I am really sad. 5 months after starting my 4 yr old on a pump and I considering quitting

I have never seen so many 20s mmol (360) as I have seen since putting Payton on the pump. His A1C was 7.2 on needles with considerable effort by my husband and I. My son is 4yrs old. Diagnosed at 3yrs. It is time for another A1C. I don’t want to find out.

I love math, I like to talk numbers, I am good at carb counting and even like it. After having an immense amount of problems with starting Payton on the pump, I never gave up.

I tried Orbit micros for 3 months, Cleo and Rapid D for a few weeks, now Payton is on Inset IIs.

We have had insulin bubbles under the skin twice with Orbit Micro, occlusion alarms a lot. Twice the tube came off the cartridge sending him over 30 (540) and lots of blood in the tube.

He has an unpredictable Dawn Phenomenon, on a good day his site will last 30 hours, on a bad day like today his site lasts 10 hours.

4 times Payton ripped the metal infusion set right out of his bottom by accident. We finally gave up on Orbit Micros.

Payton’s bottom won’t absorb any more insulin. We’ve moved to the legs. Legs are hit and miss whether the site will last more than a day. We already used up the legs on needles 6 months into the disease but it has been 9 months since we’ve used the leg. Shouldn’t it be good by now?

With the Inset IIs we have had one bad kink and two small kinks. After consistently putting them in the freezer before use it has cut down on the kinks 99%. We have a lot a lot a lot of gigantic bubbles in the tube. It is a guarantee if there is less than 10units left in the cartridge the occlusion alarm will go off. We change the cartridge and insulin after it gets down to 20 units now. We do all of the things you should do. Insulin is warm, cartridge cap is within 6 mo. Pulled the cartridge ring back and forth two times to distribute the lubricant. Filled the vial full of air before inverting it. Making sure all of the bubbles are out of the cartridge before connecting the tube. Full battery on the pump. Priming all of the bubbles out.

After a day sometimes I will find a bubble an inch or more long in the tube. When is the alarm supposed to go off? My kid is 4 and jumps around and is upside down a lot. There is no belt or contraption to hold the pump in a vertical position that will work.

Pizza and Peanut butter are out of the question because I can’t seem to make a perfect combo bolus for him. He goes high on hour #6 sometimes after eating them and sometimes the exact same pizza and combo bolus will work.

The bath makes him go super low. I have to feed him 13 carbs to compensate.

So after 5 months of this garbage and staying strong and making little rules to remember for this and that you know what happens?

My husband changes the site yesterday. I lasts one day. I change the site this afternoon because he hit 20 (360) {I poked 2x to make sure} and he gets into range within 1 hour with 1.3 IOB. OMG. so I feed him a yogurt and cucumbers and peanuts without insulin and he is fine (2pm). He is fine at bedtime snack (730pm) and then 3 hours later (1030pm) he is 21mmol (378 in USA) with 0.1 Ketones. I correct and an hour later he is exactly the same with 0.00 Ketones. WHAT?

So now it is Midnight. Husband already went to bed after the first bad poke knowing it will be a long night.

What am I supposed to do? I have been watching for bubbles all day and there were only little tiny microscopic ones every now and then.

Am I supposed to change his site every day and if I get a bad one then I change it again. So 3 new sites in 2 days?

Is this the better alternative to long acting insulin?

2, 20, 2, 20 bounce bounce bounce. This is so awful for Payton. He is healthier on needles.

Hospital used to get back to me right after I faxed in the numbers, now they wait 2 days to call and then ask for updated numbers because the numbers I faxed in are old. Then when they get the numbers they try to fit him into some kind of mold. Like his basals and boluses should be a certain percentage of each other.

I can’t help it if his basals are too low compared to the TDD. He is constantly jumping. ALL DAY. If he watches TV he jumps the whole time. When he is in swimming lessons he jumps in the water the whole time. Surely a perpetual motion machine would have lower basals than everyone else in the world. The hospital probably thinks I am not listening to them so they have lost interest in helping me. I haven’t talked to the hospital since 01/01/2011.

Besides, they have a new batch of pumpers to look after. Husband’s checked out recently. Too much stress while he works and goes to school.

Sigh. I feel defeated.

I just went and poked him again. 16 (288). At least he is coming down.

When does the pump work? This sites have to last longer. How do you do that?

I feel your frustration. I have a 5yo that has been on the Ping for 1 year. I am so sorry for all that you are going through. Have you tried the stainless steel infusion sets. We use those and have been very successful. Look on the animas website for them. We also have a VERY active boy and have never had a kink. Air bubbles sometimes but we have learned (when prepping the new cartridge) to fill the cartridge with insulin and let it sit for about 1/2 hour to allow all the bubbles to float to the top and then we get them out before completeing the hookup. Finally, as far as the sites on his body, have you tried the back of his arms. We use that as well. My boy does not have enough fat on his belly or legs so those areas are not good for us but the back of his arms works well. Also, we use lidocaine to numb the area before we insert the infusion site. It makes the insertion completely pain free. It is available by prescription so you will need to ask your endo for it.
As far as his site coming off, have you tried and adhesive like mastisol? If not, that really works well with in combination with the IV FRAME 3000 tape. My son’s sites will last 3 days with all of his wiggling, jumping and squirming through baths and all!..and swimming in the summer.
Finally, have you looked into “detached pumping” where you use a long acting insulin(shot) and just hook up to the pump for boluses? We have considered that for the summer when we have even more activity.
Regarding his erratic sugars, I recently learned that it si very common for toddlers to have very high sugars both in the morning (dawn phenomenon) and late evening (10-12 pm). Have you done any basal testing lately? If not, this may help to hone in on his insulin needs at various times of the day. My son spikes in the morning and then again about 11 pm. Remember that many factors affect blood sugar. Stress, food, illness, etc etc. Also, my son is more insulin resistant in the winter than summer so he doesn’t need as much in summer.
I am so sorry things are so rough and very disappointed that your medical professionals are so slow to respond. Please let me know if any of my ideas help and hang in there. You are doing a GREAT job.

Melissa, My heart goes out to you :frowning: I have a few ideas and thoughts that popped into my head.

Are you sure it is the sites that are going? or a possible Basal change? The reason I am asking is, because when my son first started pumping he had at least the first day fighting lows, because it was a new site, then once the new site lows stopped we had to deal with highs for a couple hours after because of all the extra carbs and -temp basals we need to give him to help keep his bg up. Without having the site in for more then a day and the fact that he is having some lows from site changes, I am not sure how you would know his basal is correct. My son has been pumping for 2.5 years now, bum sites only, he is less the 35lbs and we still do basal changes almost weekly.

Surely a perpetual motion machine would have lower basals than everyone else in the world. The hospital probably thinks I am not listening to them so they have lost interest in helping me.

my ds NEVER sits still, he sounds very much like your son, and with growing we are constantly upping and lowering his basals. It took us almost 2 years of lows on site changes days to see it stop, and even now we still get them, just not as bad. I would try leaving a site in a bit longer and doing a +temp basal to see if his basal changes do need to be up. If his basals are not high enough then corrections will not work like the should. You could be right about your hospital, if they don’t think you are listening to them, they might have given up a little. But the other question is have you tried what they are suggesting?? My Ds has a 40-60 to a 50-50 Basal to Bolus ratio…Some days when he is hungry the bolus is way higher then the basal, but you have to remember their body is use to moving all the time, So he might need more basal, my thought would be yes, you just to need to figure out what time of day his new basals need to start.

He is fine at bedtime snack (730pm) and then 3 hours later (1030pm) he is 21mmol (378 in USA) with 0.1 Ketones. I correct and an hour later he is exactly the same with 0.00 Ketones. WHAT?

If this is what is happening most nights, it looks like he needs more basal at night. My Ds has a very high basal at night, looks like it should start at around 8pm to help with the 10:30 highs. I would not worry about the 0.1 ketones they are the same as 0.0.

Another thing is I would try switching to NovoRapid! We have just recently switched to humalog and we are not getting the same life on sites as we were with novorapid. But we have discovered that he is sensitive to novorapid, so we are trying humalog. We get no more 2 days out of a site on humalog but would get up to 4 on Novorapid. It is very very close to humalog, and might be worth a try!! Also less bubbles, we are getting a ton of bubbles with Humalog.

Bubbles!!! I hate bubbles here are a few tips that might help.

  1. Make sure the insulin is room temp. If it is not room temp when you put it in the cartridge let it get to room temp. It makes it easier to get the bubbles.
  2. Leave the cartridge rest for at least 30 mins to an hour, I leave it over night and change it in the AM if I can wait that long.
  3. Use a Pen to tap hard a few times on the side of the cartridge…flicking with your finger is not strong enough. Try both and I promise you will get more bubbles when you use the pen! This trick has saved me so much over the years.
  4. Once you have the bubbles tapped to the top, push them out, and hook it up.

It is the best way I have found to do it, but I will tell you, you will still get some, just not as many.

Don’t let the orbits turn you away from steel sights, I know alot of people that swear but the contact sites. They might help!

Another Question that keeps coming into my head is, are you more comfortable with needles?? The Pumps are great but they are a lot of work and a bit more stress. I know in the support group that I run, we have a few parents that are terrified of a site failure, and because of that pull sites very quickly, without giving them a chance to see if it is working. It is totally understandable, as it is there child’s life that they are trusting a machine to keep alive. But not always the right choice. There are so many more things to think about on the pump, and they are not always easy to regulate right away. I did not start changing pump setting on my own for almost the first year, I relied on our endo to do that. I am not sure if that is happening here, and please dont think I am trying to insult you…far from it. I would love to help in any way I can. Sometimes it is honestly a matter of comfort and security. You are going to see highs pumping, and if your basals are not right, you bet they are going to be high and stay high.

Take Care

I am also going to suggest trying the steel sets. I just started pumping the end of June and my sets were constantly breaking down early. Several people suggested it could be a reaction to the Teflon. I did not think it was until I started getting hives & switched to steel sets. Even if it is not a full blown allergy, his body might not like the Teflon.

It sounds like you are doing a lot of the things they suggest doing. I also went thru a bubble problem this last month and talked to Animas several times about it. Mine were also big 1-2 inch gaps of air in the tubing. Like was mentioned by the others, one of the things that they told me to do was let the cartridge sit upright for about half an hour after you fill it with insulin. Take the blue plunger off the bottom but leave the needle on the top. They said that if there are bubbles in the cartridge, they will work their way to the top.

They also wanted to make sure that I was only pushing the plunger up & down and not turning it. I was told when you first pull the plunger down, some air will come into the cartridge – I was pushing all the insulin back into the vial and they said to only push the air out.

You don’t mention if you talked to Animas about this, but I would suggest calling them if you haven’t. One of the things they asked me was if I moved around a lot – I don’t but I also don’t understand why they would suggest this pump for kids if a kids moving around is going to cause a problem. Mine ended up being a pump problem – although even when Animas said they were going to replace the pump, they still said they did not think it was the pump. If I was doing everything right then it had to be the pump. They even watched me filling the cartridge & putting it in the pump and agreed that I was doing everything right so it had to be a pump problem. The problem also went away with the replacement pump. When I was searched the group for bubble problems, there was another woman that also had the same problem and also had her pump replaced. I would ask Animas to let you or your husband wear the pump using saline – if you get bubbles, then it has to be the pump & not your kid jumping around.

I have no idea if the basals are correct because right after the site change I do a temp (only at night) for -40% all night. Then the next day if I am lucky (and had picked a fatty unused spot for the site), the basals will work perfectly the second night.

So is the 40% difference between day one and day two normal? If it is consistent then fine. I can make a rule and I have but it is not consistent.

How am I supposed to know if I am going to have a “Day 1” and a “Day 2” or the site is bad because I don’t get the Day 1 lows ? It really concerns me when for 10 site changes in a row I do -40% on Day 1 and then this last site change he is super high for hours.

I will soon find out if it is the site because his numbers during the day are always predictable and if he is high after just having breakfast, that site is coming out.

I don’t mind needles, I don’t mind sites. January is the first month since we started in Aug that I have been taking those sites out after only one day. After everything I tried, this is the flavor of the month that I am trying.

I do bang the cartridge pretty hard against the side of the table to get the extra bubbles to go to the top but you have mentioned something someone else said that I haven’t tried. I haven’t tried leaving the cartridge with new insulin out over night and changing it in the morning. A parent who is a doctor also said that he notices that the bubbles will form along the seal, then he takes them out and loads the cartridge.

I was very diligent last night with filling a new cartridge. Someone else said she gets bubbles under 46 units of insulin left in the cartridge. I would have to say definitely more bubbles under 20 units but she may be right about the 46 units. I will have to watch.

About being terrified about site failure, I would have to say if anything I am not diligent enough about testing Ketones and for 4 months I have tried to squeeze everything I could out of a site that was actually failing. It is just January that I am wondering if I should just change the site every day to get more consistency in the numbers.

Argh! Looks like I need to get the nurse on board again. I finally got the software to work on my Mac since it didn’t work on my PC and I am seeing a lot of times that the TDD for Day 2 is a lot higher than for Day 1. Day 2 I was increasing basals 150% sometimes and doing 5 or more bg corrections.

How can the two days differ so much? Is it supposed to?

There are Animas metal sets? Do they have inserters? Are they 90 degrees?

Someone mentioned that since Payton’s basals are 0.05/hour from 8am - 5pm that maybe the tube inside his leg is getting clogged. If I had a higher basal, perhaps this wouldn’t happen.

What I don’t get is this, basals are supposed to match the glucose output by the liver right? So, because my boy is so active, I have a lower basal. If I increase it like everyone says, then I would definitely have to feed him to prevent a low. Why should I have to do that just to fit into some mold or percentage people have made? He goes to playschool and I don’t want the teachers to have to feed him all of the time. I already have to feed his activity a little bit (5 carbs) while he is at preschool.

Well, I have to admit, the pump was never set up properly at night by the hospital because there was no consistency. I gave up on the hospital when they weren’t calling me the same day. I would labor for hours filling out these charts they wanted so they could look at them before 12 noon. They want them faxed every TUE and FRI. So they call on THURs and tell me to fax them in 2 more days so they can get an up to date view of his numbers. Well then it takes me another day(FRI) to fill out two more days of charts and then I fax them in and they don’t get back to me until after the weekend. So then they suggest something for me to do anyway but by then things have changed because nothing is consistent.

I am going to try changing insulins. I am pretty sure that the inconsistency day by day comes from where I put his site. I have had weeks on the back of his legs where the site lasts perfectly for 2 whole days then fails on day#3. The legs are used up and don’t work anymore just after 16 site changes (1 month).

I will try the arm on the next site change.

I am going to poke Payton now.

HA! I knew it. The site has gone bad. He is never 18.3 (329) at this time of the morning. Never. So last night, the 20, 20, 16 that I was getting after having a new site in for 10 hours was actually the site going bad. Hmmm! I knew I should have ripped it out. I am leaving the legs now and moving to the arms.

I need this child to grow some fat. LOL!

Tried stainless steel Orbit MIcros for 3months. Just changed from leg to arm. Thanks, we’ll see how it works. Site doesn’t come off, it just doesn’t work after 10-30 hours.

If the arm and changing insulins doesn’t work, I will look into detached pumping. Sounds interesting.


Ask Animas to send you some of the Contact Detach - that is their steel set. See if that works for you.

I use Comfort Shorts, manually insertible sets, and adhesive called Mastisol, I think it might help since I had problems with the other sets I tried. Mastisol is a surgical adhesive and really helps to keep sets in place. I used to have alot of problems with sets coming out until I started using it, and Comfort Shorts really help for me as I have very little body fat.
Mastisol is sold in individual packets and small bottles; the bottle really works wonders, just spread a little on the leg and 3 days later its hard for me to pull out the set! ( I am 6’2 and 220 lbs.!) The adhesives sold by Animas never worked, they werent strong enough. But believe me, Mastisol is, and will stay even in water like you wouldnt believe, and during workouts, soccer games, etc.
Hope this helps!

Everyone has give you great support. Cheers to the TuDiabetes family. See if you can get a piece of the smallest diameter “surgical stocking/netting” from your doctor or hospital. Use it to provide addition support for a back of the arm insertion, if possible.

Keep up the good work with Payton.

Some supply stores also carry the surgical netting stuff. I bought it when I had a PICC line in. My home nurse originally gave me some and I was able to find it at the supply place. It was not that expensive.

Good idea.

Well. Yesterday morning Payton went really high. I put a new site in his arm and gave him way more insulin than the pump suggested. In two hours he was within range and I fed him to take care of the IOB.

Then for some reason, instead of his basals being +100% or+150% last night it had to be -80% last night for the entire night. How can Payton exist at 0.04 units/hour at night? Must be the arm site or maybe he is not fighting something?

Thanks everyone for helping me get through feeling awful. I am expecting this site to last all day today. I will see how many sites I can get out of his arms.


I really think this could very possibly be the insulin- I hope it is this easy for your sake! How terribly frustrating this has probably been for you! I know it was for me and I can only imagine if it were one of my kids… This is the EXACT same presentation I was having when I found out I cannot put Humalog in my pump (Humalog injections worked fine for me). I would get 12-18 hours out of a site and they were done. Would get really high blood sugars that would not respond to correction. Change the infusion set and get another 12 hours -------------Rinse and repeat over and over. Once I started with Novolog (Apidra worked good for me as well) there was an immediate difference! I hope this is the case for you as well.

Wishing you luck.