially dealing with a child with Type 1 so it's difficult for us to get other opinions from others who deal with the realities on a daily basis. I thought posting here would be a good start. If we're doing it wrong we'll change.
