Hello world!
February 28, 2008-13 days to Pump Start for Joe and Tom!
If you live in the UK, and have Type 1 Diabetes (insulin dependent) in your family, then I am hoping you will find my on-line journal of some use. As a member of the UK Children with Diabetes Advocacy Group, I am one of a large band of parents trying their best to get good health care for their children who, by no fault of their own, have a life-long, life-threatening disease. My search for good care has lasted over 7 years - since Tom was diagnosed with Insulin Dependent Diabetes aged 18 months in 2000. It was doubly as important when Joe was also diagnosed, aged 8 in 2005.
We have travelled through the tribulations of mixed insulins, {Me: Oh God, it’s 12.30! Olly: No way. We’re in the middle of the M25 - we can’t stop! Me: I don’t care. Pull the car over; Tom’s pale and sweaty! Olly: Just give him his sandwich, get him to drink some juice. Me: You know he won’t eat in the car… shit, he’s being sick!!} and we have learnt to carb count, {’Did you weigh the plate?’ ‘Yes I weighed the plate!’ ‘Well, that looks like far less pasta than we had for 200g yesterday!’ ‘I’m sure I weighed the plate!’ ‘Is this Joe’s plate or Tom’s?’ ‘I can’t remember now, and I’ve put the sauce on!’} and have tried our best to get the levemir and novorapid right on Multiple Daily Injections{’Right, Joe you need to eat 10g cho at 10.30am and Tom, you need to eat 10g cho at 10am, if you are below 8 but not if you are above 8, but do have it if you’ve got PE, okay?’}! It’s been hard work but each step has brought its own reward and plenty of new problems.
The next logical step to help avoid the unwanted eating to avoid hypos and post-breakfast spikes, the highs of the weekend or the rainy day play and the hypos at night at 2am when it is most difficult to do the simplest of mathematical calculations (what’s half of 25 again?) is to get my children both onto Insulin Pumps. The insulin pump is a small computerised device which holds fast acting insulin. This it uses, just like the pancreas, to match the back ground energy needs of the body when it isn’t eating. You can, however, have absolute control of how much background insulin is in your child’s body every hour, reducing or raising it as needed with the press of a few buttons; compared to injecting long-lasting insulin, trying to predict the needs of the next 24 hours before they happen. You can bolus even the smallest amounts of insulin to match the exact amounts of carb eaten in every mouthful, with no extra injections for a second helping of potatoes or handful of crisps. Rather than 4-6 injections per day for each boy, they will have the insulin delivered through a tiny plastic tube under the skin connected to the pump by a slightly wider tiny tube, which is changed every 2-3 days.
Both Joe and Tom will also be having a Sensor Pump which means that once a month, for a week or so, they will be able to get Continuous Glucose Monitoring, to be able to check that the pump is perfectly matched to their daily insulin needs. Instead of only knowing the blood sugar levels when they do a finger prick blood test 6-9 times a day, we will be able to see a graph of exactly what their blood sugars are doing every few minutes. No more missed spikes and night time hypos from which the children do not wake. The pump will alarm and tell me when Joe or Tom is going too high outside the level of healthy control, or too low and in need of my help to save them from a seizure!
More children are being allowed access to Insulin Pumps in the UK. However, the numbers are woefully small compared to all other developed countries in Europe. Indeed, Joe and Tom will be the first young children to be given pumps in this area of the UK . We have had to fight for this care, and have to travel to University College London Hospital to find a specialist centre who can support us in this new phase of our learning. Of course, it is going to be very hard work having two children start on this intensive form of care at the same time. However, I am sure it will be worth it for my boys.
I will try and detail all the highs and lows, in terms of blood sugars and our emotions in this journal. Perhaps it will inspire. Maybe it will enthuse. If all it does is enlighten a few to the many challenges that childhood diabetes raises, I will at least have done some small thing!
