Cooper is getting a new toy
Tassie Mum Leah calls to her son while she is on the phone to JDRF. “Cooper, come and have some more sandwich! He’s actually on his way to a hypo right now,” she says.
Cooper is a bright, active, “beautiful” seven year old boy who has had type 1 diabetes since he was three. Back then, while visiting a sick brother in hospital, Cooper picked up a virus. Leah says he never really recovered.
After a high temperature, Cooper started wetting the bed and consuming litres of water every night. He was quickly diagnosed with type 1 diabetes and spent a week in hospital on the general ward, while he recovered and his parents learnt about their new life of needles, fingerpricks and hypos.
The hypos are a worryingly frequent event in little Cooper’s life. Leah says sadly that his control is not very good. “Cooper is very sensitive to insulin. He’ll run really high and the doctor will increase his dose by just one unit to bring it down, but then we run into a spiral of hypos. There is no happy medium.”
As a result of the challenges with his insulin sensitivity, Cooper is currently having two or three hypos every day. Leah counts herself lucky that he has only ever had two overnight hypos, but luck has had little to do with it. She is vigilant at night with her son.
“I check him every three hours through the night because I’m so worried about hypos. I managed to combine it with feeding the baby so I was able to squeeze in a little bit of sleep!”
Cooper’s life with type 1 diabetes is about to change dramatically. The Australian Government has announced a big increase in the subsidy available for insulin pumps, which will make the technology much more affordable for families like Cooper’s.
The Type 1 Diabetes Insulin Pump Program was launched in 2008 and provides a means-tested subsidy towards the purchase of an insulin pump for children under 18. In Australia insulin pumps can cost up to $8,000, making it a medically desirable but unaffordable option for many without private health insurance.
Children under 18 with type 1 diabetes will now be eligible, on the recommendation of a health professional, for a significantly increased subsidy of up to 80% of the cost of an insulin pump, up to a maximum of $6,400. The subsidy will be means-tested and based on a sliding scale reflecting family income.
Research shows that insulin pumps can help in the management of type 1 diabetes by minimising the dangerous fluctuations in blood glucose levels that lead to complications.
Insulin pumps also alleviate the intrusive daily regime of management and injections.
Cooper’s need for supervision of his diabetes is ’round the clock’, so it is clear that an insulin pump is going to change the family’s life.
Leah has always made excuses for him to avoid birthday parties, and Cooper has never stayed overnight with grandparents or friends. Leah says “It is understandable that most other people don’t feel comfortable giving him needles and it’s a big responsibility to hand over.”
Cooper will still have type 1 diabetes after he gets an insulin pump and he may still experience hypos. But his diabetes management will get a lot easier. Insulin adjustments on pumps can be made in 0.05 unit increments.
Cooper is excited but nervous. Currently he has all his needles in his bottom, because he is very small and with no fat on his tummy, it quickly gets lumpy when he has injections there. The doctor has reassured him that he can have his pump site on his bottom too, minimising the pain of the site change.
For the next few weeks, he will watch Leah’s friend who has type 1 diabetes do a bolus dose on her insulin pump for her coffee and cake, and imagine all the things he will be able to do for the first time when his insulin pump arrives.
The insulin Pump is the best thing we have done for our son who is now 5 and a half. We put him onto his pump at 3 and not looked back since. Good Luck to Cooper with his new pump and good luck to his mum Leah with it all. I know the feeling she has of not having the control over the diabetes and all the challengers that it brings. Our son was diagnosed at 16 months old and it certainly changed our lives.
Insulin pumps are great but lets not lose sight that the management of the disease is still around the clock for parents of small children on a pump. My 6 year has been on her pump for 2 years now and yes it provides more normality in regards to eating and routines. It has not unfortunately reduced the amount of night time testing or made sleep overs any easier. I seriously love the pump and would hate to have to go back to injections. We do need to be careful however not be overstate what the pump will bring a family. Only a CURE will bring what we all are looking for.
Our little boy was diagnosed in October 2009 he was only 18 months old. We were told he was to small for a pump by the public hospital, so we went and seen our private doctor and 2 months later we had a pump. I totally agree with the comment Always hoping posted it has made his eating habit better but it is still hard to manage especially at night. Myself and my wife are still doing test 4/5 times a night and we both are still working full time. We also have a four year old boy as well and thankfully he is fine. They both run us off our feet, I know it will get easier though and can't wait for the day it is cured and our kids can enjoy a normal day without Diabetes.
My son who is 7 yrs old has had diabetes for 3 months and it has been the longest 3 months of my life. He is very good at understanding what diabetes is and how it has changed his life and his families. He is the only person in our house that is allowed to inject his needles. He wants to own that responsibility – which is quite big for a 7 yr old. He is probably a little underweight for his age so he finds it hard to find the excess skin that he can inject into. I have been advised that we aren't allowed to get a pump until he has had his diabetes for at least 2 years. Is this correct?
Pumps are great. It's wonderful the government is helping those famillies who need it. However the 24/7 monitoring won't change. Is the government going to make the continuos glucose monitoring affordable for everyone too? The pump is only part of the answer for blood sugar control and diabetes management. When will companies like Medisense make the pumps and consumables affordable so the government will be likely to subsidise. Cos let's face it companies do make an incredible amount of money out of our children's condition.
Insulin Pumps are great, my 12 year old son was diagnosed with Type 1 when he was 2 and went on the pump at 4. After all these years he has now gone back onto needles, the reason being is he doesn't want to have Type 1 Diabetes anymore and was constantly eating and not bolusing for his food, so he was going up and down constantly and ended up with a hba1c over 9. So I suppose what I'm saying is that the pump is good, but as these young kids get older and have to take over the management of their diabetes, sometimes it can be too much and needles can sometimes be easier. Although in saying this, he will go back on the pump definitely, but just has to get over this hurdle. Good luck to all who have children with this disease, no one really understands how hard and difficult and trying this disease is unless you live through it and hopefully there will be a cure one day.
My daughter was diagnosed Aug 2005 at age 4, and we got the pump in July 2007. From my understanding, it can take a couple of years for all the beta cells to be completely destroyed and during this time, control can fluctuate quite a bit. We absoulutely love the pump, and life is so much easier as we seem to be living in the moment, as the pump takes care of the long term planning, and we just manage the food. I have had to change the settings three times in 2 and a half years to keep up with her growth, and the pump holds three (or more if required) settings for the basal rate – we choose which one we use depending on her activities / sports that she has on that day. We love the pump – but still want a cure….
Our daughter had diabetes for 5 months before she started on a pump nearly a year ago. The big bonus for her was that she can now eat when she wants to which is necessary for the amount of sport she does. One public hospital where we live didn't support pumps so we changed hospitals. Get another opinion, and good luck
My daughter also went off the pump, initially because the pump broke down and she had to start on needles whilst waiting for a replacement pump. She opted to stay on needles for 3 weeks but then woke up one morning and decided she wanted to go back on the pump. It is her disease, the decisions are hers, and we will support her efforts at dealing with this horrible disease whatever way she can.
Not at all. It all depends on your hospital and how soon they can fit you in to train you on carb counting and pump use. My little boy has just turned 5 and has been on the pump for 3 months, going on it about 12 months after his initial diagnosis. Thankfully we only have to do 2 tests over night – one about 10pm when we go to bed and one at 2am. How others cope with sleep deprivation from multiple tests, I don't know. Good luck with your chosen management path.
i'm 9 turning 10 soon i was diagnoised with diabetes when i was 2. I have had the pump for four years i love its qualities it is brilliant. i use emla to reduce the pain inserting a new site. Mum iinserts my sites for me but I test my own BGL's and I give my own meal boluses and correction boluses. At school I put a sticker with the carbs on my lunch box, I have a wonderful SSO who Supervises all BGL's and boluses. Sometimes If I'm high I can't play outside for recess but the school finds something for me to do like play on the laptop and im not even going to start about the sleep-ins (it is easier to relax with the pump) I dont have to eat when I'm not hungry, and i can have seconds and threes and fourths……..
Hi Mum here, yes the pump is still lot's of work and I still check him at least once at night, but he's happier, he has choices, it's easier to keep on top of the difficulties of diabetes. And It's getting a little easier each year.
It would be alot easier with a continious glucose monitor. Wishing you all the best.
We got a pump 6 months after diagnosis – and was on the waiting list after 4 mths. He sounds very brave
My son, also Cooper ( 8 years) was diagnosed 4 years ago and has been on a pump for 2 years now. The pump has changed our lives! Diabetes no longer rules our lives. Cooper has forgotten what it was like to have to do twice daily injections, but I will never forget! Good luck with everything…I am sure that you will love Cooper's pump too.(it becomes a part of the family). Cooper's is named Bart, only becuse his his original request to call it the ' fartamatron' wouldn't allow that many characters on the screen and I wouldn't let him call it 'fart'- typical boy.
HI, our daughter is now 7 and was diagnosed at 17 months, the days with flavoured milk in her bottles during hypos and the cotton wool balls in the nappy to test the Ketones, seem so long ago…. she has been on a pump for nearly 4 years and it changed our lives as well…..
We have two boys with diabetes, Rogan diagnosed aged 4, now 9 and pumping for 2 years, and Cameron diagnosed aged 6, now 8, pumping 2 days after diagnosis, nearly 2 years ago. My husband was a 20 year veteran of diabetes, and it took both the boys being on one before he decided nearly a year later to go on one too. When I tell people about pumps, I say that they are wonderful, because they give you back a life. BUT, you need to put the work into them to get the results. Thanks to our amazing Educator (Deb Foskett of InsulinPumpAngels.com.au) we almost never test during the night. We have their basal rates so finely tuned, changing every 2 hours if needed. Nighttime hypos are extremely rare and thankfully the boys wake up if they have one, but the hypos are usually predictable in hindsight (delayed sports related, recovering from illness). Deb has a method taught by Yale University in the US, and only used by a few hospitals and educators around Australia. Because of her expertise and our hard work, all of their HBA1cs are now under 7.0! Good luck with your new journey, and lets all pray for a cure in our children's lifetime.
Leah your story sounds so like my daughters diabetic journey so far. She is now 9 & was diganosed at 6 years old. she is also extremely sensitive to insulin. We also test thru the nite due to many hypos & 1 diabetic coma.
However last Oct 09 she was changed from Lantus to Levemir and the results have been amazing.She has gone from a 2 to 3 hypos a day to approx 3 per week & the number of hypers has also come down. She has Levemir before dinner & Actrapid before breakfast,lunch & dinner. We did not go with a pump as she is Very certain she does not want one. So good luck & if u have'nt already try changing insulins.
My daughter Cassidy was diagnosed at 13months old. Going through the "terrible two's" on 4 injections a day was an absolute nightmare!! It's hard enough teaching toddlers good eating habits, but just because they've already had their long acting insulin, doesn't mean they get custard for dinner every night!! Our doctor found Deb Foskett, and life changed. We went on a pump just after she turned 2 and life is sooooo much better. She's now 4 years old, and will go to school next year. Pumps are hard work in the beginning, but very much worth it. I too don't get up during the night anymore, so if you put in the hard yards you will be rewarded with good BSL's and great HBA1c's. Being on the pump means I can manage her illnessess much easier and keep better control when she gets ketones. Good health everyone !!
I got a pump about three months after diagnosis, this year. Although I am 14, I liked to do my own needles and take control of it. The pump is great for that kind of thing, and my parents now let me do stuff. I am allowed to go over to friends houses after school, and have sleepovers. I love it.
Hi our son was eight years old when diagnosed and we had just moved from Cairns to the sunshine Coast and new no one. he was on needles three times a day untill we went on a pump six months ago. he is very active and sporty and trying to keep control of Hypos was not easy. he finds the pump better but yes it is a lot of hard work and education for all friends and family and school involved to understand and work it. After three years with Diabeties he has just had his first sleep over at a friends which is amazing, as very hard for other parents to want to tackle. we are pretty lucky and do not have to test often at night as his levals are always pretty spot on. A pump has made a difference to his life so best of luck with whichever way you go
Good luck, Cooper! I hope the pump is everything you have hoped for. Wishing you good luck and all the best in the future.
My daughter was diagnosed at 5 years old, for her 10th birthday she received a pump. She is now 14 and has gone back onto needles because she was just eating what she liked and not doing boluses. Her HBA1C is at 11.0. It was fantastic for the first 3 years and her HBA1C was only in the 7's. My son was diagnosed last May at the age of 6 and has 5 needles a day. He is doing so well with hardly any hypo's overnight (unlike Jessica), which I am crediting to Lantas. We borrowed the money for Jessica's pump and we used to panic about it getting lost or broken all the time. With this new subsidy it will certainly take the stress off when Callum wants to go on one. Good luck Cooper, I hope this helps you feel better everyday.
Hello,
My daughter just turned 4 and was diagnosed just under 8 months ago,at this stage she only has 2 injections a day,it used to be 3 but it was too traumatic ..Her levels are all over the place and the educator has talked about going on an insulin pump..I'm not sure what to do, the pump sounds great and I already do testing 7-8 times a day,so that wont change and I understand it is alot of hard work..I'm unsure if the pump will bother her being on her person the majority of the time and if the cannula hurts more than an injection.. Very confusing..Can anyone help me out with more info and if you'd recommend getting an insulin pump?
[...] via JDRF – Type 1 Diabetes Blog [...]
my son is 12 years old and was diagnosed at the age of two.. he does not want the pump…
i do not subscribe to supporting interim solutions. distractions such as the pump may result in complacency.
children have the right to a cure.
accelerated cure is where the government monies should be spent
… not in supporting profiteering pharmaceuticals.
Zangie, investage more about the pump on the medtronic website. We put our son onto the pump at 3 years old and have not looked back. As a family it has given us more freedom to do more. The needle is bigger than the injection but it's only done every third day compared to the twice a day. We use the meditronic mini med which we have found easy to use. Good luck with making the decision. You will hopefully find that she will take it onboard if you do put her onto the pump. Our son is lost without his if we take it for some swimming etc. It's become part of him. And he is very accepting of it.
My son was diagnosed November 2009 at 6 yrs old. He is yet still to unstable for the pump but is something we are looking into.
Hi
We have Deb as our pump educator also. I cannot speak of her highly enough. Her knowledge and down-to-earth approach to pump management makes everything 'easier'. As with what the others say, the constant checking and monitoring is not taken away because you use a pump. However, it does make my 14 year old son's life a little easier and gives him a lot more freedom with his friends.
If anyone who lives in south east Queensland is considering a pump, I strongly suggest talking with Deb Foskett – she is unbelievable!!!
My daughter was diagnosed in August 2009 aged 6 years and our lives were changed forever. She was on 2 needles a day and then in January she went onto the pump. At first it is very hard trying to learn basal rates and carb counting but now we would never go back to needles. We change the site every 4 days and use Emla cream to numb the site and the needle does not hurt her at all. She calls it her Pinky pump and her best friend. In February this year she was also diagnosed with Coeliacs disease which makes her food choices even harder. As Gluten free food is high GI we definately need the pump. We still have our highs and lows but her levels are more stable. We still check at night occasionally but the pump keeps her at a good level. Our fingers are crossed for a cure one day for this terrible disease so that our kids don't have to worry about diabetes.
Hi my 6 yo daughter was diagnosed 6 months ago and we are looking at getting a pump also. Can anyone give me pro's and cons of the different pumps. At the moment I am leaning towards the medtronic so we can have the cgl with it.
hi my daughter was diagnosed at 10 and was on 5 needles a day including 1 at school when she started high school she had 2 stay behind after everyone left just 2 just so she could have her needle and we were told by the time she was a teenager she would b on 7 needles so we decided 2 get her a pump we started fund raising but we were lucky we have a great diabetes educator who got us a pump that was donated by jdrf my daughter often hit vains when having her needles but very rare it hurt now she has a pump i would highly recommend an insulin pump its not a cure but 2 us it was the next best thing like your daughter ours were all over the place 2 but now the highs are a lot less