For those not pumping, why not?!

Hi folks, I will be at a D conference this week speaking on the topic of "The Pump - Is it for Everyone"?

I have my ideas on this subject, which have been shaped by our experience and by what I've learned on this board and elsewhere on-line. But I'd like to invite any of you on MDI to chime in on why your child isn't pumping? :cwdi:

 

My daughter did not pump for the first few years after diagnoses and only started recently after visiting diabetes camp where she saw others pump. It did seem like she was most motivated by how cool it was.

Before she choose to pump I did not push a pump because we had great A1Cs, and liked the freedom not being tethered to a device that she would have to carry around the vast majority of the time. On MDI there were times when she could run free with nothing attached and be just like those without diabetes in that regard.

Now that she pumps I look back and I like the reliability of a needle - you give a poke and it works just about every time. Today there is often a doubt about whether or not we have a site that has gone bad and if the corrections that have been given are going to work or fail. An advantage of a pump is that we can give multiple corrections and the pump calculates the IOB (though not correctly and as far as I know there is no way to tell the pump to use a different formula). It is easier to give split doses, and we can have different basals for different times of the day. The pump also does most of the math.

My son on the other hand knew right away - as soon as he saw his sister get a pump - that he wanted one. He is still waiting but he does not like needles so every single time he gives himself an injection I can see the reluctance as he gives it. He also forgets to give lantus some mornings. He will really like less needle pricks. On the other hand as a serious athlete there will be more times when he will be disconnected for hours at a time and that will bring its own challenges.

We are lucky that insurance covers all our costs but for a time another diabetic lived with us and being on Public Aid she used vials and syringes often because it cost far less. There were times when she could not even get pump supplies.

 

we did pump for 4 1/2 years, but on july 4th Ashleigh had enough. 6AM she angrily hands me the pumps, says she's sick of the stupid thing and going back on shots. That was almost 5 months ago. I thought for sure she'd want to go back on the pump after a couple days or weeks of MDI. I did ask her at her last endocrinologist appointment in October if she considered going back on the pump, but she said the only thing she wants attached to her is her CGM. The Endocrinologist said her A1C looked good on MDI (6.5%), which that was actually what it was back in July when she was pumping. So it stayed the same.

 

Tag on to this. I did MDI for years and years, teen when diagnosed, then started pumping. For me I absolutely need some of the unique features a pump gives me even with a CGMS. But...I can see for many if you are OK using a CGMS that would make MDI very doable and so much easier. Sadly my insurance company is now making getting a CGMS much much more difficult.

 

My mom has had T1D for 48 years. She has always said she does not want to wear her diabetes. She does not want have anything attached to her. I think a cgms would benefit her greatly but I completely respect her decision. She has zero complications, a lifetime of fantastic A1Cs and is in much better health than most non diabetics her age.

 

Your Mom is doing great. Sure she works hard at her care and maybe had some great advice. I have had T1 for 45 years, never had good A1Cs till I was on a pump, despite a very very controlled diet and exercise lifestyle for years and years. I gained
even better control after going on CGMS. Just shows you how much your diabetes may vary. I too have good health but there is much that is not seen. ali

 

Nothing attached to you 24/7 only the CGM
Basal insulin always there
Not thinkinking if High pump failure, sight failure etc
More space for the CGM

 

My daughter (14) has no intention of pumping. She's very happy and well controlled on MDI. She does not want a constant reminder attached to her. She feels far more "normal" without being tethered to something. She doesn't mind injections. We like that there is basal working 24-7 apart from just rapid insulin. I feel that if she starts out with a very good, solid understanding of how insulins work and how to manage on MDI, she will always have that foundation and understanding to look after herself. We already calculate for IOB, do different things for longer acting carbs etc. on MDI. It might be a few more minutes in calculations per day, but worth it for her happiness and freedom.

 

We made the decision to start pumping just 3 months after diagnosis. I guess our reason for waiting even that short time was because my son was afraid of change, he hated injecting, he wouldn't have additional snacks if it meant injecting for them....I see time after time on the various groups that I'm a member of so many kids and young people not trying pumps despite not liking injections just because they are afraid of the change...for this reason I strongly believe that the option to pump should be offered at diagnosis, at the same point that they are afraid of injecting themselves.....i wonder if we gave them the choice at that point how many more kids would choose a pump over injecting. My son wasn't sure he wanted one, I had to do the sales pitch and he was sold within 24 hours of trying. I went in with the attitude if doesn't work for us then we'll go back to mdi but unless we try we'll never know.

 

How appropriate - my daughter is ready to give up her pump for awhile. She's going back to MDI when school breaks for winter.

She's had a rash of painful sites recently. My guess is that is what is prompting this. She does not like putting infusion sites on - she has to brace herself every time. Whenever she does a correction by syringe, she remembers how "painless" those little needles are.

I don't know whether she will get tired of injecting with every bite she eats and every time she needs to correct for whatever reason. Obviously that was the most noticeable benefit of pumping for her.

It will be different this time because of the Dexcom. Last time she was on MDI, she didn't have a cgm. She has no desire to give up her Dexcom

 

We just started pumping and were diagnosed 2 years ago. I think I was scared of the change and MDI was working well for us. Ds started mentioning last year that he wanted a pump, but I was still hesitant. His A1C in May and July was 7.8, and October was 7.2. He is 12 years old. We had been fighting some highs before going on the pump (had insurance issues and took over 2 months to get approved by both insurances), after just a day of going on the pump, we started seeing so many better numbers. I honestly didn't think he would like having something attached to him 24 hours a day, but I think he likes the flexibility of eating as well, although we don't let him snack whenever he feels like it. His average numbers are great and I think we have his basal adjusted pretty well so far. I like not having to remember to ask him if he has his insulin with him or remembering to stick it in his lunch box. Of course, you have to remember to have back ups of everything in his kits (like when we forgot his prep pads and had to run home). Then there are the pulled sites or bad sites, which we have had a few of since pumping for almost 2 weeks.

One of the D boys in the high school went back on MDI because it was interfering with his wrestling and drum playing for band. Another D that was diagnosed shortly after my ds (we went to pre pump class together as welL), and she wants nothing to do with a pump. I spoke with her dad last week and they have been dealing with highs. I have thought about calling her mom and telling her how well we are doing, but I don't want it to sound like I am bragging.

My dad has been a diabetic since he was 11 and he is now 59 years old. He has always injected. He has trouble with electronics going dead on him, including his pager for the fire company, so I am not sure a pump would even work well for him. He doesn't always eat right, but is pretty active, despite having bad knees. He is the only one in our family that doesn't wear glasses full time. He is very fortunate that he doesn't have more complications. Another friend, who is the same age as my dad recently went back to shots, although I think it was more due to the price of pumping. He has had trouble with dropping fast and being unconscious.

Of course, there are pros and cons to both. We are fortunate that we don't have to pay anything OOP for anything, if we did, that might also be a factor.

 

My dd pumped for 5 yrs but doesn't want to anymore. She doesn't like wearing a device (though she does have a cgm now). She's always been the sort to be picky about the feel of her clothes etc. her numbers have been better post pumping but I think that's more about not being a toddler. At her last appt the endo said her a1c is one of the 5 best among their patients which I have s hard time believing as I didn't think it was that good (and its a big clinic).

 

I got my began pumping with my T:slim G4, my first pump on November 2, after 50 years of the vial and syringe. In June while I was injecting my evening Lantus I began to cry. I was sick of the injections, just sick of them. I have a fear of needles and since my Endo had been after me to get on the pump, I figured now was the time. I started researching and when I went to see her in September I knew which two pumps I wanted. She agreed with the T:slim not the other one.

My Endo thought I had too many lows, that's why she wanted me on the pump. My problem right now is I've had a lot of bad sites. I had abdominal surgery last year and stretch marks so finding spots is tricky. I tried my leg and both sites were bad. So that is my biggest issue.

I like not having to carry anything other than my G4 with me. I like having both the pump and CGM in one machine. Sure, it's not the latest technology but that is fine with me.

 

We were not pumping in the 1st year post diagnosis. That's because our clinic doesn't approve the paper work for government funded pumps until at least a year post diagnosis. This initially angered me, given we were really struggling with dosing, but in retrospect, I think the clinic's policy is good. While that first year was the biggest D struggle we have seen so far, what we learned in that first year about basal, bolus, insulin duration, IOB, etc, and all the calculations that we had to do manually, really helped us when it came time to manage via a pump.

 

Site changes.

First time we tried pumping, DD was 4. She was so traumatized at training that we didn't even get that first site in.
Second time, she was okay for awhile but the site changes eventually bothered her. She decided to quit pumping and go back to MDI.
Third time, site changes became pretty horrible for all of us. She decided to quit pumping and go back to MDI.

She's typically pretty happy with MDI. Insulin syringes don't bother her at all and she'd rather do 10 shots a day than a site change every three days.

I don't really care what the kids do as long as they get insulin, so I don't push one method or another. Pumping is more maintenance and gear but MDI takes a little more time. Both have their advantages and disadvantages.

 

Thanks everyone for your thoughts.

We've always felt that there are few choices when you have Type 1 diabetes, but you do have a choice regarding pump vs. MDI. Our daughter has never wanted a pump, and we have respected that choice.

The one thing that bugs me is that in Hamilton, Ontario where we live, the families of children with Type 1 D get much better training in diabetes management than the families on MDI. This is wrong-headed and short-sighted - everyone should get the best possible training! :cwds:

 

I wanted to share this article: http://care.diabetesjournals.org/content/31/Supplement_2/S140.full Interesting in part because people who were able to stay in the upper 6's and lower with MDI did worse with pump, or at least not better (as a large generalized group), while those who could not stay under 7.0 on MDI did better with the pump, though it could have been in part due to higher hypo rates on MDI or that MDI patients structured their eating habits more consistently while those on pumps ate a little more freely, or it could really be any number of factors.

My son does not mind shots at all. I think it is because he felt so much better when he started getting them.
I also do a lot to control things with structured meals, and I think we will have to pump eventually because I can really only structure meals so much until about high school at the longest, so I have maybe 4 1/2 years until I won't think its appropriate for me to tell my kids what to eat and when to eat it all of the time. I will want to transition well before that time. Again my son has no problem with shots and he is afraid a little of the pump at this point. I am afraid to have uncovered periods, though someone around here mentioned that she covers about 60% of basal for her child with Lantus and then varies the margin with the pump. Basically then, if you don't learn the advantages of a pump it probably doesn't do any good (which may explain the study I posted in part).

I want my son to also have the ability to go to the BP hopefully before high school, and to eventually not have to calculate for what he eats. I still believe that teaching kids good eating habits should be strongly enforced though. So again, I want to transition to the pump.

So basically 3 reasons I want to switch: 1) the right basal seems to be critical, and not always the "same" 2) I can't tell him how to eat beyond a certain age and 3) It is a gateway to the BP. i suppose also variable bolus patterns and smaller dosing increments might be nice too.

I don't want to switch because things have gone smoothly moving up from 4 to 14 units over the last 4 month with averages staying constant. Also don't like the prospect of uncovered periods/bad sites.

 

I don't want to keep harping on this, but I believe that in articles like the one you've quoted there is no consideration given to the additional time spent training people about Type 1 D management techniques when they go on the pump - training which people on MDI seldom if ever get.

I think a significant portion of the difference in outcomes is simply due to the better training received by the Type 1 families who are pumping.

 

I would agree with this wholeheartedly. Our clinic is very keen to get my daughter on a pump and provide training. They ask every time we go. We've learned by discovery and from information here and in reference books about different tricks of the trade to manage diabetes on MDI.

 

I would agree. At my son's clinic his endo and NP both said that as policy they don't suggest split lantus, split bolus, regular insulin. Their policy with MDI is to develop a plan that involves 3 injections of rapid acting and 1 of basal plus corrections. I'd rather dose properly for the meal than have to do a correction. I asked about regular and they told me that it is not an option. (I know I can get it myself). Some endo's I have talked to on-call there have said to bolus for snacks, but their official policy with kids is 3 meal time boluses and uncovered snacks-correct at the next meal (which is near impossible because you may not even see the full effect by the next meal). They are not happy with 5.9-6.0 because they are scared of hypos, but we have 0% under 60 on dexcom, 1% under 70. They keep telling me that 7.0-7.5 is good enough (which it may be in the long run), but the problem is that if I dose differently now I have to do corrections and to me that seems less safe because I have gotten the least predictability from correction boluses.

The NP said that they never officially recommend more than 4 injections plus corrections for kids. They have a big pumping class once a month I think. Note though that the article shows that MDI users who are under 7.0 don't do any better, and often do worse on the pump. I think a lot of people just skip injections on their kids. Also some of the lesser results on MDI may be with a sliding scale where you only dose to the meal time blood sugar and eat a meal that is +/- 15 grams. Basically if you are at 70 for a meal, you don't bolus at all, you eat and fix it next time. If you are 70-110 you take x insulin, 110-130 you add some (I think that the ranges are bigger for kids). They wanted me to use the sliding scale first. In fact they typically don't teach parents carb counting until they use the sliding scale for 6 weeks.

However, the at my son's clinic they don't push the pump either. They never asked me if we want to start pumping.