First week of pumping not going well

My soon to be three year old son just started on the Animas Ping this past Wednesday and it is not going well. We were trained by a clinical person from our Pediatric Endo (Non Animas Employee) and I believe she did a good job. After leaving our training we felt comfortable with operating the pump for our son. She did not really know many of the features on the remote because she does not work for Animus; however, it is easy to operate and my wife and I have figured out how to look up graphs and all kinds of cool extra stuff. I realize that it takes time to get used to everything when you start pumping but I am very concerned about his health. So far, in four days we are experiencing extreme highs and lows. Here is what is happening… He gets his bolus for the amount of carbs any time he eats a meal or snack and we end up testing him two hours later and he will be in the 300’s, one time even got over 400. We see this high reading so we bolus him (EZ BG) to correct him and he goes super low in a very short period of time. Earlier today he went from 360 to 32 in an hour. Since he is just one month shy of turning three years old he cannot tell us when he is dropping so we are checking him all the time. We have had two conversations with the lady that trained us about the ratios and I am sure that she will make a change on Monday but I am wondering if he is experiencing some kind of issue with absorbing the insulin and it is just kicking in late. Tonight he was 98 before bed so he had a small snack and we checked him in the middle of the night while he was sleeping and he was 310. We are terrified to correct this because we are afraid he will drop so fast. We never had problems with his control on injections and this is really stressing us out. On top of all this, while he was playing this afternoon he scratched the screen on his brand new pump so badly that it is barely readable. If anyone out there has any advice I would greatly appreciate it.

Thanks for your help,

Chance

So sorry to hear of these problems. Dropping that quickly feels horrible.

I’d also be worried about those extreme highs. If it were me, I’d disconnect the pump & go back to injections until you get some answers. No one should be experiencing 300-400’s.

I’ve never dealt with a child, but I’ve been a pumper for 12 years, and I do know a couple of things: 1) a three-year-old is so tiny that his insulin doses need to be really tiny as well, and a very small change can make a great difference. If you’re seeing extreme highs and lows, maybe his basal is off, and needs to be corrected by just a tiny bit, and very cautiously. Basals have to be right before you can deal with food and boluses. 2) for anyone, protein and fat make for a longer, lower curve than carbohydrates, and so a bedtime snack should have protein and fat in it. I don’t know what you gave him for a snack, but things like juice or crackers are out. Even milk has too many carbs. But a piece of cheese might do it.

As far as the scratch, it wouldn’t hurt to call the manufacturer and see if they will replace it. It’s not really a warranty issue, but if they want you to be successful with the pump, they should be willing to help you out.

I think you should have a continuing relationship with a CDE or someone with knowledge of children on the pump – it’s very painstaking at that age, and as soon as you think you have it down it will change, because children have growth spurts and slow-downs which affect their insulin needs.

Good luck!

Ugh, let me just tell you first that dropping from 360 to 32 feels absolutely horrible. Poor kid! Imaging being on the 95th floor of some huge building in an elevator and someone cuts the cable to the elevator and you go dropping down…that’s about what it feels like. For me, that kind of glucocoaster can be debilitating.

I think people have made some good suggestions here. I would definitely consider going back to MDI until this is figured out, but don’t give up on the pump. It’s a really nice gadget and can really help control if used properly. If they had been more readily available when I was a kid, I think I could have benefited from one.

Have you changed the infusion set to rule out any issues with that? Sometimes, small clogs can develop and then “push through” too fast with a bunch of insulin during a bolus. In my experience, 90% of issues with the pump have to do with the infusion sets. Because your son is so small, it’s just going to take a little insulin to cause a sudden drop.

His basal dosing also might be off. My basal dosing was really hard to figure out on the pump and I had to do a lot of ‘trial and error’ to find basal rates that work for me. I never do formal basal testing; just small tweaks and then test a lot and track to see what my numbers look like. That works best for me.

Also, as someone suggests, I would try running it just with boluses (and using your traditional basal insulin, such as Lantus) to see how that works. If anything, it’s just good practice. The I:C ratios should all be the same in theory, but I actually find I need less insulin on my pump because it absorbs better than with MDI. So my I:C ratio on injections might be 1:10 but on the pump I can get away wtih 1:12 or 1:14.

I would also call the manufacturer or talk to your trainer because it is possible there’s an issue with the pump itself. Maybe have it swapped out just to be safe (and that would solve that scratch on the screen issue too!)

Finally, I have never used the Animas pump, but you might want to give Minimed a try. Personally, I feel their pumps are better, but that’s just me. I use the Revel now and have had very few issues with it. I’ve heard from parents that it’s a good pump to use with kids.

In terms of the scratch, think of the pump as a very, very expensive iPhone. Get a good case that he can keep it in. There are lots out there for kids - see:

http://www.pumpwearinc.com/
http://www.angelbearpumpstuff.com/site/department.cfm?id=FD0258E2-85A8-446C-8011294F1580655D&killnav=1
http://mypumptastic.com/Default.aspx

Those are just a few. Google “insulin pump cases for kids” and you’ll get a lot of sites that have some great little pouches. Also, Spibelts (can be found at most stores that carry running gear) work great for stashing a pump. I have one that can be adjusted down to a pretty small size, and I am pretty sure I saw smaller ones when I purchased it. Definitely get something like that to keep the pump safe. And make sure to also keep all the tubing rolled away, because I can tell you from experience it HURTS when tubing snags on something and yanks out your set!

Have you changed his infusion set? What I would think, if this happened to me, is that my infusion set’s in a place with poor absorption. I’ve experienced infusion sets that seem to cause my insulin to ‘pool’ under the skin…and then I don’t get my insulin when I need it, resulting in highs. But eventually it DOES get absorbed…but by then I’ve given so many corrections I go super low and it’s hard to get out of. If I see even one day of this pattern now, I assume this is the issue and change the set. As you continue pumping you will discover the ‘sweet spots’ where absorption seems perfect and the ‘duds’ that you will want to avoid in the future.

Another suggestion - when he is over 300 and you do give him a correction…give him an injection. This will get it into his blood stream without any question of ‘what’s going to happen now?’ If he responds to the injection you know it’s NOT an issue with his ratios (at least not his ISF) and can say it must be the pump/infusion set.

As far as his screen goes…did it come to you with a screen lens on it? It’s like a thin clear piece of flexible plastic over the screen? Mine came with one on it - I had assumed that all Animas pumps came with one. This is meant to protect the screen from scratches, and then if that screen gets scratched you can just get a new lens. If not - call Animas. You have a new pump that is under warranty - they should help you!

I appreciate all of your responses and they are all great suggestions. We are definitely not ready to give up but this is extremely stressful. I will definitely try giving him an injection next time he goes super high and hopefully that will help us identify whether or not it is the infusion set. We have changed his infusion set. We actually have done it three times in four days because we are trying to identify if that is the problem or not. One problem is that since he is so young we were told that our only option for the infusion set sites is his upper backside area.

As for the scratched pump and screen, I am going to call Animas later this afternoon and beg for a new one. We have already placed an order for a skin but have not received it yet. Also, the pump did have a plastic lens on it and we stupidly took it off during our pump training class. The CDE said that most people take them off. Since we litterally have never spoken or met with anyone from Animas since we received the pump three weeks ago we did not realize that we should leave it on. Looking back now it does seem obvious and I will take responsibility for making a dumb decision and pulling it off. Hopefully, the Animas folks will be gracious and understand that this is a 2 year old and that he has only been wearing it for four days.

Thanks,

Chance

Since you got what I would consider marginal training I would question the settings. First of all, of course make sure you’ve set up the meter and pump to communicate. It doesn’t happen automatically so if you are giving insulin from the meter and they are not communicating…but I believe it would tell you that. Then I would go through the manual and check that all the settings input into the meter are correct. I’m a firm believer in “garbage in/garbage out” so if the pump doesn’t have your correct settings for I:C ratios, Correction Factors, Basal doses by time period, Duration of Action, etc. it will not be offering the correct doses. If you have checked all this, then I would look to the infusion sets. When you remove one look to see if anything looks wrong - bent canula, blood, etc. It does take awhile to get the feel for insertion and any “3 year old wiggle” could make it go in wrong. I lost a lot of sets the first few weeks and I’m a lot older than 3!

I just got on my pump in January and I did find it to be quite a learning curve. I did get Animas training initially but then refused their follow-up. I’m a strong believer that if you tweak your own numbers you end up a lot more knowledgeable and capable. Generally you need to start on a significantly lower dose than MDI, and sometimes they are conservative and start you way TOO low. It is definitely a few weeks or more till things smooth out. I would suggest working on the basal first and getting it set into several different “time zones” for the settings your son needs at different times of day. But bottom line, yes, I agree your experiences are more extreme than the usual adjustment period and I can only imagine how concerned you must be. I might ask Animas if they can do REAL training with you and then you can give them the data you’ve already accumulated and have them problem solve. Best of luck - hang in there, it WILL get easier!

Ditto here on this issue you note. I hate when multiple corrections to treat a high result in a wicked, wicked low that just doesn’t end.

Contact Animas and find out about re placing his pump. As far as his glucose being so high or loe you need to contact his doctor.

Be careful with Animas stacking insulins. Firstoff what is the duration of Insulin set at - Many trainers advise too short of a duration of insulin. This leads to a stacking of insulin. John Walsh wrote a good piece on Insulin duration, IOB and correction bolus. Animus will subtract it from the BG correction but not from the carbs - so I think for the most part the BG bolus will be accurate, but the Carb Bolus may be excessive if there is insulin on board. Insulin generally takes a while to work and there is a tendency to overcorrect. What Insulin are you using. Bit by bit you will learn to adjust all the factors and in time will see significant improvements - I would not give up. Have you got the book Pumping Insulin? I have been pumping for 22 years and I still learn things

You have had some good suggestions. One thing I did not see mentioned was air bubbles – have you checked the tubing when he is high for bubbles? I had two Pings replaced because air bubbles in a matter of 8 months. One of the questions that Animas asked was if I moved around a lot. I have seen parents with air bubble problems and they were told it was because their kid jumped around too much. If that is the case, they should not selling pumps to kids. I use a walker & don’t move much so mine were not caused by jumping around – I had defective pumps. If you are not getting all your insulin, your BS will go up. I had major gaps of air in my tubing. Look at the tubing closely next time he has a high.

I agree with Zoe that you had marginal training if that trainer suggested it was OK to take that film off. That might be OK with an adult but when you have a kid involved, I can’t see why she would suggest that. If Animas is reluctant to replace the pump, I would definitely push that it was taken off during training.

If you don’t want to totally remove the pump, you could try just using it for basals and do the boluses via MDI. That would help narrow it down a little.

I went back to MDI because the sites were just too inconsistent for me. There are good things about the pump but it wasn’t for me. At least I know what I am getting when I stick that needle in.

Since you have chaged his infusion set so many times I doubt it is an infusion set problem. It sounds to me like intitally the I:C ratio needs to change (310- >400 mg/dl after eating) and the ISF needs to be less aggressive (310 to 30-40’s in 1 hour). I would probably check after meals like you have been and see whether or not if you DO NOT correct at the high post prandial the blood sugar will come down (I know the 300 is something you want to correct for quickly, but is it the meal bolus or correction bolus that makes him drop so suddenly?). Seems odd that the blood sugar would drop that quickly so I suspect the meal bolus may be just a little behind and/or the correction is WAY too much.
All interactions I have seen others have with Animas would lead me to believe they will replace the pump for you. I think especially for the kids they are more apt to be forgiving when the screen gets scratched. Your trainer saying most people take the screen protector off is ridiculous. I would guess they have not trained on Animas for a while. The pumps used to come with a screen protector like when you first get a cell phone (those thin filmy ones). Animas now puts on a thick sticky protector kind of like what you would put on a cell phone after buying it. When you guys took it off was it somewhat difficult to remove? Did you really have to peel on it to get it off? They usually are at least a little difficult to remove.

Take a look at this presentation on Bolus differences and how pumps calculate. I don’t use the Ani,as wizard but instead will subtract the IOB when inputting the amount to bolus. If you do not subtratc from the dose, you will stack insulin and drive to an unexpected low



This presentation also discusses the duration of insulin. If this is set too low, it will cause correction doses to be too big. The pumps are smart, but if the right values are not used, they are pretty dumb and we as pumpers need to be smarter than them!

There is several good presentations at Diabetes Net. Com Unfortunately the links are down today but Walsh is a good guy to read and help learn more about the pump.

Have you considered the CGM yet or is your child too young for that? Good Luck and I hope things improve quickly
4324-bolusdifferencebypump.ppt (948 KB)

If he has a Teflon allergy like I did, it could still be an infusion set problem. I had erratic BS like that with the Tefton sets. After I switched to the steel sets, they were OK for the first 24 hours. Some died at 30 and some made it to 48. They were never consistent. I think my body just rejected the idea of something foreign there. I also was also getting a lot of scar tissue even though I rotated my sites and had little red dots all over so I knew I was not putting a new site any place close to an old one.

Before I got my pump I joked about “checking the pump’s math” making fun of myself for being overly controlling. However, I’ve read the explanation for how and when the Ping subtracts IOB and it’s a bit like remembering the formula for for converting Celsius to Fahrenheight. (which I finally learned to do after living in Guatemala for two years!). So I now do always look at what the Ping suggests before I input my numbers. At first I thought it would have been easier if the remote input the dose and let you change it up or down (rather than making you input it each time). But now I realize that would make it too easy to click “go” without thinking it through. Ít’s not like I think the pump can’t do math, it’s just it’s rationale for when it subtracts IOB is complex. Also I have found that if I am low and I subtract from my bolus then I will be high after. I found while on MDI that I actually need the bolus indicated by my I:C ratio, but I just take the bolus right before I eat instead of waiting 15-20 minutes. So that’s another thing I override the pump for. (I just go past “add bg” and click on “show result”.

Zoe, when someone was talking about the dose automatically being there, someone said that MM holds the patent on that. Apparently, that was also the reason Cosmo went out of business - they used the feature and got in trouble with MM.

Yes, I do remember now reading that, Kelly. Pretty strange that individual features that are just small details can be patented. Also funny the things companies do to get around it. I remember in my Type 1 group mentioning that Animas was the only pump with a remote, then laughing when the other pump owners pulled out the little key chain thingie that they also called a “remote”. So I guess it is the function, not the actual name that is patented.

It seems strange to me also Zoe. Every pump company wants to be different anyway so they can sell you on their pump. What difference does it make if you have some of the same features.

Ok so maybe it is teflon. When the pump suggests a correction bolus how close is it to what you would have given on MDI? If it is w/in 5-10% maybe it is teflon allergy. If not I would guess too agressive of a ISF. Either way I would try to “test” as many different theories as possible before you go in for changes.

Well Medtronic patented it and now they market it aggressively. It is part of their patient information packet. If you have noticed people cite “too many button pushes” as a reason why they do not want the Ping. Where do you think they are hearing that from??? Medtronic (who conveniently holds the patent).

OmniPod payed Medtronic for the ability to use the patent. Cozmo did not. Who is out of buisness again?