# Pump



## MrsBoyle (Aug 8, 2010)

How do you go about getting the pump


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## Gemma444 (Aug 8, 2010)

Hi 

Speak to your team about it. The best people to get advice from about getting pumps are Adrienne, Bev and Becca. They can give you some great advice as it is somtimes hard for people and some parents have had to transfer hospitals via their GP to get their children pumps. I would love jack to have a pump one day. I really think it proably be a benefit to Dylan as you only change the cannula once every 3 days (no more needles) and with Dylan being so small a pump can administer a very small amount of insulin unlike a pen needle. 

Have you asked your team about different insulin regime they use and if the offer kids pumps? 

Good Luck.


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## Gemma444 (Aug 8, 2010)

forgot to ask if you have figured about how to use the email list yet? You would get lots of advice about getting a pump on there. 

Gem x


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## MrsBoyle (Aug 8, 2010)

Ive not spoke to anyone yet about it.
Just been speaking with my grandad and he is type 1 he said his levels have never been over 16 and he was told a few month back that he has protine behind one eye and somthing eles behind the other and will prob go blind in a few years.
But every tea time reading for Dylan is from 8 on a really lucky day then upto 18 
Just he has had it now for a year in december and i think his levels should be perfect by now.
And with him having such a bad time doing his injections.

Today took us 15mins and he moved before i got it in so we got his knee.


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## bev (Aug 8, 2010)

Dylan fits all the NICE guidelines criteria. He has been on MDI for over 6 months. He is needle phobic. His levels are unpredictable. Does he have a lot of hypo's as this is also one of the criterias.

What is his hba1c? If you want him on a pump - ask your Consultant. If he says yes - great - he wont have to wait very long. If he says no - ask for a referral to another hospital who are pro-active about pumps. They cannot refuse you a referral and they have to tell you what hospital use pumps that they refer you to.

I think as he is under 5 then he might have more of a reason for the pump (Adrienne would know this) - but if it is taking you 15 minutes to inject - then clearly you would benefit from a pump as its only every 3 days - but for us its every 2 - but its still a lot better than 4 or 5 injections a day and all the upset that causes for a small child. Control on the pump for us is much much better as you can do 1/40th of a unit as my son is insulin sensitive and this is why he never got on with MDI.Bev


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## Gemma444 (Aug 8, 2010)

Glad you came into this bev. i only know what i have learned and read from the email list.

gemx


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## MrsBoyle (Aug 8, 2010)

Since the 2nd of Aug 
he had 12 units in the morning and has 3 and a half for tea he woke up at 3.8 then lunch was 11.3 and tea time was 18.8

the 3rd Aug  
same insulin morning was 4.4 9.20 he was 3.1 lunch 10.2 tea was 7.9

4th same amount of insulin
 6.4 lunch 2.5 tea 12.4

5th was same again 
8.3 lunch 2.6 tea 10.3

6th 
was on 11 and half units and tea 3 and half units and was 3.8 9am 2.7 lunch was 3.7 tea 9.6

the 7th was on 11 units and 3 and half for tea 8.3 lunch 6.4 tea 13.1 

8th same as insulin 6.8 lunch 4.8 and tea 17.4

Just showing you his sugar levels and how up and down they are


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## MrsBoyle (Aug 8, 2010)

HIs last hba1c was 8.5


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## bev (Aug 8, 2010)

Well he is suffering hypos' daily, his hba1c is over 8 (which I think is the cut off point), he is needle phobic, and you have tried MDI for over 6 months with swinging levels. I would say he fits all the criteria and if you want a pump - it should be offered to you. Are you thinking about asking your Consultant? If you are, make sure that you have all this written down and quote it to him and tell him that it is in the NICE guidelines and as Dylan fits all the criteria - when can he have his pump. If he agrees that the pump would give better control - he CANNOT use funding as an excuse for going on a waiting list - so dont let him try to fob you off. If you dont get a positive response - let us know and we can direct you on what to do next.Bev


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## MrsBoyle (Aug 8, 2010)

Yeah we are deff thinking about asking about the pump now. its getting harder and harder to inject him and his legs are just getting cuts on.


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## Sugarbum (Aug 8, 2010)

Have you had a look at the Input website MRsBoyle? It might give you some support and ammunition.

http://www.input.me.uk/

Good luck x


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## MrsBoyle (Aug 9, 2010)

Would we have to pay anything for the pump or the pump parts?
And does attatching it to Him hurt as much as haveing an injection?

Its getting worse injecting him took 20 mins today and lots of tears. i really thought that by now it would be much easyier but its getting harder


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## bev (Aug 9, 2010)

Hi, you dont have to pay for anything as its all provided by the PCT. If you feel that injecting him is becoming too stressful and is upsetting him - ring your team up today and ask them for an appointment to discuss it all. It sounds as if you have your hands full and Dylan is becoming very distressed by it all.
The set-changes might hurt him at first - but I think a lot of it is phsychological rather than actually hurting. I do know of 1 year olds on pumps - so it can be done and it might be better to get him used to it whilst he is little and before he starts school etc.Bev


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## MrsBoyle (Aug 9, 2010)

My husbands ringing them up today as i dont think i can.
Been looking into and will prob need to go to another hospital. but id rather do that than cut his legs open


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## Becca (Aug 9, 2010)

MrsBoyle said:


> My husbands ringing them up today as i dont think i can.
> Been looking into and will prob need to go to another hospital. but id rather do that than cut his legs open



Hiya, think i've just seen your post over on CWD?  Are you in Scotland?  I know funding for pumps is harder in Scotland but not impossible.  It might mean transferring to another hospital but if it means that you can get a pump for Dylan and better care and support then i would 100% say go for it.  

It sounds like a really horrible time at the moment for you guys,  my heart goes out to you <hugs> x


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## MrsBoyle (Aug 9, 2010)

No we are from north west england.


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## Becca (Aug 9, 2010)

MrsBoyle said:


> No we are from north west england.



Ahh ok lol!  Well in that case....Are your team pro active with pumps?  Sorry haven't read posts as have been away   x


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## Ruth Goode (Aug 9, 2010)

I will be interested to know how you get on.  Carly's level is up and down too so she will be starting to have 4 injections a day soon - we will see how they get on


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## MrsBoyle (Aug 9, 2010)

I dont no they have only ever said about the mixed insulin that he is on now. my couisin was 15 when he got dx and he was on mixed until he got to 18 now he is on 4 a day.

But i cant even manage 2 a day with Dylan My husband cant work around Dylans insulin times. so once he finds a job im stuffed doing it on my own. 


Today they have said to up his insulin to 11 and a half as yesterday he was on 11 and was on 17.8 for dinner but today on that extra half he has had a low of 2.1


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## Adrienne (Aug 9, 2010)

Hiya
Well there I was on the other thread talking about pumps and never even saw this one.  Dylan definitely qualifies for a pump under the NICE guidance and he can skip right over the MDI stage and go straight onto a pump.  

Try and join the other email group if you haven't already.  If you have, then what is your name so we know who you are so can help?    What hospital are you at now?   What area are you in, I ask that as someone on the email group will no doubt know a hospital near to you that does do pumps and can refer there.

One of the hardest things to get your head around for lots of people is that the medical team is not always right.   There are many great teams in the UK  but for every one great one, there are 5 appallings ones.  Any hospital, in my eyes (and others) who still have mixed insulins fall in that latter group for laziness and lack of knowledge and training.  All children including babies should be on MDI or pumps and all carb counting (which is easy so don't panic about that at all - it is a matter of getting the hang of it that's all).    

You are allowed to question everything your medical team says and does.   For example what is their reason for using mixed insulin with Dylan, I would love to hear that one and maybe you should ask it.   I have heard reasons like 'it is easier for the school' ie no lunchtime injection etc which is awful.  It is also a money thing as well as cheaper due to staff time etc.

If you want our help about how to change hospital or anything please ask, we can help you, we have helped many families change and get better care.

Ask any questions you want at all.


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