Opinions on insulin pumps please!

[Chammy]

Hi everyone,
My 5 year old step daughter has recently been diagnosed with type 1 diabetes after displaying classic symptoms. As a family, we're actually coping really well so far. No fuss with injections or finger pricks and her school have been amazingly supportive and pro active with managing her condition. All round it's pretty much thumbs up!
However, after a visit to see the consultant yesterday we've been introduced to the idea of using an insulin pump. We have no experience of these and only have the dreaded "Google" facility to research it which is a mine field of conflicting evidence and sales pitches by different pump providers.
Does anyone have any advice for us please? It would be great to hear about peoples experience of them. Is the process to set up the infusion site very painful? Has anyone experienced skin infections? Has wearing a pump improved or hindered life style?
Any input is greatly appreciated!
Thanks,
Chammy

 

[catherinecherub]

Hi chammy and welcome to the forum.

I'll bump your post up for some responses.

 

[catherinecherub]

bump

 

[Danaemac]

Hi @Chammy I am 33 yrs old and was diagnosed type 1 at 15 with hormones and everything else going on I really rebelled but around 3yrs ago I gave myself a massive shake had diabetes complications with my eyes and kidneys setting in and I went to see a DSN in my now home town that I had moved to 4 yrs previously a pump was originally mentioned in June 2013 after a struggle with getting bs down with shift work and poor eating habits and rightly or wrongly I dismissed this as I wasn't ready to be reminded every day that I had diabetes and didn't want to be continually attached to something however I then found this forum which I find fantastic and such a crutch, full of useful information and full of friendly knowledgeable people who have all been there and done it I read some of the posts did a Lot of soul searching and finally decided ok lets do this lets try it I spoke again to my DSN who was very supportive and put me on the path in the November I completed a carb counting course where I met a group of people a few of which I would say are very good friends who I attend all hospital appts with (any excuse to do lunch ) and realised that the more effort I Putin the better my life would be it was my choice I did the research I got the info on the pumps provided and mulled over everything I got signed off for my pump and picked animas vibe and on the 6th May I started pumping and my life has never been better no hangover hazy feeling of lantus stable bs (except this weeks kidney infection ) and the flexibility of eating when I want . My mum also for the first time in 15yrs has stopped asking how my diabetes is (I've been married 7yrs )this was a big thing she can relax as she sees I am in control giving your step daughter the knowledge and power to be in control when she is that little bit older
The infusion sets are very easy to deal with a few actually come with insertion devices and get changed every 2-3 days skin infections nothing but I do have a jar of bio oil for the scarring but this is very rarely needed There has really been no issues my DSN asked me if I would give my pump back and the definitive answer was a no from me and the other 3 people in the room my life has been transformed and all my friends would say the same definitely do your research it's not for everyone but I would never be without it now and I probably would have been in hospital tonight had the support the education and the pump not been part of my life

This is not meant as a sob story about turning my life round but it has made such a difference I now have the lowest hba1c I have had in the 18yrs since diagnosis at 50 or 6.8% in old numbers I have a new job and a new found energy that I had forgotten about for the 15yrs previously
Don't get me wrong it can be hard work with testing and checking and rechecking but all worth while for the quality of life i now have


We are all here to help with any questions you may have

Danae

 

[Chammy]

Hi Danae, thanks ever so much for your reply. It's great to hear that using a pump has made such a positive difference to your life
I think one of the reasons we're unsure about whether it's the right choice for our little one right now is a case of not wanting to rock the boat if that makes sense? She's only having a small amount of insulin at the moment due to the honey moon period and is coping really well.
I can totally identify with your comment about not wanting to be reminded of your diabetes constantly as this is one of the issues we have too.
I guess we need to do a lot more research to make an educated decision for her but at the end of the day we obviously want to make things as normal and easy as possible all round.
Chammy

 

[Danaemac]

@Chammy personally I would say all ur lives have been turned upside down and to make things as normal and easy as possible for your step daughter my instinct and with the knowledge I have I would say give me that pump it gives them independence it allows them to take control of things and let's them get used to dealing with there diabetes from a younger age than you would possibly allow using injections it will also lessen the chances of complications later if well controlled from the outset as for the amount of insulin I have been told this often reduces when you start on A pump I have shaved 30 units off my total daily dose and some pumps will deliver 0.25 of a unit unlike a pen which will be 1 unit 0.5 if u are lucky research Is the key ask your diabetes team what pumps are available I know Roche will send you a pack which is very good regarding their pump which probably would have been my choice if offered im my area animas and medtronic both have websites with information on their latest offerings I am unsure on omnipod it was never an option for me.
As a thought and I'm not pushing here or guilt tripping or any of that but all your lives are upside down just now learning to deal with this would dealing with a pump now and cutting out the mdi cause too much strain? Can you possibly talk to your stepdaughter about it and see what her thoughts are she may surprise you all and think it's pretty cool

Hope this helps

Danae

 

[pdjenna]

Hi

I use the animas vibe (for last 2 years) and CGM g4 sensors (since jan) - the freedom and huge improvement in my life is unbelievable! I think they work so well for me because i lead such an active life - I play a huge amount of competitve sports, work as a Theatre Nurse and have two demanding dogs (and a husband lol!). I really wish it had been available when i was teenager in particular, as that is an extremely difficult time to keep good control. The work that goes into the pump can be quite heavy, particularly at the early stages but totally worth it and as she gets older and takes more control of her health the pump has added benefits of "not forgetting" injections and as the information is downloaded, better advice can be given over insulin rates and insight into patterns etc. I know that 5 is young, but your daughter will probably be the best person to decide if she want this. I know that in my area, a lot of children wear a dummy pump to see how they and their families like it??

good luck!

 

[Chammy]

It's great to hear such positive experiences guys!
You're right @Danaemac, it's all been a bit of a steep learning curve for us. It's a lot to take in and we're obviously worrying about making the right choices.
A dummy pump sounds like a good starting point @pdjenna. I'll certainly enquire about it.
Thanks so much for all your advice, it's great to hear from people with actual experience of this

 

[Danaemac]

I had never met another type 1diabetic until I went on my carb counting course now I know loads , the network of people your stepdaughter will meet at clinics etc will be invaluable to her and yourself something to a degree I wish I had but at 15 I was put into the adult service so had no one your family will meet other families talk to them get there views you may even meet some pumpers who can let you see things feel things and give you first hand experiences, don't be afraid to ask questions I know I like answering questions and educating people about my condition and treatment and I think generally diabetics are the same ( on here they definitely are ) this is some of the best research you can do, build yourself a support network this too will help if any of you are struggling as we all know it can be difficult and use this forum it's such a help to all of us everyone will have been through something you are experiencing and will have an answer whether medically approved or otherwise

Let us know how you get on

Danae