What are the issues I should look for with a pump

Type 1 and LADA Parents of Children with Type 1 Diabetes
1

My son was diagnosed with T1 almost five weeks ago. His BG levels were VERY high..his A1C was 13 now 11, he has been very dillignet with checking his levels and is getting quite good at deciding when/if he should back off a half point on insulin (i.e. take 6 units instead of 6.5 or move up to 7 if he has a baskeball game in two hours) I know we are SO new to this, but we are very much looking forward to getting the insulin pump. He can take up to six shots a day depending on what he eats and his levels. He is starting to just go hungry rather than take another shot!

My queston/concern is..WHAT ARE THE PROBLEMS/DRAWBACKS to look for when using a pump? I know it can't possible be the end-all-be-all answer. Any pointers or advice from those of you who have been doing the pump thing for awhile?

Thanks so much!

2

My son was just diagnosed 5 weeks ago as well. We just took the pump class. It looks like the drawbacks to the pump are that there's a chance of kinking and the sugars going really high - especially in the night. Another drawback is that it is worn on you. You can take it off, but if you swim alot, they discourage. They worry that you may also forget to give yourself a dose when eating, etc or you will forget to put the pump back on, etc.

My son had high sugars in the beginning as well. He caught a few viruses and had strep the first month. We are finally sickness free and his sugars are under better control. He runs pretty normal all day. Another thing I learned was that you can split the Lantus dose in two. Apparently the Lantus is only really effective for 15 hours instead of 24. If you give half the dose at 7pm and the other at 7am, it works much better with coverage. How old is your son? Hormones can play a part in the high sugars as well. My son is 10... How much is your son on? My son is on Novalog ( 1 unit for every 60 carbs) for his fast acting and 4 units of Lantus for the long term one. I'm new to this to, but I am of a medical background, so I have caught on pretty quickly to this. Please let me know if you need anything. Also, my son is in the honeymoon period still. That helps :)

-C

3

Hi Kellie, my son Santi is 3 yrs old, diagnosed T1 when he was 18 months. He was in shots for less than a month. Pump therapy is the way to have a better life living with T1 diabetes. Try hard to get OmniPod is the best in the market. I'm not saying it will be easy to get used to it, but easier than others pumps for sure.

After reading the blogs at this site, you'll probably get to the same conclusion we did-- getting my son into pump therapy. Read the book 'think like a pancreas' and also 'pumping isuling by John Walsh' I still read them once in a while, so I can compare notes with Santi's doctor.

Drawbacks: getting used to the menus, and general process of changing the sites where you choose having the pump.

Advantages: Many. You get the power to think like a pancreas.... read that book, makes it so much easier to face this condition... I'm not an expert, but many of my questions and doubts where clarified with these books together with a good Doctor...

God bless & best of luck

4

Drawbacks include having to have the device attached to you, using only fast acting insulin means you need to be more diligent about bg checks bc if something goes awry (like a kink) blood sugar levels can get out of control quickly without a background insulin working, and adding a device means things can be more complicated and there are more things that can go wrong with it. Injections are easy - not too much to carry or forget and you, for the most part, know you go the insulin in you.

All that said, I thinks the pros far outweigh the cons. I remember one of the first things I noticed when Caleb started pumping was that we could correct those highs and see them move right away. I remember a lot of waiting with injections - waiting to see if the NPH will bring him down. I'm an impatient person. Waiting was not fun for me.

If I think of other drawbacks I'll let you know. I'm sure others will chime in.

All the best.

5

Just a quick comment. My son is on the OmniPod pump and swims 4 days a week without issue.

6

Caleb too! Swims daily during the summer - no trouble at all and no insulin disruption.

7

I am a firm believer that pumps are wonderful but they are a very personal decision for your family. My son was on MDI for 6 years before we checked out the pump. We were happy on MDI and he was in good control. I was always uncomfortable, and still, am with the 'you must pump' attitude I felt some folks had. We did MDI while it worked for us and investigated pumps when we wanted a change - a very personal decision.

The reason we decided to look at pumps was that as he got older, we wanted him to be able to be more independent when he wanted to be (he was 7 at the time and had no interest in giving himself shots). He was adamant that he would only look at OmniPod because he did not want to deal with tubing and a device hanging on his belt. Not exactly sure why since he will talk your ear off if you ask him about Type 1, but since he felt strongly, we honored his wishes.

For us, the major pros and cons are...

Con: he has a device attached to him all the time, if the site fails he can go high quite quickly, some sites do not last the full 3 days, in a few 'careless' moments he has caught the pod on something and ripped it off (three times in two years)

Pro: FLEXIBILITY (we no longer have to eat on schedule if we do not want to), he can drive the whole process himself, he swims with his pod for 1.5 hours 4 days a week with no issues, we can lower the basal in the moment if he is tending low (something we could not do with Lantus since once it was on board it was working most of the day), he can be with a much wider variety of people who can help him manage his care (I did almost all shots), FLEXIBILITY!

I would say, if your son wants it and you want it, investigate the options. Pumping can be a good way to go if it fits your family's needs.

8

My 16 year old son went on the Omnipod this summer. He is a very active hockey player.

Cons: His #1 con would be the skin irritiation of wearing the pod in one spot for 3 days and occlusions (where the canula that dispenses the insulin becomes clogged) and the embarrassing occlusion alarm (sort of like a smoke alarm sound) during class. We have just added some barrier wipe and adhesive desolver to our regime which has helped with the sin problems. All pumps occlude occasionally and when they do, they make unwanted beeps and other noises.

My #1 con would be the higher cost of insulin,the pods and the wrap he wears when playing hockey. Another con would be the around the clock testing to get the pump basals setup correctly. (We did this in the summer thinking that we would have more time to devote to it but his activity level was so different when school started that we had major adjustments to make).

Pros: His #1 Pro would be that he can EAT! He doesn't have to plan and only eat what he planned to eat which is what we did in the beginning. He can eat more, have seconds and just mentally keep up with the carbs. He can eat snacks after school and treats at school without having to go to the nurse's office to do a shot. He usually just declined and was feeling very deprived. Teenage boys are hungry all of the time when they grow, so the pump is great. We buy individual snacks with carb counts on the bag or container so he can just key in the carb count and the pump calculates his insulin needs for the food.

My #1 Pro is the "Temporary Basal" that can be set before he plays hockey or any other exercise and then set again for overnight if he has had a night game where he might go low in the middle of the night. This has really helped with a lot of his extreme exercise lows which are really scary. Before, he was constantly having to eat to keep himself up for games. He tends to drop up to 100 points 6 hours after a hockey game so we temp his basal to let him rise some before the low hits.

9

Hi Kellie,

Welcome to the family no one wants to join. Our son was diagnosed Feb of 2010 at 12 years old. His A1C was 14. It sounds like you all are doing a great job. I am so glad you are reaching out, in the beginning it is so overwhelming and emotional. I would have lost my mind in the beginning if it wasn't for the online support I found.

Pumping is a personal decision. We started pumping in June after diagnosis in Feb. Our son was very diligent about testing. carb counting and doing his shots as well. He wanted the pump as soon as possible. I was very nervous about it. I knew DKA could happen quickly with a pump and I was scared. After learning more and finding out that diligent testing was the best way to prevent that and knowing how responsible Tanner was, we supported his choice. I think in the beginning it was really important for Tanner to feel like he had some choices. He felt like his life had been taken out of his control when he was diagnosed. I think the pump has helped him immensely. We haven't had any compliance issues so far and I think a lot of that is because his routine at school and with sports hasn't had to change pumping. He had a lot of low issues when on Lantus and since pumping he seldom goes low.

The biggest problems/drawbacks I think others have covered pretty well. It can be a difficult decision deciding which pump to pick. It depends on lifestyle and comfort level. Tanner is very active and strongly disliked the idea of the Omnipod and the size of the pod. He wasn't willing to have something that large attached to him. We chose the Minimed Revel with the integrated continuous glucose monitor. We love it and it fits our lifestyle well.

Tanner did a clinical trial when he was newly diagnosed at UCSF. It was a difficult rigorous trial that he chose to participate in. The results have been amazing and he is doing well. His A1C is 5.1 at 9 months since diagnosis. The trial must be done within the first 100 days of diagnosis and the minimum age requirement is 12. If you would like more info feel free to message me. aprildurham5@gmail.com

Good luck whatever you decide regarding pumping and feel free to ask any questions- we are all here to support one another. I found tudiabetes, children with diabetes and facebook to be a huge help for me. There are several amazing blogs as well. Message me anytime.

10

Both of our son's are on the OmniPod as well, and would never use any other pump. It's by no means perfect, but the lack of tubing eliminates the kinking problem. They both swim without any trouble too. Yes, things can go south fairly quickly if the pump isn't working properly, but your son is old enough to recognize highs/lows. The freedom that the pump gives them is tremendous, it has been, overall, a good experience!

11

The main drawback when first starting with the pump, was the site changes. Or I should say that was what worried us the most, initially. We used EMLA cream to numb the area at first and within a month or so, site changes were routine. There seems to be a lot of adjustments with the pump (she has five different basal settings throughout the day and the evening and overnight one changes quite a bit). And, I wish the pump were smaller. If, for some reason, she has an interruption in insulin absorption (bubbles in tubing or accidentally disconnects), her blood sugar will rise rapidly in a very short period of time. Other than that no drawbacks. I cannot imagine handling diabetes on MDI anymore.

12

So, do your sons have weight on their belly? I was told at the pump class that if your kid is thin, the omnipod falls off alot. Love to hear your input and experience.

13

Love to hear more about this study and the premise. 5.1 is amazing!! Please tell all- love to know.

14

My son also did a clinical trial in Dallas, Texas. There are several trials going on that attempt to stop the attack on the surviving islet cells which normally die out over a year or so after diagnosis. This keeps your son in the "honeymoon phase" where he makes at least part of his own insulin. In a study of long time diabetics that did not have as many of the severe side effects, this insulin, even though it must be supplemented, seemed to be protective and at least as important as keeping BG in a normal range.

We did the Protege Trial because there was more of a chance of his getting the drug vs. the placebo. We know that he received the drug because he had a reaction to the drug. This trial is not open but a similar Confirmatory Phase Three Trial called Defend 2 by Tolerx was announced in June and may still be open.

As April said, in most of these trials the initial drug dose must be administered by the first 100 days but the enrollment and pre-testing can take several weeks prior to that. Also, some trials do not want the complication of the flu shot. My son was diagnosed a few weeks after his flu shot (which seemed to put his immune system over the edge) so we had to wait 6 weeks before entering the trial.

15

I agree - those particular issues aren't issues on the Omnipod (not that there aren't issues) because there is no tube to get kinked, and you never have to take it off.

16

My son is quite thin and has had no issue. Having said that, the belly is not a site we use (he won't do shots there either). We use upper thighs, lower hip/top of the tush, and backs of the arms.

When he swims, the tush and the thigh areas are covered by his jammers and when he has it on his arm, we slip a terry wrist band up over the pod. We have found that covering it reduces the drag in the water. Sometimes if it is loose at all, the drag will cause it to get really loose or come off. So, simple solutions :-)

17

I hear a lot about people hearing things like this in pump classes, and I don't know where it comes from. My son is thin, and wears his omnipods on his arms. He has had probably 4 - 5 fall off in 1.5 years of using them. I'm sure with how active he is he would have had at least that many, if not more, yanked out by the tubing. The adhesive of the pod is amazing for us at least. He doesn't react to it, and we have to use a solvent wipe to get it off after 2-3 days. I know that's not the case for everyone, but it is for us. He also forgets which arm it's on usually - and when he's really sweaty or going to be playing hard for a long time we just cover the pod with a Coban wrap, which is a stretchy tape that sticks only to itself, and that really helps.

18

That's cool. I didn't know they let you do the omnipod anywhere else. I will have to look into that. My son won't let us do the shots anywhere but the arms or thighs. He is very hesitant to get the pump because he doesn't want something attached to him all the time, especially on the stomach. Thanks for the info.

19

Thanks. I was really hesitant to get the omnipod and now I feel like it is a possibility. I can't get my son to agree to the pump:( , so they won't even do it right now anyway. I wish I could find a local pump user so he could see it in action. Anyone live near Ashburn, VA?

20

So sorry to hear of your diagnosis. It's such a hard disease to get "used to," and things change so much - I have found online support key to what I know and I how I cope, so I'm glad to see you here!

So I agree with what many people have already said here about the benefits and drawbacks of using a pump. I think with a growing boy, the option of eating more, or snacking more is a key benefit of using a pump. We went to a picnic right after starting the pump and my son was so excited to just get to think about dessert AFTER eating his main meal - instead of trying to get everything counted and figured out before he got to eat anything.

He didn't want to pump for his first year after diagnosis, but there is no way he would go back to not pumping now. There is also no way he would go to a tubed pump. I'm pretty sure he'd still choose MDI over a tubed pump (although as a parent I'd still rather have any pump) I didn't push him, because I wanted him to be the one who decided, but every time he would complain about me having to give him extra shots for more food, I would point out that if he had a pump we would be pushing a button instead of giving a shot. I made it clear that I didn't care which way we did it, but if it bothered him that much then maybe we should at least try the pump to see if he liked it.

I think in making your choice you need to include him at whatever level you are comfortable including him. I don't see how old he is, but it looks like he's old enough to help decide if he's figuring out his insulin doses already.

Some thoughts on the systems I think are the most popular (and somewhat based on what I knew when we were making the decision a year and a half ago):

The animas has the smallest dosage available, which in the early stages and with younger kids, is definitely a pro.

Another issue is how long the pump assumes the insulin is in your system when you use it to help calculate dosages. The omnipod gets praise and criticism because it does it differently. Basically, if you bolus for your food, and then eat an hour later, the omnipod won't subtract the insulin you just took from the next dose. Other pumps at least let you know how much insulin is "on board" so you don't take too much. The omnipod assumes that if you have insulin on board, then you probably have food on board that will take care of the insulin. In reality somewhere in between is what we need, but there isn't a perfect way of calculating it.

Lastly, the minimed has it's own continual glucose monitor which "talks" to the pump to help manage everything together. If you go to their website you can see how it works. Unfortunately the people I know who have tried it don't like it. It has a larger insertion needle than other CGMs, only lasts 3 days (I think) so that you change it with the pump site, and it's not as accurate as the other cgms on the market. I do know a couple of people who like it, but most people I know don't use it even if they have it. The Omnipod and Animas both are supposed to be working with Dexcom to coordinate the CGM with them - but I would strongly encourage you not to choose a pump based on "upcoming developments." They usually are much farther away than they say they are, and they can even be totally gone if the FDA decides not to approve them, or if funding or agreements change.