The battle continues for the pump

My daughter has been a t2 since she was 6 years old, she's now 13. Imagine the shots and the finger prickin all these years. Now she's complaining and tired of it but the endo won't put her on the pump not right now. Wow what are they waiting for, it's frustrating she's on 6 shots a day and cheking 7 times a day. I suffer for her, but it has to be done for her own good. Does anyone have any suggestions.The results in the long run are the same as a type 1 diabetic. The medical proffecion should really worry about finding a cure instead of denying care.

Maybe try another endo ??? I heard about some endo’s that just don’t like to put kids on the pump…
Our doctor wanted us to wait 9 months before going on the pump, so we could really learn about diabetes…I think she was right. I believe you have more than enough experience to try it…
My daughter is 4 and has been on the pump for almost 3 years, it really made a difference. She’s much more stable and I totally recommend it. I change her site every 3 days (and use a numbing cream so she does not feel anything) and she haven’t got a shot for 3 years which is awsome in my opinion…
If you talk with parent of kids that are on the pump I believe most of them will recommend it, I go to JDRF meetings and they all agree that the pump changed their habits for good…
My daughter’s A1C was 8 before the pump, now it’s 6.8…numbers sometimes talk by themselves…
Hope you can find a dr that agrees to put her on the pump.

Why won’t she let you switch to the pump? does she have a valid reason for saying wait? our endo’s say it is totally a personal decision. they recomend waiting 6 months after dx, but you are well past that, and i know for a fact that they bend that rule in certain situations. both my girls do shots right now, and like you they get 6+ shots a day and up to 15 BG checks (on swim meet days etc.), but we will switch to the pump when they are ready. it is their decision, not someone elses, including the doctor. if it will help her feel in control and avoid major burn out then i think they should let you. we all do this so our kids can be normal and healthy. there is no faster way to cause burnout and frustration, then to tell them they can’t do something, and micromanage their lives.
would she be willing to try a CGM if she can’t do the pump? that might help eliminate some of the finger pricks, one of our daughters is starting a CGM next month.

Are her numbers good? If they are, that would be a good reason why your endo won’t switch her. If the endo doesn’t have a valid reason, or won’t give you her reason then you should probably try to find a new one. I hate it when they don’t give me reasons for important decisions.

You do realize that she’ll have to prick her finger a lot more on the pump, right? Doesn’t matter if she gets a CGMS or not, you still have to do a lot of testing. The CGMS gives you trends in blood sugar, not actual readings.

What is the reason her endo doesnt want to put her on the pump? Can you insist?

I know why your endo doesn’t want to put her on the pump, because I had this discussion with the coauthor of my book just last week when we were fine-tuning some of the info in it. In a nutshell, your daughter is on the edge of adolescence, and that tends to be a time when kids’ ability to comply with diabetes regimens gets worse. Pump users actually have a greater risk of DKA than people using MDI because if the pump should fail – whether it’s due to bubbles, crimped cannulas, or a dozen other reasons why the pump doesn’t deliver insulin – there’s no back-up insulin in the system, so ketones start within 2 hours, but you may not discover the problem for longer than that (this happened to me just last night, when I woke at 1:30 a.m. to find Eric at 435 with 1.2 ketones because of bubbles in his line). And when you combine a tendency toward poor compliance in teens with all the myriad mechanical reasons a pump might not deliver insulin, you could end up with a child who is either hospitalized or worse. The NP who explained this to me said that at the Maine Med clinic where she works, they frequently take adolescents like your daughter off the pump altogether, even if they’ve been pumping for years, if they see signs of poor compliance – an A1c of >8.2 plus episodes of ketones, or indications that the kid isn’t keeping logs (or is filling them in with false info) are red flags that they need to return to shots, and that the parent needs to supervise more closely. Their thinking is, if the kid has long-acting insulin on board because they’re required to use Lantus, at least it’s less likely that they’ll die from DKA even if their A1c remains high from poor compliance.

Plus, a pump may not actually make matters better for her and you. My 3-year-old son is on a pump and believe me, it’s not as simple and miraculous as the Medtronic literature makes it sound – don’t get me wrong, Eric’s pump has been a godsend in many ways, not least of which is that it enables his daycare provider to give him insulin, but there’s a lot to learn, and a lot to keep tabs on. I figured putting my son on a pump would solve my worries about his diabetes, and it solved many of them… but it created a bunch of new ones. (And, being on a pump is not going to mean your daughter will do less BG checking – I still check Eric anywhere from 7-10 times a day. It will only mean fewer shots and greater convenience in calculating and delivering her insulin. But that may be reason enough for her.)

I suggest you ask your endo if this is the reason for his hesitation. If it is, there’s a very simple solution: put her on a pump, but for the time being, set her basal rate at 0.0 and give her a shot of Lantus or Levemir each night to be her background insulin. That way, she has fewer injections to deal with, but even if she does have compliance problems, her likelihood of going into DKA decreases dramatically. Then you have some breathing room to see whether she’s going to do well giving herself bolus doses on the pump, and to work on her ability to be compliant before you take away the long-acting insulin injections and go full-fledged on the pump. It’s a very sensible solution to the problem, if that truly is the problem.

PS Monica may be right, if her numbers are good, that’s probably why your endo doesn’t want to switch her – and I hate to say it, but it’s probably because he knows that the insurance company will reject the claim for the pump if your daughter’s in good control on MDI. The long winded explanation I gave you above is exactly why both the doctors and the insurers take a “don’t fix if not broke” attitude toward switching, because if she’s doing well enough as is and her chances of DKA are going to go up by switching, then switching makes no economic or medical sense. They, obviously, do not take into account the personal and emotional factors that might matter to a patient or a parent. And I don’t know that they should. So… food for thought.

Hi Melissa. I found your suggestion of setting the basal rate at 0.0 and continuing with the Lantus interesting. My son is nowhere near ready for the pump. He is less then 2 months into diagnoses. But obviously we look at the possibility in the future. When my son was originally diagnosed and hospitalized, a young teenager next to us was in because of pump failure. She was terribly ill. It frightened me. Of course I had all sorts of questions, wanting to know how to prevent that from ever being my son. But I like the idea of using the pump, but being able to continue with Lantus at night. It would give him the freedom of the pump, but still give us the peace of mind when he sleeps. Is this something common that people do? If not and if its something that can be done, why wouldn’t they do it, if it continues them with the Lantus for nighttime? Our next appointment is less then a month away and I believe he will get switched to the pen. He is very excited about this next step.

You want the pump; your daughter wants the pump. Your endo obviously is not comfortable with pump therapy and probably would not be of much help to you once you got it. No reason to put your daughter through seven shots a day (and control is very difficult in the pubertal/early teen years, not becuase of noncompliance, but because of extreme changes in growth and other hormones where BS can shoot up 100 points an hour in the absense of food during growth). Erratically, quickly and unpredictably. A Lantus shot is not going to cut it, IMO. I don’t know how anyone deals with puberty without a pump. So much for puberty and teen years as being an excuse for denial of pump therapy. Vote with your feet and find an endo that will support you and your daughter in pump therapy. Pump therapy is the NORM in our area. Some endos make you wait a year to go on the pump, never more than that. High blood sugars should not used as an excuse to deny the pump. The pump is a delivery system; nothing more.Endo is denying her the one tool that would help manage high blood sugars quickly and effectively, corrections can be done at the push of a few buttons. Teen would be more likely to give a correction with the pump than by injection. Corrections are necessary during pubertal and teen years… regardless if basals are correct and have been very recently tested, regardless of whether food is bolused for. Their blood sugars can rise unpredictably If blood sugars are high, it will be much easier to give the correction and even give a temporary increased basal for a few hours on top of the correction, as that is sometimes necessary. In fact, it is often necessary. You cannot temporarly increase basals for a few hours only during the evenings while experiencing insulin resistance due to extreme growth hormones with a Lantus shot. I hope you will get a new endo (interview the endo first). I would get an endo who does not use excuses to deny the pump. I have nothing against using Lantus or Levimir as an aid to pump therapy if experiencing too many problems. You can give 50 to 80 percent of the basal through Lantus, still being able to make adjustments in her hourly rate via pump. But see no reason to jump to the untethered regimin (which is what this is called) off the bat. We have been through puberty, now in early teen years. A1c never over 6.7 and usually in the low to mid-sixes. Yes, she can still have high blood sugars that shoot up for no reason or even food related. But we can deal with them quickly via corrections and an increased temp basal on top of the corrections for the six hour period in the evening that this may occur.

I have changed her Endo, but still the same thing and I’m tired of fighting and arguing for a pump she takes insulin’s and that alone qualifies her for a pump. But I don’t what else to do for my child but roll with the punches.

Her numbers go up and down they dont stay at a level.

I’m thinking of moving out of Florida, because the care here is so bad. Her BS is high and lows I can’t understand how much experience does anyone need to get put on a pump. I think that 6 years is enough time.

Call up the pump companies (Minimed is very good at this, although you don’t have to get a Minimed pump) and ask them for a list of doctors in your area who recommend pump therapy in their practice (as a matter of course). You are looking for endos who have a pumping practice, i.e., they will steer most patients toward the pump. Before deciding on a new endo, prequalify them by explaining you want to immediately start pump therapy and are willing to train but with a three month waiting period only. Also, I believe a regular M.D. can write a script for a pump. There are diabetics who pump who don’t go to an endo, just see a regular MD who specializes in diabetes. I don’t understand the resistance on the part of the two endos you have seen. Pump therapy is the norm,. and is common place in our area of the country. Where are you located? The resistance on the part of the endos puzzles me. And, nope, don’t roll with the punches. Fight back! P.S. If there are children’s hospitals in your area, they may be able to point you toward a pediatric endo who specializes in pump therapy.

Excellent idea Jan. Like many others, we were initially told that we would have to wait at least 6 months. (I was asking for a pump while we were in the hospital.) However, one of the CDEs was impressed by how much D reading I did as soon as we got home, and we had a pump 6 weeks later. It makes me crazy that MDs deny their clients pumps for what seems to me to be personal reasons (the endo’s personal reasons, that is).

You might feel better about shots if you cooresponded with Gerri, an administer on this site. (Her picture is over to the left.) She has excellent control and uses MDI.

with the basal rate coming through the pump you can adjust it as needed, even within a 24 hour period. So if my son is not a good enough number before I go to bed (especially if he still has active insulin) I can temporarily cut back his basal rate for a couple of hours. We can also put a temporary increase on a long road trip. I have also heard of people usuing lantus for 1/2 of their basal and the pump for the other half, which gives them some flexibility and less chance of DKA. Like Elizabeth said, a pump is wonderful in many ways, but you definately need to be on the ball. I find myself waiting up to check his sugars far more now. Sometimes the site has actually been bad (one time he wasn’t even that high and I would normally have gone to bed with him at that number, but I had a gut feeling and sure enough he went up and up and i had to change the site. I don’t like to think what would have happened if I hadn’t waited up) and other times like tonight I wait up and the number is coming down so I know it isn’t the site, but I am still waiting up a bit longer to make sure he doesn’t come down too far (we have been chasing lows for the last few days and not wanting to stay up half the night catching lows, I didn’t bolus for some of his bedtime snacks, but I think I left too many carbs out of the bolus:)

also with seeing the problems that can come with the pump my husband (also type 1) doesn’t like it and I think he would like to go back to shots, (if he was an endo he probably woulnd’t put anyone on a pump either-lol) but I could not imagine going back to 6+ needles a day and we do overall have better control with the pump.

I did it for a short time when I was having frequent problems with site failures because my 3-yo son is so wiggly, I was constantly getting crimped sites and losing a lot of sleep. And then, of course, my ability to put a new site in was compromised because I was overtired and clumsy! So my endo had me dial down the basal rate and put him on Lantus for a little while, just so that I wouldn’t lie awake worrying about him going sky-high overnight. We still had the pump for his bolus doses, which was essential because he’s in daycare and his daycare provider can’t do shots, but the Lantus was there for night time. It worked well, but I don’t know how common a practice it is. The principal drawback to doing it that way is that you can’t adjust the basal rate if you do it that way, and adjusting the basal during the day is one of the biggest pluses of the pump, particularly if your son is athletic and wants to be able to do sports without worrying about going low from excess activity. What you might consider doing if you’re that worried about overnight ketones is see what your endo thinks about putting him on a form of long-acting insulin that lasts 12 hours instead of 24, and then set his basal rate at zero from 7 pm to 7 am (and make sure he has his injection of long-acting insulin right on time to take over when the pump’s basal shuts off). Then you could have the pump take over during the day when the injected insulin wears off. It’s worth talking to his endo about it anyway.

Hadn’t seen this before I wrote my other reply below – if she’s not in good control on MDI then definitely, she would be a good candidate for a pump. I would call Medtronic and ask them for advice on finding an endo who’ll work with you on getting her on pump therapy, in this case.

yeah, now that I’ve seen what you said about her blood sugars not being stable, I’m wholeheartedly in agreement with Jan too. It’s one thing for an endo to be hesitant about it with a kid whose BGs are stable, but quite another for them to refuse when her BGs have been unstable for this long. I would get your daughter’s full chart (your endocrinologist is required by law to give you copies of her medical records if you request them), call Medtronic for a recommendation, and take your daughter and her records to the nearest ped. endo. as soon as possible. If she’s already unstable, and she’s unhappy on MDI, she’s going to get worse, not better over time, so if you’ve got two different endos balking at making the switch, it’s time to find one who has his/her act together.

But, just as a word of caution, please don’t go into it thinking the pump is going to solve all your problems. There’s a learning curve. Get the book “Pumping Insulin” and read it before you start, so you know what you’re getting yourself into. MDI is easier, in many ways, than pumping, so don’t go into it unprepared!

Yes, but was her A1C good? They will look at her meter numbers but her A1C is what counts.

You said in another response that you already switched endos. Did you switch within the same practice? If so, you’re going to need to try a different group. Endos within the same practice will usually have the same ideas about diabetes management. And they’re less likely to reverse the decision of someone they work with directly anyway.

Did you find out why they don’t want your daughter pumping? You need to ask, maybe you can fix whatever problem they’re concerned about and change their minds.

I switched every thign completely, but still it didn’t really make a difference. Her A1C is 5.7. So maybe thats why. But still the 6 shots continue and that’s why I would like for her to be put on a pump to reduce the amount of shots given daily.