# pumps in children - is it worth fighting for?



## ruthelliot (Jan 3, 2010)

My 2 and1/2yr old son was diagnosed type 1 just over a year ago. Since then we have had the usual ups and downs and to be honest i'm not sure if his control is classed as good or not as we hear so many different opinions. We have shown an interest in a pump for some time and have been advised that while it may well not improve control and certainly wont make my life easier it will give him a better quality of life - obviously this is our number one concern. Having been referred to another nearby hospital as ours doesn't have the facilities we were told it was practically a given he would get a pump. There has now been a complete u-turn with the other hospital refusing to accept him as a patient as they say they have enough of ''their own'' kids on the waiting list. I'm assured I will have a real fight on my hands if I want to take it further and while I am more than willing to fight for whatever my son needs I just dont know if I would be doing the right thing?? any thoughts would be appreciated.


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## Becca (Jan 3, 2010)

Hi

For Rose, most definately, without a doubt yes!!  The pump has changed our lives dramatically.  I know it is different for all children and some children can achieve good control on MDI or 2 or 3 injections, but for Rose it was def. the only way.  We moved hospitals because our local one was not very good.  Some parents on CWD UK travel miles and miles (one comes from Devon up to Leeds for their child's clinic) to get pumps.  

Have you had a look at INPUT:  http://www.input.me.uk/index.php?page=home

and also:

http://www.childrenwithdiabetesuk.org/index.php?page=insulin-pumps

I did a talk as well about Rose's quality of life, i'll ahve a dig about for it.  Rose's HB1AC has improved a great deal on the pump but it's def. the quality of life.  I am a great advocate for pumps, but again, it is down to the individual child and family and reasons and only you know what is the right thing.

I'm sure if the pump is the option you go with then there are lots of people, me included, that will help   Will have a look about in my files...


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## Becca (Jan 3, 2010)

Found it!  Was written in June 2008

Rose, 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 ****, 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, our 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 Rose – 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 Rose.

 On injections, Rose 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 Rose’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, Rose needs set changes but they are every 3 days.  Not 4-5 injections a day.

 The last point would be that on injections if Rose would go around a friend’s house for tea they would want a snack after finishing school.  This invariably would be an ‘unhealthy’ snack.  Rose 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 Rose 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 Rose 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.

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 Rose.


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## ruthelliot (Jan 4, 2010)

Becca,
Thank you so much for your reply. It just reinforced everything I was already thinking. Its reassuring to hear people have been accepted to hospitals from far afield as i suspect we will have to go begging across Scotland! We have another appointment with our consultant tomorrow so I'll def keep in touch - your help would def be appreciated.
Ruth


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## Becca (Jan 4, 2010)

Are you on facebook?  This is one of my friend's page, it's iPAG (Insulin Pump awareness group for Scotland)

http://www.facebook.com/group.php?gid=60586160535

"Please join our group to show support for our aim to raise awareness of insulin pump therapy and campaign for equal access throughout Scotland. Thanks!

iPAG Scotland (Insulin Pump Awareness Group - Scotland) is a new group made up of individuals who are either pump users, potential pump users or parents of children with Type 1 Diabetes interested in Insulin Pump Therapy.

We have formed the group to raise awareness of pump therapy and to highlight the lack of availability of pumps in Scotland. We are affiliated to Diabetes UK Scotland.

Anyone who would like to find out more or become part of the group please contact enquiries@IPAGScotland.co.uk.

We are particularly interested in hearing from Type 1's in Scotland that have applied for a pump and have been refused, encountered delaying tactics or have been informed that they qualify but that funding is not available. We would also like to hear from you if you have a pump!

Please note - The information presented on this group is for general use only. If you have any questions or concerns about individual health matters or the management of your diabetes, please consult your diabetic care team. Products identified on this website are not necessarily endorsed by IPAG Scotland or Diabetes UK"

HTH


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## Mel (Jan 13, 2010)

*pumps for children*

Hi 

Definatley go for a pump ,my daughter was diaginosed 2 years ago aged 11 as T1 and has been a nightmare to control , we were offered a pump as she is very sporty, active and had swinging BS resulting in a High HB1AC.

She is on the Animas 2020 and although its not all plain sailing she says it allows her to be normal,the food listing allows her to add in school meals snacks and foods she loves/eats regualrly.It allows her to be more spontaneous which is important now she is a teenager.

It has the benefit of being the only pump which is waterproof, as she swims at a club its vital. Only recently when she was swimming someone asked her where they could get her MP3 player!


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## ruthelliot (Jan 14, 2010)

Thanks for the input guys,
Our fight for a pump is just in its earlieast stages i fear. Our current team have backed off having fallen at the first hurdle but spurred on by friends in the medical profession and by the info we have found here (thanks becca the info you gave was very useful) we intend to continue fighting. I think our last visit just over a week ago where there attempt to 'tweak' things to improve his readings sin 9 hypos in the next 6 days has spurred us on!
will keep you posted
ruth


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