Minimum age for pump

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Martin-Parent

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Hi all,

Our 22 month old boy was diagnosed type one just under 2 months ago (wow, it seems much longer than that!). We are well into carb counting but his readings are so difficult to regulate. The difference between 1 and 1.5 is huge so he is either high or low all of the time. We have just changed his lancet to the morning from the night so that might help a bit, but the subject of pumps was raised by our DN.

She has no experience of them and has referred us to a neighboring team in Manchester. They have told us that he is too young to qualify for a pump and we should wait until he is 3. We are going to contest this but would appreciate some advice first.

Thanks.
 
Martin-Parent said:
Hi all,

Our 22 month old boy was diagnosed type one just under 2 months ago (wow, it seems much longer than that!). We are well into carb counting but his readings are so difficult to regulate. The difference between 1 and 1.5 is huge so he is either high or low all of the time. We have just changed his lancet to the morning from the night so that might help a bit, but the subject of pumps was raised by our DN.

She has no experience of them and has referred us to a neighboring team in Manchester. They have told us that he is too young to qualify for a pump and we should wait until he is 3. We are going to contest this but would appreciate some advice first.

Thanks.
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Hi Martin,
some children are put on a pump from birth. The pump team are wrong.
Contact John Hughs at Advanced Therapeutics he is well versed in small children and pumps.
http://www.advancedtherapeuticsuk.com/
There are Mum's on this forum with children younger than 3 on a pump and doing very well.
Hope things improve soon for your little lad.
 
Hi Sue is right, we have had Millie on the pump since 23 months, there were no issues with her age with our Team and they are not any leading UK Team by any means. There are babies and infants on pumps in the UK, some of which are on the CWD mailing. Don't let them put you off with the age thing, all the more reason IMO with the tiny amounts they are on, goodness knows how you can manage as well on injections with that point alone.

Do contest and good luck 🙂
 
Hi Martin,
another thought for you is INPUT http://www.input.me.uk/ what they don't know isn't worth knowing 🙂
 
I would contest this all the way - the problem you state is exactly the reason pumps work so well for young children - half a unit was way to much of a difference . Bens diabetes like all kids I guess is still very difficult a lot of the time but the difference on a pump is life changing. What I would say is if the team in Manchester are so I'll informed or unhelpful is there any other hospital you can go to? We had to fight hard to get a pump so if you need any pointers lot to chat about it feel free to send me a message.
 
Hiya,

Completely agree with what everyone has said so far - fight fight fight for that pump 🙂

Out of interest, I've just heard of a little boy age 15 months (diagnosed age 9 months) who is using a pump, and has just started using diluted insulin in his pump - so he is using insulin that is 5x diluted. I can't even get my head around the maths of it all!
 
Update...

I have spoken to our DSN and she is behind us getting a pump but has no influence on the final decision. We have an appointment with the specialist who will be able to "start" the application process of us getting a pump but that appointment is not until 8th March and we are not sure whether we will be able to make that date or not. He only does one diabetes session per month. The first one we were booked into the wrong day so we only got to see him for 5 minutes rather than 30 minutes. February we are on holiday on his one day per month. I am going to phone today to see if we can get an appointment outside of his precious one day per month, but it seems that the fight for a pump isn't going to be easy.😡
 
Hi Martin,
Just a thought for you. Check and see if your son's ped does clinics else where.
My consultant holds clinics in the surounding area, ie he comes to us rather than us to him. Due to the SW being a large area plenty of cottage hospitals to use 🙂
 
Have to say, my chap only does a pump clinic 1 day a month where I go, which is, if you like, a satellite of the main hospital. Dunno what clinics mine does at the main place - but it could certainly be worth you having a try?

Ring his secretary! LOL .... or of course if you've got a bit of disposable ..... and he does private work ... just for an 'initial' consultation ..... nudge nudge. (I've had my old NHS D consultant come and see me whilst I was an inpatient at a BUPA hospital for an entirely unrelated operation and I never saw the actual bills as they went straight to BUPA - so no idea whether it cost em or not)
 
Hi,

I've heard and seen examples of neonates put on pumps. Tends to be mostly in America that happens but it does.
 
Martin-Parent said:
Update...

I have spoken to our DSN and she is behind us getting a pump but has no influence on the final decision. We have an appointment with the specialist who will be able to "start" the application process of us getting a pump but that appointment is not until 8th March and we are not sure whether we will be able to make that date or not. He only does one diabetes session per month. The first one we were booked into the wrong day so we only got to see him for 5 minutes rather than 30 minutes. February we are on holiday on his one day per month. I am going to phone today to see if we can get an appointment outside of his precious one day per month, but it seems that the fight for a pump isn't going to be easy.😡
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HIya Martin

If your consultant says yes to a pump then the PCT cannot refuse to fund it, it is that simple ! There is no reason you cannot write or email your consultant and say you have looked into pumps and know this is the best way forward for your son and your family for quality of his life and family life and could he please start the ball rolling. You could say that you really don't want to wait until your appointment in March as you understand this could take some time so sooner the ball rolls the better.

INPUT are the best people to do to for info on pumps. They have all the pumps on their website as does the childrenwithdiabetesuk.org website.

There is no lower age limit. There are babies under the age of 1 on insulin pumps (albeit a different medication inside but that is irrelevant). There are some hospitals now with great foresight and put all diagnosed children on pumps immediately, no messing around with any injections. Best way if you ask me. Closest thing to a pancreas in the world so why would you not have it. Go for it. 🙂
 
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