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Daughter 12 taken off pump

K

Kat Oman-G

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Evening. New to this forum.
Our local NHS have today taken our 12yo daughter off her omnipod pump and replaced it with novorapid and lantus pens. Apparently all children when 12 need to come off their pump and go on pens for 1-month. They have told us that if she doesn’t do this they will not let her continue with her omnipod! She was diagnosed at 2 and has had her pump since 3. She doesn’t know any different. She has major self confidence issues because of the diabetes and also coeliac and now this. She is now dreading going back to school. Has anyone else experienced this when reaching 12? We live in Cumbria. Thanks in advance. K
 
Sounds really daft, I have never heard of this, at 12 years old I would have thought this is just the time you need your pump, I live in France so I do not know the rules in the UK they may of course have a good reason but if this happens to all 12 year olds it needs to change, hope you get your daughter's pump back quickly
 
Maybe its to make sure your daughter can deal with using a pen in case the pump fails? Just speculating of course.

When I was 12 there was no option of a pump, I was on injections from day one (pens didn't turn up until my teens) so I have no experience.
 
Reactions: ert

Hi, welcome to the forum.

How were you notified of this change in treatment. & by who...?
 
Kat Oman-G said:
... She was diagnosed at 2 and has had her pump since 3. She doesn’t know any different. ...
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This is the problem. She has become totally reliant on a device that can fail. Sounds like using MDI for a month is a program to give manual treatment options should the automated technology fail. Children should be able to deal with it at 12. At this age, they also become more independent, spend more time away from home and need to be able to look after themselves. It is only for a month, after which she can get back on the pump. Not sure that a month is long enough to get good results, but I would look at it as part of the ongoing constructive learning process.
 
KK123 said:
I wonder if it's anything to do with puberty?
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Nope, I think @MarkMunday has it, it's so that she can cope if/when the pump fails in future. My understanding (not a pumper) is that most pumpers keep back up basal/bolus supplies on hand in case of pump failure, not much point in having those back up supplies if you don't know how to use them.

Though I was initially horrified by @Kat Oman-G 's opening post, it actually makes sense now. Why they didn't explain it like that is the question?

Sell it as a new T1 skill that your daughter needs to acquire, so that she has back up if he pump breaks over a weekend and she can't get a new one for a few days. Or maybe she might want to go travelling in the future, definitely worth having the back up of MDI supplies if things go amiss when overseas....

Of course, we could go all conspiracy theory and say that the hospital are anticipating pump supply issues in the future, but I honestly think this is just good diabetic preparedness. Likewise people with cgms should probably be made to rely on an old fashioned glucometer for a weeks or so so they can manage without the cgm.
 
Jaylee said:
Hi, welcome to the forum.

How were you notified of this change in treatment. & by who...?
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Hi! The Diabetes nurses asked us to take our daughter in for an educational session...without us! She came out of the session with the injection pens and instructions to turn her pod off this evening and transfer to the pens. Not happy this happened without us there with her. She wasn’t 100% certain of some of the things she was told and got herself upset that she couldn’t remember everything. Feeling a bit shocked by it all if I’m honest.
 

Not handled in the best way, but I think they are trying to foster her diabetic independence. A 12 year old should be doing all her own carb counting etc... (When I was 12 I didn't have a glucometer, so all I had to do was inject, carb count a and do urine tests, but am pretty sure that I was doing those on my own.)
 
Agree it would be to help re-enforce a back up for if her pump fails, Anyone using a pump needs to know how to manage with pen injections and we need to make sure we have back up supplies of insulin for pens in the fridge, they could have communicated this better, but she should be independent with her control and able to manage without parent input unless she is struggling or unable to manage her pump herself. Have a chat with her team and ask them about what she should be able to achieve - it’s only a month but hope it helps with her understanding and you get some more info from her team about it.
 
But please tell me that she had some written instructions to go with all that?
 


When is the (is there a.) next appointment scheduled regarding this temporary change of regime..?
 
She'll pick it up in no time I have used pens since I was diagnosed when I was 14 and I'm 31 now. You love and learn!
 
I agree with all that have said it will be to teach being able to deal with the back up system ( pens and MDI ) in case of a pump failure ... the manner in which they carried it out sounds absolutely shocking though -- i always thought paediatric departments were much kinder than that and inclusive of the parents in all appointments
 
Thanks for all your reassuring messages. We’re going to meet with the team again. I guess the timing isn’t ideal and the biggest concern for her is school and nowhere private to give her injections. They’re all in ‘bubbles’ and movement around the school is limited. Even with the pump, she’s very self conscious. She ended up being HI all evening and into the night following the transfer to pens. Hospital suggested putting her back on the pod and minimise basal, which we did. Happy to work with the team, just want to be prepared. Thanks again all. K
 
EllieM said:
But please tell me that she had some written instructions to go with all that?
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Thankfully yes, but some things were said that weren’t written down. We should have been there with her but we’ll get that sorted once we have our meeting with them. Thank you for reassuring message. K
 

I've been IDD since 1971, I was 13 and was left to my own devices by my parents at that time. Your daughter does need to understand how to cope if her pump fails/stops with pens, really hope your meeting with them will help her confidence. With regard to privacy for injecting, in all my years I've never looked for a private place, always done mine in public, not sure hardly anyone ever noticed.
 
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