Friday, 10 January 2014

Living with Type 1 Diabetes

For World Diabetes Day last year, I wrote an insight into a day in the life of a child with T1:

1) night testing

0145, give her a nightime blood test. Levels a bit high but decide not to correct as experience tells me the numbers fall away quickly as morning approaches and I don't want her to go low. Last night they were a bit low so gave her a snack - biscuit & milk. She has no memory of being sat up in bed & fed. No 2 nights are the same.

2) Breakfast

We do the blood test to see her morning levels, and if there's a correction to do, we do it before she eats. Change the needles on the long & slow acting insulin pens. Today we had to change the long acting insulin as well.

What's the difference? The long acting levemir provides the basal dose, and this ticks away in the background all day, doing normal pancreas stuff.

The fast acting novorapid handles the food intake. But in order to give the right amount, we have to work out the carbohydrate content of everything B eats, type that into the meter, which then tells us how much insulin to inject. This is the bolus dose.

Carb counting: Most foods have a carb content per 100g on the back, so we weigh her cereal, add the measured milk. Toast is easier as they have a per slice count on the bread packet. Some people add a bit on for the toasting as well but we don't. Add on a few grams for the honey, or weigh it onto the buttered toast.

I hate carb counting, it sucks the spontaneity out of food, but it's also absolutely essential. When we let it slide or get it wrong, B can get too much or too little insulin, and end up too high (hyperglycaemia) or too low (hypoglycaemia) - both of which will make her feel shit and both of which could get nasty if not treated immediately with correctional insulin or fast acting sugar.

There are apps & books to help, but sometimes the food isn't in there, so you have to guess.

So, 1 test, 2 needles changed, 2 or 3 injections (depending on whether she's decided what she's having to eat), food weighed & measured, carbs calculated. Now she can eat! Every morning...

3) School

B doesn't let her diabetes get in the way of her doing anything, and nor do we. She does everything at school that the others do. We are very lucky to have a supportive school, and an amazing TA who takes care of B at lunchtime and makes sure she has the right injections. Carb counting is not so onerous, as most of the time the school catering companies can give you an idea of the carb content of the meals.

During the day, B will test herself if she's feeling unwell, and the teachers may keep an eye on her too, but I understand that it's not easy for them and they have 29 other kids as well. As she's getting older, she, we and they want her to become more independent, but you do still need trained adults around who know the signs. In very unusual cases, some parents get a statement, which means their child can have 1 to 1 care - but these are definitely the exception and not the rule.

She'll usually need a snack before or after PE, and this may cause some envy from her classmates, who just see her eating biscuits during lessons. She used to have to be taken to the medical room for tests, but we insisted they keep her test kit in the classroom - if she's hypo, she needs to be tested right away and shouldn't be walking halfway across school, or going down stairs etc.

We're not sure how any residential school trips will be handled, as she does need to be checked and potentially treated at night, and this is usually a big area of concern for parents - we don't want our kids to miss out, and legally the school can't exclude them, but some schools make it very difficult. I hope this will not be our case.

BG levels can be very different during the school day than at weekends, and can vary day to day depending on what they are doing. Concentrating can cause the levels to go down more quickly as the brain also burns up the carbs.

She'll come home in a couple of hours, and may well be bordering on low - she usually fades after lunch, so we need to think about whether the carb ratios are right at lunchtime or not, and change them if necessary.

4) Bath & bedtime

So the evening meal is much like breakfast, with all the food being weighed and the carbs calculated. We have to be careful with certain foods - fatty things like pizza take a long time to release, so we give the insulin after she's eaten it. We also have to watch out that what we calculate is what she eats - otherwise we might end up giving her too much.

She might have a treat from her sweetie box (which we carb count and add to the meter), or if she's been to a party she might have the cake. She's incredibly disciplined about waiting until an appropriate time to eat her sweets or cake - much more than I am.

At bathtime, she might suddenly feel funny in the bath or shower - this is because hot water can accelerate the absorbtion of insulin, so this is another thing we have to look out for. I imagine she'll be pretty pissed off when she's older and suddenly feels low when she's covered in soap or shampoo!

Before she can go to be she has to be tested again, and given a second dose of the long acting levemir to get her through the night. If her numbers are below 7 then she'll need a small snack - a couple of biscuits or a glass of milk - something to bump her up a bit and keep her from going low in the night. This is the nightmare of many T1 parents, and why we test at night, as you just don't know whether they will wake up once they go low or not. The other day, she did, at 0530, so we were able to give her some OJ and get her back up again. Other times she may not. It's a worry.

When she eventually goes to bed, we can put our feet up until we go to bed, but we should expect to test her a couple of times in the night, and be prepared to feed her again if we need to - or indeed administer a correction. We can usually tell if we'll need to correct her as we'll hear her padding around upstairs going to the loo frequently - one of the signs of high blood sugar.

Just another day in the life of a child with Type 1 - and this was an easy day without any additional complications like being ill!

5) the stats

B's numbers today: 5.2 at breakfast, 6.1 at lunch, 4.1 after school, then a biscuit-frenzy induced 13.2 at teatime. Apart from the 13.2, these are excellent numbers! I just know that tomorrow we could do exactly the same, she could eat the same, and they'd be different - higher or lower - such is the roller-coaster of type 1 diabetes!

Thanks for your patience in reading these updates about what it's like managing & living with Type 1 diabetes. I hope you've gained some awareness into what is a relentless but manageable condition - she'll have it for life, or until there is a cure, but it needn't be a life sentence.

Type 1 is auto-immune, it is not caused by obesity or poor lifestyle choices or too many sweets - not that you'd know that from the way the media uses the blanket term "diabetes". I'm not sure I knew there were several different types before it affected me, or what they were, so I try to raise awareness rather than be judgmental!

With B the signs were rapid weight loss, extreme unquenchable thirst, going to the loo all the time & general listlessness. We were lucky that the GP did a blood test and sent us to Paediatrics at Lewisham in an ambulance, where we have a lovely team helping us manage this disease.

It is a daily struggle, but we do our best to keep everything as normal as possible, and things like carb counting are becoming part of the routine. She can eat the same as everyone else can, there's nothing we have to avoid - we just have to calculate how it's going to affect her and account for it with insulin.

One of the reasons we're able to cope is partly because we have no choice, but mainly because B takes it all in her stride with such courage that she leaves us humbled.

Here she is with her equally incredible Mum who does most of the work, saving the best bits (weekends and nights) for me!

If you want to help find a cure, then you can make a donation to JDRF, or sponsor me for one of my crazy bike rides - it'll get to the same source, and will be used to find a cure.

Thanks for reading.