Hi Phoebe i can only really go on what it is like as a parent with a child on a pump so don't know if it will be of any help. I gave a speech to consultants and DSN on behalf of Medtronic last year who wanted to know how a pump had transformed our daughter's life and how for us as a family, it's long winded but i think it reflects exactly what we feel about pumps.
"R, our daughter, is 6 years old. She was diagnosed with type 1 diabetes when she was 3? years old at our local hospital. She was originally put on 3 injections a day, and it was disastrous - this is a period of our lives that we never wish to revisit. Swinging blood levels, feeling out of control and not having a clue what to do were daily. MDI was not much better.
As we wanted the best for our daughter we decided to transfer her to xxxxx, a more proactive hospital than the one that we were at. This turned out to be the best decision we have ever made for our daughter and her future. This however, is closely followed by the decision to put her on the pump. The pump has changed our lives dramatically. At our 6 week clinic, her DSN asked us how it was going, what it was like. I was at a loss for words as I couldn’t begin to describe the massive impact it had had. 4 months on and I am still struggling to get express the transformation.
We feel like we have been reintroduced to our little girl. She has more energy, is happier and brighter. 2 weeks into pumping I can remember commenting to my husband that her behaviour was so out of character. She was constantly chatting, lively, and cheeky and I felt sorry for her poor brother as she was constantly chasing him around! It came as a shock that when it slowly dawned on us that this was the real R – who wasn’t being suppressed by swinging blood levels and generally feeling groggy.
Diabetes came into our lives unexpectedly and uninvited. It disrupted and shook our world. My husband likened diabetes and injections and the decisions we had to make with insulin like driving down a busy motorway blindfolded – not knowing where we were going, what we were doing and who could help. We still have days like this on the pump but not every day. The pump has given us back control; given us our lives back; given us spontaneity and freedom that we had lost; we can relax more and bizarrely we feel like we can breathe.
It’s hard to describe on a bigger scale how the pump has worked for us. I’d like to share with you specific ways in which the pump has changed things for us as a family and for R.
On injections, R would often look pale, ill and tired. The teachers at school would often comment on her performance. The contributing factor was having to wake her at midnight most nights and give her milk, just so she would go through till morning and not go low. We tried other regimes but they didn’t work. She missed several days of school because she was just too tired to function. But NOW, on the pump the transformation is amazing. She has colour in her cheeks, she has less bags under her eyes, she’s sleeping better, we’re sleeping better and life therefore is easier with more sleep all round.
On injections, it was like having a newborn baby. Everything was so regimented with the times we ate. We were constantly clockwatching. If we went out for the day we had to pre-plan where we were going; what time we would get there; how long the journey would be; would this fit in with snacks and lunch?; where the nearest toilets were; would the outing coincide with all mealtimes?; how long would we be out? Etc. This was all before we had even left the house! But NOW, we have spontaneity and freedom back. We can eat when we want early or late. Diabetes does not dictate how we live our lives now, we dictate to the diabetes.
The toilet was R’s best friend on injections. During the morning she would go at least every ? hour. Our target range is 4-10mmol/L. She would wake at a nice figure, say 6mmol/L but 2 hours later at 10am she would spike drastically in the mid to high 20s; then 2 hours later she would crash back to her breakfast figure or even have a hypo. What effect this was having to her little body I do not want to even contemplate! But NOW, on the pump if she started at 6mmol/L she will peak around 10mmol/L and then back to 6mmol/L in four hours. The difference is amazing. It is so beneficial as her play and learning is now not interrupted and she can get on and carry on like a normal 6 year old should.
This is an odd one but on injections there would be so much resentment with my husband over whose turn it was to do the injections. Who did it last time? How many have you done this week? I’ve done “X” amount today” etc. but NOW, the resentment and burden has lifted. It has had a real positive impact on our relationship. Yes, R needs set changes but they are every 3 days. Not 4-5 injections a day.
The last point would be that on injections if R would go around a friend’s house for tea they would want a snack after finishing school. This invariably would be an ‘unhealthy’ snack. R would look with puppy dog eyes at me pleading that she could join them. But she knew that she couldn’t and a slice of ham or cheese was not going to cut it when she saw her friends eating biscuits. She would mimic me saying “After tea with my insulin…” She was impatient, I was impatient both of us hating diabetes. But NOW, on the pump it is just so liberating, so much freedom. It she wants to eat she can, we just bolus and away she goes. This is the same for lollies or chocolates that are given out if it’s a child’s birthday in class. Before, on injections she would come out, lolly in hand pleading to have it whilst watching her friend rip of the wrapper. Again, she couldn’t and she knew she had to wait for her tea to have it with, But NOW, she comes out with lolly in hand she looks at me in wonder and we are both still at that “WOW!” phase, where it’s “yes you can have it isn’t it amazing!!!!”
So, in conclusion…
Looking back I wish that R had started pumping on diagnosis. In the 2? years that have gone, as a parent I have cursed and hated diabetes. I have felt a complete failure, felt so alone, felt out of control, I’ve grieved for my healthy child, and gone through the whole “it’s not fair” process. On top of all of this we’ve muddled through with insulin injections and regimes that just didn’t work and were never going to work judging by the different basal needs that R has. I’m 100% positive that a pump would have made such a difference to how we view life as a whole from the start. Just being able to tinker with basal rates to try and reflect what a healthy pancreas would do or set temp basals for illness or reduce it to prevent lows or for exercise is amazing.
Another positive side is her HB1AC has gone from 9.3% to 8.3% within the 12 weeks pumping. But, in a way, nothing has compared to the knowledge that in just 16 short weeks we know we have improved her quality of life and met our new, happier R."
How embarrassing...!! On the plus side, now when I have blood taken it feels like no trouble at all - silver lining eh!