People’s Stories: Toddlers

Alex

Alex

Alex was diagnosed at 11 months old and we took the offer of a pump straight away being fans of technology. The pump enables Alex to have a normal life as possible with diabetes. Because he is so young, he needs fractions of units of insulin and the pump is the only way we can administer this. He can eat what he wants, when he wants, and the temporary basal helps keep his blood glucose under control if he is more or less active in the day. We sometimes use continuous glucose sensors, and set the pump so the basal is automatically cut off if he drops too low, which is very re-assuring at night. We couldn’t imagine using any other way to treat his diabetes.”

A year or so later we had this update:
“Alex is now nearly three. There really isn’t any better way to treat diabetes in a child (and especially little ones) than a pump. Don’t hesitate in getting one. They are the bees knees and you won’t regret it. There is more to learn than with injections, but it’s not that hard.

Alex has the pump in a belt around his waist. He goes on the trampoline, goes down slides/playground equipment, does all the things “normal” children do. We have glucose sensors too (Medtronic Enlites) and they are brilliant. They track his blood glucose really accurately and I can use the data to tweak his insulin levels and discuss his pump settings and care with his Consultant. The sensors catch high and low blood sugars before they get too extreme, which is particularly useful. They also drastically cut down on the number of finger-prick tests needed.”

Alena, 3

Alena, 3

Alena‘s mum told us “We were constantly fighting an up hill battle, no two days were the same, and we were in constant fear of her having a hypo episode in her sleep, wondering if she would be ok whilst we slept. We looked and tried many different continuous blood glucose monitors, but only one out-shone all the others for Alena and ourselves. The Dexcom seven plus was the only choice. She wears it everyday, it is so small and lightweight, can easily be hidden, she doesn’t complain when the sensor is fitted, and even continued to work whilst living in the swimming pool everyday on holiday! We simply could not live without it now, we know what is happening before it happens to her blood glucose levels, giving us time to treat before a hypo occurs; the graph display reassures us we are doing well with the insulin doses and we know what is happening every five minutes throughout the night. Thanks to Dexcom we can actually have a restful nights’ sleep again! We would highly recommend Dexcom seven plus to anyone and think it should be available for every child with Diabetes.”

Debra says: “My daughter went on the pump age 3 and we had a very active and busy little girl. It was life changing for us though as we really got our little girl back as MDI (Multiple Daily Injections) was really failing her health wise and restrictive to her busy and changeable life.”

“We’ve found the pump gives our daughter much more freedom to eat what she wants, as and when she wants, which is a major improvement, and it is far less painful for her to have a new cannula every other day as opposed to injections 4x a day. It is also easier when out and about to press buttons to bolus insulin rather than pull her trousers down and inject her. Her sugars aren’t really stable yet but she is honeymooning badly as it’s early days- we carb count etc carefully – however we can see light at the end of the tunnel with the pump. We have also found the features such as temporary basal rates / basal suspend useful in helping us deal with her roller-coaster sugars.

We were worried about how robust/practical it would be for an active then 3 year old but it’s been fine – in 5 months of having it the cannula has only been pulled out once accidentally. It is fine at school etc, we just twist the tubing round the pump to tuck it away and pop it in her pump pouch.”

“My daughter Daisy is nearly 3 and started on a pump last October, and we have found it brilliant – with the little ones, it allows such a finer level of control with the insulin. Since going on the pump we have far less severe hypos and swinging levels in general. I remember on MDI it wasn’t uncommon for us to have hypos in the 1’s and 2’s and have highs in the 20’s. Now we rarely have either. It is also so much more flexible in terms of eating, what she can eat and when. I know there is some flexibility with MDI, but the fact that you have to inject each time makes it more of a pain I think.
She is a really active toddler – in fact she is more of a tomboy than her older brother!! But so far we haven’t had any problems with the pump in terms of this. She also just treats it as a normal part of her. She doesn’t fiddle with it (you can lock the keypad anyway) and she is almost quite protective of it, always asking for it to be put back on immediately after bath and swimming (you simply unclip it for these things). Personally I would say go for it, we wouldn’t go back and I can’t imagine Daisy would want to either. We have found it has given us our little girl back and we have so much more level of normality than we had before.”

“E was diagnosed nearly two years ago now and we went onto a mix which was just AWFUL. I don’t think we got her down below 20mmol for 2 months, I can’t believe we put up with it either. We then went onto MDI which was ok and her HbA1c was 7.5% which was apparently in the top 10% of children at our clinic, but it masked all those hypos she was having. Frequently we were going from 20mmol to 2mmol within an hour, giving her extra food to actually give her 1u of insulin, not being able to give her extra food if she wanted it because of the fact we would have to give her another injection, dealing with hypos in the night – awful ones as the difference between 3u and 3.5u of levemir were too great.

Her control, so so so much better, and the long term prognosis is much better as we are much more able to control hypos and hypers. She can eat what she wants when she wants, with obvious healthy lifestyle parameters! Being able to alter basal rates is such a godsend as well as give corrections and insulin at 0.025u increments.

The pump is a visible sign of her diabetes, and it does takes time to learn – you have to invest time and effort to really get the best out of it. But the pump has revolutionised our lives. That is a pretty bold statement but totally true, I cant support the drive for kids with pumps enough. It’s not perfect, but is the most perfect thing out there!”

“My little girl C is three and went on the pump immediately. She has a twin brother who likes to sumo wrestle her… but no problems. He’s detached the cannula ONCE in 15 months.
I would say that the improved long-term prognosis of being on a pump outweighs every other reason both pro and con. I don’t really see why, if you look at it coldly in terms of giving the best medical treatment, any mum would actively avoid it.”