Type 1 Diabetes sucks!

This week little Miss BB lost her 3rd and 4th baby teeth. Tooth number 1 was accidentally knocked out by Master BB at the end of last year, however the loss of these top teeth really are a sign that our baby girl is growing up fast.

However, growing up brings with it other problems. Little Miss BB has Type 1 diabetes and Coeliac disease. Type 1 diabetes is completely different to Type 2 diabetes. Type 1 diabetes is an auto immune disorder – it is absolutely NOTHING to do with being overweight or not exercising or poor health. It is one of those horrible quirks of fate that the child has Type 1 diabetes. There is nothing the parents could have done to prevent it. Most children who have diabetes have Type 1. They are insulin dependent.

A child with Type 1 diabetes can generally eat anything they want – they can have sweets, cakes, biscuits, ice cream etc. However, everything they eat which contains carbohydrates, has to be matched with insulin. For example 3 biscuits would need 1 unit of insulin or two slices of bread would need 1 unit of insulin. Even a glass of milk or fruit juice requires a dose of insulin. Therefore, most parents of children with Type 1 diabetes need to grasp carbohydrate counting. This means that before their child eats, we need to sit down and calculate how many carbohydrates is in the complete meal which they are about to have – this includes any starter, main course, dessert and drink.

Little Miss BB is on an insulin pump. This drip feeds a small amount of insulin directly into her body, via a cannula in her leg, every hour. When she eats, we send more insulin, as a one off bolus, to cover the carbohydrate content of what she is about to eat. The pump has a huge advantage over injections. On injections, all the carb values need to be worked out in advance. If the ice cream van pulls up mid afternoon, the child on injections needs to make the decision whether to have another injection just for the ice cream, or to do without. If Little Miss BB wants an ice cream, she does not even need to know she has had extra insulin, as the insulin dose is sent remotely to her using a blue toothed handset. Last year, the ice cream van would pull up, and by the time we had found the injection pen, worked the dose out and given the injection, the ice cream would have been melting everywhere. The insulin pump has absolutely transformed life for us.

However, the insulin pump is not easy. In fact, for the adult, it is harder. It requires constantly adjustments, some tricky maths at times, lots of head scratching and “help me” phone calls to the diabetic nurse. You think you have just got the child’s insulin levels correct, and then the little devils decide it is time to grow, and their insulin requirements go up and up and up! This sends the perfect levels out of the window, and you back at square one! School days use different amounts of energy levels to home. Any illness – a cold, sickness, chicken pox etc. all alters insulin levels. Sickness can take a child super low, into constant hypos. A cold can send a child super high, into having constant hypers! The aim of the diabetes game is to try and keep the child’s blood sugars sitting nicely somewhere between 4.0 and 10.0 mmols (although a hyper isn’t until after 14.9 mmols).

The other thing which people often can’t grasp about diabetes is that the child needs care around the clock. The child has had an organ failure – their pancreas has given up producing insulin for them. Their needs are not simply 3 injections or boluses a day with a few finger prick blood tests! No! They need checking many times a day, and also at night. A low or high reading on an evening can means that one of us has to get up and do night time tests too. Trying to get sugar into a sleeping child really is no fun. Multiple hypos may mean the child needs careful watching, multiple tests and lots of fast acting sugar to prevent them fitting or going unconscious. We hold several emergency orange plastic boxes – these orange boxes contain a life saving hormone injection of Glucagon, which in the event that DD was unconscious, we would have to administer before taking her to hospital.

Being hyper (high) brings a different set of issues. It makes Little Miss BB very irritable and grumpy. She comes across as cheeky or awkward. When she is high for hours in a row, it is hard to keep calm. She may be extra thirsty or hungry. The sun can affect absorption of insulin too and can make her high. Before diagnosis, Little Miss BB used to have phenomenal temper tantrums which lasted for hours, and involved lots of door slamming and kicking of furniture We had no idea at the time that she was very sick.

Believe me, Diabetes is not pleasant for anyone involved. Even on a day to day basis, it is a cruel and horrible disease. I have to confess, I try not to look at the long term effects. However my step grandfather had Type 1 diabetes, so I know enough to know that we have to do my best to keep Little Miss BB safe and well.

Little Miss BB is incredibly brave. She has to endure multiple finger pricks each day to give blood samples for testing. Every 3 days she has to have a cannula fired into her leg, and her pump is then attached via a plastic tube. She has to sleep with her pump on. She has to do a finger prick test before eating, and then we all have to work out her insulin dose before she eats. Whilst we try to keep life as normal as we can for her at school, Little Miss BB has to have blood tests, quiet time when hypo, insulin given etc. during her school days. She does get frustrated when she has to leave her friends to have these things done. When she is high, Little Miss BB will be grumpy and irritable. She gets hungry and thirsty and needs the toilet more. When she is low, she is not allowed to move until her blood sugars go up again.

Little Miss BB is amazing…….we are all very sad that she has Type 1 diabetes. We all hate living with it. However, we know that the insulin pump gives us all the best chance of living life as normally as she can. Little Miss BB does get extra hugs and attention because of her diabetes. There are also rare, but very welcome side effects of having diabetes, such as being able to go on outings which otherwise we could not have gone on. Later this year, Little Miss BB is going on the most incredible trip of her life, thanks to her bravery and cheerfulness, despite having type 1 diabetes. But shhhhh because she doesn’t know yet! She is one awesome little 5 year old, and we are so proud of her!

As for Coeliac Disease….that is a topic for another day!!