Tuesday, 16 November 2010

Having a breather

Events rather ran away with us last week - after those horrible nights of R being low for hours and hours we decided on Friday to see our GP. I'd been up with R from midnight to 6am, P had done the earlier shift until midnight, R hadn't slept at all and his blood hadn't risen above 5 despite all the glucose we'd been getting him to eat. The GP sent us to the local Children's Assessment Unit where we saw our old consultant - we sat with her and discussed the problem of his hypos and how we wanted things to move forward for about two hours. Finally with some brilliant advice from other parents of Children With Diabetes we insisted she contact UCLH - the hospital where R has been referred to for his diabetes care because we weren't satisfied with the care and support we'd received from our local team. The consultant did this but because it was Friday over the weekend there would be no more particular expertise than if we went to our local hospital and were transferred during the follow week. As we were all so tired this was our best option, so since Friday R has been in the local children's ward. I stayed two nights and his father stayed with him for two nights and one way or another he's never been left alone while there - my big fear was that well meaning medical staff who were largely ignorant of current diabetes practise might insist on a treatment that could well cause further problems.
We were lucky though - the nursing staff were brilliant and couldn't do enough for both R and I - even when he had a hypo yesterday afternoon and we had to chase him around the ward and then bribe him with money to take some Glucogel! Likewise, most of the doctors we met, once they'd heard what R has been going through they accepted that specialist knowledge was required and supported us as much as they could - one doctor spent hours over the weekend trying to contact various Endocrinologists up at UCLH so he could get some advice.
Only once, this morning actually, did we come across a doctor whose ideas about managing Type 1 Diabetes in children and adolescents were out of date and restrictive. Her plan - based upon reading his notes, not having talked to him or ever seen him before - was that carbohydrate counting and injecting insulin based upon what R was going to eat was useless for him as he couldn't manage it. Instead he ought to have three fixed doses of insulin each day and a restrictive diet.
Okay....why isn't that any good?
Firstly three fixed doses a day - that's an insulin mix which was the way all Type 1 diabetics were treated in the past. For some people it works extremely well but for most it's far from ideal. It requires a fixed diet - the same amount of carbohydrate each day, snacks at the same day and ideally the same level of activity each day. For many adults this can be ideal - only three injections and their diabetes is managed without it being intrusive to their lives. Unfortunately if you add growth hormone into the mix - which all children produce in large quantities, then put in P.E. lessons a couple of times a week, rugby practise and matches, weekends lazing around playing PS3 games and normal life for children. The fixed diet and fixed activity levels don't sound so good anymore.
Oh, and don't forget, some of those mixes are now so old-fashioned that the pharmaceutical companies are phasing them out in favour of modern treatments.
Secondly - carb counting too hard? No. There are plenty of books out there to help you count how many carbs are in a meal and there's even a brilliant iPhone/iPod app called Carbs and Cals - we use it almost every day. Once you've decided how many carbs are in your meal you work out how many units of insulin you need to inject to cover it depending on what ratio you use for that meal. Okay, I admit it, this bit can be complex....there is a wonderful blog post all about how complex this really is for Type 1 diabetics - do read it and maybe get an idea of how we live our lives now. Yes, it's complex but so is using an iPhone or playing a PS3 game if you've never done it before. Since diagnosis seven months ago, R's mental arithmetic abilities have gone from good to excellent. Just because something is complex it doesn't mean you shouldn't do it.
The third reason for not wanting to use insulin mixes is because we believe that for R's continued and future good health the best way forward is to keep up with new treatments, new technology and what the very best Diabetologists and Endocrinologists are suggesting. So what is it?

Insulin Pump Therapy
So that's another reason for going to UCLH - they're the best, nearest and they're the centre for pumps in the South East.

This morning R was finally discharged from our local hospital, he's home and is now catching up on lost hours of playing Call of Duty on the PS3. Tomorrow we're all off to London - he's being admitted to UCLH for the rest of the week at least and hopefully they can help us to manage diabetes more effectively.
I have mixed feelings about all of this - on the one hand I'm so pleased that finally we'll be seeing doctors who really understand this horrible condition and on the other hand I'm exhausted with fighting both diabetes and ignorance.

Friday, 12 November 2010

Here we are again...

I thought we had passed a turning point today - R's blood levels have been really high for most of the day - way up in the 20s. Normal blood glucose levels are between 4-6mmols, so a reading above 10 isn't good and over 20 often makes people feel very ill. R felt fine all day. As soon as the sun went down so did his blood. So, here we are again feeding lows with small cans of full sugar coke, dextrose tablets, glucotabs or lucozade. The upturn will come between 3.00am and 4.00am and then he'll continue to rise again until it gets dark tomorrow.

All of this without any insulin being injected. Clearly his pancreas is doing something odd because it's not working in the same way that non-diabetic's would.

You know the worst thing about this chronic condition?
How it fills up our lives so we don't talk or think about anything else.
How every time someone asks about how R is I turn into the biggest bore in the world with details about the differences between Type 1 and Type 2, the importance of regular blood tests, the need for an insulin pump, the fears every parent has about overnight hypos, the dangers of extended high blood levels and on and on and on.
It's like when you become a new parent - all you want to talk about is your beautiful baby and unfortunately some parents become baby bores. Let's face it, most babies look like Winston Churchill and while they're cute, they're not the best conversationalists. As they get older most parents remember other things in life but some continue to live through their children. Diabetes turns us parents into diabetes bores because it consumes our whole lives.
I really don't want to talk about this horrible condition all the time. I don't want to write about it either. I'm tired of living with it and I'm not the one who has it.

My apologies to those of you who have read this - if you're a fellow D parent you'll know only too well how consuming it is and if you're an interested 'civilian' I'm sorry I've bored you.

Now it's time to do another blood test and hope he's risen above 5.0mmols. Why? Because his pancreas doesn't know to stop pumping out its own insulin right now so he needs to have a high blood glucose level to go to sleep on - that way he won't drop so low during what's left of the night and he'll wake up in the morning. Did I not mention that? Too much insulin kills.

Thursday, 11 November 2010

The Joys of Diabetes

Has it really been three months since I updated this blog?!
Well I've been really busy with my son R who was diagnosed with Type 1 Diabetes in March this year. In September around the time I posted last he began to have a run of really high blood sugar levels. When I say, 'A run' I don't mean he had some high figures for a few hours or a day or two, no. He was dangerously high for about five weeks. At one point he was injecting twice the amount of insulin over twenty-four hours that you would expect for someone his size. What were the doctors and nurses saying? Not much. In fact so much of not much that we changed our GP surgery and got a referral to another hospital. Unfortunately because the other hospital is so good there is a waiting list just to be seen. We've just got a date - it's in December.

Meanwhile since September we've been managing R's care almost entirely alone. Fortunately we've got an incredibly supportive family and some amazing friends. We wouldn't have survived without the Children With Diabetes web site and email list.

Anyway, why am I posting this at 2.45am? Well, for the last three days R has been having less and less insulin but lots of hypos overnight. The last time he even had any insulin was Tuesday at noon and it's now the early hours of Thursday and we've just treated a hypo. We think maybe his pancreas has decided to start up its own insulin production again but it's going a little haywire and overdoing it during the night. We won't know for sure that this is the reason for the extended hypos until we see a consultant so I could be here each night from now until December, rather like some twisted advent calendar.