We’ve hit puberty big style! The insulin dosages creep up and up, the midnight feasts, bolusing for every snack that’s grazed upon. The tip-toeing into the kitchen at all hours to eat even more bags of crisps. Yes, it’s the bottomless, empty leg syndrome of a growing lad. I’m happy about that, don’t misunderstand me. I’d like to share my opinion on some management issues for this style of living with type 1 diabetes and coeliac in adolescence:
1 To collaborate with my growing lad and discuss openly that he has to live his life to the choices he is beginning to make. Supporting him and guiding him through this life with love, patience and a very good sense of humour. Most of the time this how we live.
2 To accept sleep will be broken for the next few years at least. Very rarely we have a smooth ride at bedtime, but it’s been like this since day dot with this condition.
3 Dealing with Fear of hypos:
Since his seizure, I wake most nights to check his blood sugars, I test them several times between 10pm and morning, just to make sure he is safe from harm. This happens when you almost lose your child because of the treatment that keeps them alive. I won’t dance around the seizure issue. His sister, pictured above, and I both have regular nightmares about it – even though it happened a year ago now. We have to talk about this because these are real, daily fears we have. Unless we could have technology that gives seamless, useable and comfortable protection against hypoglycaemia – these daily issues will be continue to be with us.
For example, just two nights ago he had a severe hypo in his bed at 10pm following a nice hot shower. Only half and hour before that his bloods were in a good place. You form a sense of trust that the blood glucose is playing nice, only to find half an hour later you were wrong. This frustration and worry is always with me as a parent. Even now, I know that logically I shouldn’t feel blame that I get things wrong, but how on earth could I not have predicted that one? Surely I should have guessed that the heat from the shower was going to be too much for him?
Anyway, since Lucozade have now changed their sugar content, and this is how he likes to treat a low blood sugar, he had to drink almost the full bottle to begin to feel normal again. For the shaking to stop. This led to him feeling very sick. I sat with him til midnight. Testing his blood glucose at regular intervals. To which end, his fingers were sore and he continued to feel low. Thinking we now need to look into stopping purchasing Lucozade and try different hypo treatments – I wonder how many other of the millions of people with diabetes are turning to other measures to treat low’s – please discuss folks? I would love to hear your ideas on this one.
The pump is great for introducing reduced basal rates when this occurs but basal changes can take up to 2 hours to have effect. Anyway this was the option I felt was best for that time of night. Roll on two hours, 2am and I felt in a panic that he had overtreated his hypo and blood glucose may have risen too much. I woke in a panic, with my heart rate racing. His bloods were at 12.1mmol/L. I left him til morning. 6:30am, and they were still at 12.7mmol/L. I should have corrected that one, but following a hypo one can never predict the glucose patterns. Can technology help us with all of this? Is there a panacea out there for these issues, these worries. Or will the functionality always need to include sleep disturbing alarms and vibrations.
I dropped him at school the next day, with a tired look on his face. As I have done so many times. There have been times when he hasn’t made it into school due to the tiredness, but usually we get through.
I’d love for people to understand just how exhausting this is, and the effects of that on our whole family. With him reaching nearly 15 years old now, and having lived with this since age 4, it can start to feel like a bad version of the film Groundhog Day.
I try hard each day to be grateful for him, grateful for life and happy that we have insulin as many around the world don’t have the same level of access to this life saving treatment. But oh my, just let me have peace of mind for one night!
Diet and Lifestyle
I’m thinking there used to be a school of thought whereby people who lived with type 1 diabetes felt restricted as a child when they ate at times, depending on influences from parental and clinical involvement. Thankfully now with the insulin pump, my son doesn’t always have these restrictions on when he can eat – apart from when he is hypo.
Hypo: body needs sugar – fast! Let’s get the orange lucozade (his choice). Imagine you had just ordered a nice meal in a fancy restaurant, and you have to treat the hypo first. This is because they body needs fast acting glucose for at least 10-15minutes before you eat.
So in this instance, there can still be an element of restriction. Would he even feel like eating the meal after a hypo? who knows.
The thing is, it is not always possible to predict a hypo is it folks?
Hyper: body needs more insulin. He feels so ill. Headache, sick. Again, you wouldn’t want to have ordered a nice meal would you?
The micro management of the insulin doses in life become so that you try to predict and prevent these swings in blood glucose levels. However, is it always possible? Swings in blood glucose levels can also be caused by stress, illness, growth, forgetting to bolus. The trials!
After all is said and done, I’m so proud of how he is navigating this foreign landscape and taking on board a collaborative relationship with me. Allowing me to support him when he just can’t deal with it. Taking the reigns when he wants and wonderfully guessing carb counts daily.
I’ve cared for him since age 4, and some days I miss the little feet, the little hand holding mine. But when he towers above me, and tells me he loves me that’s all I need.
Sleep will just need to wait!