Hating her pump

So our 7 year old daughter Sarah has had a pump for 2 months now and all of a sudden it's become a huge issue for her and she says she wants to go back to needles... AUGGG! She only had diabetes for a year before we switched to the pump at the end of January. We made the switch as we thought it would be so much better food wise, as it would give her the freedom to eat what she wanted, when she wanted. I think she is enjoying that part, but she is really hating having to wear it all the time, especially when she just wants to play.

Has anyone who is also pumping experienced this? Is this just something that will pass, or should we seriously consider switching her back to needles? She's still so young I'm not sure she really knows her own mind.

I also cringe a bit when I hear "the freedom to eat what she wants when she wants". A pump doesn't guarantee the ability to cover high carb/high fat meals, nor does it prevent increase of insulin doses leading to weight gain and development of insulin resistance.

My only take on this is to ask her to write down the pluses and minuses of each protocol and then have a further discussion about it. What did she hate about MDI? What did she like? Do the the same for the pump.

You could independently write down what your pluses and minuses are as well. Then swap lists and see where you have common points and disagreements. This might give you a somewhat more rational approach to solving what might be an emotional decision. It will definitely help frame the discussion.

Zoe, I hear you, but I also know when I was on MDI, I felt extremely tied to a schedule of eating @ 7, 12, 6, snack @ 9, repeat, repeat, repeat ...

The pump has been liberating in that regard.

Not to mention that I was also a little scared of pushing my physical activity due to having taken a basal insulin hours before that was based on my "normal" activity. Again, the temporary basal rates have been a tremendous boon to doing almost anything, anytime.

Yay for this advice Mike!! We are talking about a 7 year old for g'ness sake. Her number one job right now is to be a kid, the diabetes makes that hard enough - just in case all the adult dx'd D's don't know that. When I was seven I wanted to play, too!! I really like this suggestion to do the + and - if Sarah is articulate enough to say why she does not want the pump then I suppose she can help decide if it's a proper choice.

I think it is a beautiful thing that you are asking about Sarah, Leelaa and recognizing that "she's still so young I'm not sure she really knows her own mind" - that is so true. You have to be the decision maker in this - a 7 year old needs your guidance. Including her in the decision is one way to allow her to own her condition. Go for it!!

i think this is great advice mike! as others have said, she needs to be a kid and play and rough house and be active and even though she is young, to be part of the decision making process. would it be a problem insurance wise to let her go off it and then, in the future, start on it again if she decided that the pump was better?
i feel for you leela, i cant imagine being a parent to a t1 kid, as i was diagnosed t1 later in life. good luck with trying to find a solution with your daughter!

As a person who was dxd at age 8 and got a pump at age 10, here are my thoughts:
If your daughter really wants to go back to MDI, let her do that. It is her childhood, and if she felt better off with MDI, then she should be allowed to change.
However, i would not change instantly. Has she been talking about this for long?
I would wait for at least another month, if she still complains about it then, i would sit together with endo and work it out. Maybe a trial of 1 month on MDI will give her more ideas what she wants. we all know the mind of a 7 year old changes quickly. One week they want to become a nurse, the other week a princess.
Give yourself the time you need and make the decision together! It does not only concern her life, but also yours, as a caregiver.
I personally have loved the pump since getting it over 8 years ago, but i have also tried out different stuff, went back to MDI for 2 weeks in 2010, but then was absolutely fed up and went back to the pump.
Another question: how does she wear the pump? We have kids from age 6 upwards in D-camp ( guide a camp for diabetic kids every summer), and for the ones on a pump, it has never been a hindrance to anything. Maybe you can change something there, e.g. pump belt, clip, putting it in the pants, we also had one kid once who had something like this:

(but way smaller, it looked like a fanny pack and she put it into her underpants)

maybe something like this would also be a fun idea:

Ever considered a switch to OmniPod?
I hope I could give some inputs, of course i know that the insurance has to play along with some of the ideas above.
Good luck, and keep us updated!
SC

I dont think I would allow the change. MDI seems easier I know, but one loses more control. Here is what I would do, I would explain the pump is a big investment and it needs to be used. If it is a medtronic let her personalize it with stickers etc. I love the skins, I use them when I get tired of mine.

If she were to go on MDI be sure she checks more. I would raise the testing regiment to reflect the loss of control.

She likely wants to go off for two reasons.

1. others kids dont have them, I get that. it is tough to be 8 and different especially if boys are being noticed. Help her figure out ways to explain it remember she can blame wearing it on parents. (My mom and dad make me) as parents we have big shoulders and can carry that burden and

2. she likely felt MDI was easier. Likely because you had more of the burden, if she does go back to MDI, I would push some of that burden over to her. Hey there is a cost for everything and as humans we usually figure out the least costly path.

I do know a kid about her age who has been on and off four different pumps, because none suited him for one made up reason or another. He wants what he does not have and as a parent if I let her go back id be pretty stern about responsibility, she might find she likes her pump.

I think (but dont know) this is more about other kids than her. Not being different is a big big issue at 8 years old. I would also call a school counselor, principal, nurse or social worker. They may have some ways to help out.

I just never let my sons out of things very easy. I always tired to make sure there was a cost not in money but in other ways. I would do the same here. Just me of course

+1

It really depends on the individual. With long acting insulin, I haven't found physical activity a problem doing MDI, and I inject short acting insulin whenever I will need it, so I don't see how it ties me to a schedule any more than a pump does.

Omnipod might be a better option for a child. Maybe you can return the other pump within a grace period.

That being said, pumps may not be for everyone, and if she can maintain good control with MDI and she prefers MDI, then why not MDI? One possible advantage to a pump is being able to bolus in school while schools probably don't let 7 year olds inject on their own.

As for pumps providing better control, they have advantages and disadvantages and it really depends on the individual. Also, there is more gear involved, and by being on MDI, I can avoid that stuff. Personally, the big game changing tool for me has been a CGM (continuous glucose meter).

Thanks everyone so much for all your comments and suggestions. Your replies have been very helpful because I can see now there are a few factors coming into play. As Rick commented, it's probably very true she liked MDI because I was doing the bulk of the work and we were only testing 4 times a day. Now that she is pumping and using a the Medtronic, she is doing all of her bolusing herself - with adult supervision of course and we are doing more bg testing.

And swisschocolate, you also have a point because I just realized last night that since the weather has finally warmed up a bit here in Ontario, Sarah isn't wearing snow-pants anymore, and they were keeping her pump nice and snug tucked up to her when she was playing outdoors, and maybe now she's noticing her pump bouncing around more. She's been wearing her sleeping belts to carry her pump as she seems to like them best, but I should look into other options. We also need to be giving her those short breaks off her pump every day just so she feels 'free'... she always comments when it's off how she loves not being connected to it. Plus, as a 7 year old the pump probably does feel pretty heavy!

But I honestly don't think she really would like going back to MDI. She fought her injections everyday, and since we were still using carb targest for meals, it was so frustrating having to stop her from eating when she reached her limit, or trying to stuff more food into her when she was full... and then she was so sick of eating 'free food'. She also has three siblings and they would be hungry at non-scheduled snack times and so I would have to tell them to go eat their food in private... or she would say it was Ok for them to eat things in front of her. I hated it so much!! So I do know that I pushed for the pump more than she did, but I wanted her to have smores at a camp fire in the summer, or at a birthday party to be able to eat pizza AND cake. Maybe I pushed too much. She came out of her honeymoon just before we got the pump too, so the pump has actually been very helpful in keeping her bg more stable.

Could it be that now after having diabetes for only 15 months that she is just tired of having diabetes? She did mention that the other night as well. And perhaps the pump is too visible a sign for her that she has it and always will? But then I wonder if we'd be dealing with the same thing even on MDI. How do you get past those times when you've just had enough?

I might be "acting like a child" in this way, but I can understand how a tubed pump might make her feel like a sick person, or stand out. It's exactly how I felt when I wore a trial medtronic for a while. I don't feel that way with my omnipod. If that's the reason she doesn't like the pump (and it might be really hard coaxing reasoning out of a 7 year old), I'd look into a, admittedly expensive, switch.

MDI or Pump, the important thing is compliance. The method is just a means to an end. If she starts not using her pump because she doesn't like it... well, that's the important thing. :)

Sorry to hammer away at the food issue, and if it doesn't fit for a child, ignore it, but I'm confused as to the ways in which you compare MDI and pump food-wise. I have no idea what "carb limits" are, but you don't have to eat on a schedule with MDI. You use the I:C to bolus for the food whenever she eats it the same as you do with a pump. You can even use combo boluses with MDI the same as on a pump. The only difference I see is with a child that has varied appetite. I would never want to have to force food when I wasn't hungry, so I would tend to put less on the plate and bolus accordingly and then add insulin later, but yes, with MDI this would include a second injection. With a pump it is difficult to accurately bolus for things like pizza, cake and smores, the same as with MDI. I use a pump and I ate pasta last night. I over-bolused a bit and did a combo bolus because pasta peaks later. I still woke up at 249 this morning. Also with MDI you need to do just as much testing: before meals to determine I:C, after meals to see if you are high, at bedtime to make sure you are safe to sleep and in between if you feel "off".Most of us test a lot more than 4 times a day whether on MDI or pump. So some of the variables even out.

Everyone gave you excellent advise on decision making with a child her age, I just wanted to give input on some of the assumptions you are making about both types of treatment.

Very tough situation and I feel for you. Your daughter is certainly telling the truth that she is fed up with pumping. You should certainly listen to this! On the other hand, you are absolutely correct that MDI may not be in her best short term and long term interests. My big fear is that you daughter is so miserable pumping that it starts negatively impacting other impacts of her life (playing, socializing, eating, bolusing, etc.). Diabetes is tough and kids need should receive some extra help to try to let them live a "normal" life. If your daughter is "happy" and acting like a 7 year old only while on MDI, then I would change her in a heartbeat.

I think this is may be a psychological/social issue. I recommend speaking to your PCP/endo (physician that knows you well) about pumping and see what they say. I just think there are too many issues at play for pointed comments.

Zoe, I haven't been on MDI for well over a decade. How do you do a combo bolus?

Just by giving a second injection at a later point, like some before and then the rest an hour or two later. In a way it overlaps with "correction" but it's nice if you can cut it off before it goes high. Yep, it works much better (and much easier) with a pump!

Gracias!

So when Sarah was MDI - and this is probably just because she was 'new'... the dietitian sat down with us and we figured out how many carbs she would eat at each meal, and then the insulin she received was to cover those specific amounts of carbs, and the amounts only changed based on her bg levels (we had a sliding scale).

So for a year she followed this routine... 45 carbs at breakfast, 20 for morning snack, 50 for lunch, 25 for an afternoon snack and 55 for dinner. You can see how we found this really restrictive! As well she wasn't getting rapid for every meal, she was given some NPH in the morning to cover lunch, so we were also restricted by time... snack had to be two hours after breakfast and lunch 2 hours after that.

So we never progressed further from this system because she came out of her honeymoon and then we were pumping. So we have no experience with flexibility and MDI. From what you are saying, it's there, it would just be something new for us to learn.