My 10 yr old son was dx at age 8. After 2 long years he finally went on a pump 11/14/13. His numbers have never been worse. Unfortunately he got sick a few days ago and I know that can affect numbers but I can’t get him in range no matter how much we correct. He wasn’t very ill and is better now except for a mild cough. I’m waiting on a call back from the doctor now but I’m curious is it possible he simply can’t use a pump? We changed sites this morning. Fresh cartridge, insulin and infusion set and still he’s over 300. Maybe his body simply does better on injections. Any thoughts or similar experience with this?
Dear Jennifer
I understand your frustration, but i would not drop the pump after such a short time of trying it out. it can be that he needs other insulin dosage on the pump, or maybe it is that cough, those bugs can affect our BG more than we would anticipate.
I personally have never heard that a pump does not work medically for somebody, most people drop the pump either because they can not handle it or because they do not like it.
Give yourself some time and contemplate about it after things have cooled down a bit, i am sure it will work out after a while.
Wishing you luck
SC
Thanks for the words of encouragement :) Being the parent of a diabetic child is very trying. Although logically I know this is all new, it's hard. We switched to a pump so things would (hopefully) be better and easier. It's quite disconcerting to have this happen so early on. And him getting sick now just makes things more murky! I am trying to be patient but seeing those 300's on his meter makes me cringe!
Jennifer, my mom went through the same with me…
your son will be fine, i switched to a pump at age 10 as well and it made stuff so much more easier for me. D is a rollercoaster, and often we have no idea why our BG is now behaving exactly like that and not like it did yesterday…
You are gonna find the best solution for you and your son, i am sure about that. if it is not the pump, its not it, but be sure to have had everything tested out thoroughly, so you are sure you make the right choice… ;)
I understand your frustration, Jennifer. But I see he has only been on the pump for a little over a week. It takes awhile to get pump settings tweaked and honed in on the right amounts, especially the basal rates. Then when you add sickness to the mix....I definitely wouldn't assume the pump is not working for him at this point. What I would keep doing is keeping very good records of doses, times, and food. Then start to look for patterns. If he is consistently high at a particular time frame then you want to raise the basal rate for a period two hours ahead of the problem period. Like I said, it takes time - sometimes weeks to get it all functioning as it should.
I really wish he wasn't sick at all but if it at least wasn't NOW so soon after making the switch. It's scary when you correct and the numbers barely budge. I'm used to corrections with injections working wonders so this is a little uncomfortable for me.
One suggestion, Jennifer is to correct by shot. I had an unexpected 300 the other day and I just used my pump to calculate the amount, then disconnected and "wasted" the insulin so it would be calculated in my IOB, then used a syringe to take a shot. It makes for a quicker correction when you are in the stratosphere like that!
I actually just did that. I know the shot will fix things or at least improve them quickly. Now to just find a cure so this isn't an issue anymore!
Hi Jennifer, I agree with others to keep trying, as it takes a while to get the settings right.
Did your doctor/CDE do the original set up for the pump basal rates, correction and carb factors ? They tend to be conservative with the initial settings, to avoid lows, so that plus your son getting sick could explain the highs. Is his total insulin from MDI/pre-pump similar to total daily insulin on pump ?
Doing corrections by injection, and also adding a temp basal of 120-130% often works best for me to correct a high > 240. Once it's under 200, I cancel the temp basal.
Yes the CDE did the initial pump settings. They were a little conservative however we had already made an adjustment to correct the slightly high numbers in the middle of the night. I’m sure this is all probably due to his mild illness however when I correct I’m accustomed to seeing his numbers drop. 1 unit of humalog will usually lower him 100 points and the past few days 2+ units is only lowering about 40-50. I finally gave in and instead of bolusing at lunch we did an injection. Hopefully that helps. Even after 2 yrs his diabetes still gets the best of me some days. I try to take it all in stride and take the necessary steps to correct the problem but the stress is still there. He was 388 earlier so his pump dosed 2.54 which should, plus insulin on board, bring him back to his 110 goal but he only came down to 323! Eek.
Be VERY careful not to stack insulin. It is easy to do with a pump, as insulin delivery is super simple. Use the bolus wizard ot whatever computation device the pump provides and pay attention to the calculations. Also, when you correct with a syringe, you must calculate that dose into the wizard calculations (ZOE! what a fantastic idea!) Just be careful not to overdose him on insulin to bring the BG readings down.
Breathe deeply and stay on the path. The pump is a fantastic tool, especially for a child. Take time--it will take time, but be really worth it in your child's life with D.
Additionally, have you switched out the infusion set? When my BG gets really high, that is always my first move: new insulin, new infusion set and a new insertion site. With the addition of a dose by syringe it usually changes everything.
Hang in there, you're doing great, and I'm sure it will get easier. If you haven't already, you might want to get the book Pumping Insulin by John Walsh, which has lots of great explanations and tips on using a pump, and handling different situations.
Also, if he was at 388, and still rising (due to food, stress of illness, lower activity level, or poor insulin absorption from pump site, etc), that might also contribute to the unexpected BG of 323, 2 hours later.
Hi Jennifer,
Oh, so sorry to hear about your son. I too have had a terrible time starting the pump. As other's have suggested, it takes a lot of time and patience to get basal doses correct. Do you know what they used to factor in his initial basal settings, what's he pumping for basal rates, etc..? Did they give you instructions about testing for ketones, if high and after a 1 - 2 hours on pump with BG's rising or not coming down to give a manual injection. Sickness...caused by high blood sugars; chicken or egg, ya know. It's very difficult, when first starting pump to know if it's a bad site, infusion site or just 'wrong' basal - bolus, ISF rates. I've tried the pump now probably 4 - 5 times, I end up going back on shots because I'm so far off in terms of the correct basal rates and as we all know, when basal is off, everything else is off. Yes, it's frustrating. Maybe restart pump when son is not sick..that might be a better indicator of basal needs. Hope your Endo Team calls you back. Please make sure you check for ketones, he's probably sick from that too with numbers so high. My last pump attempt I stayed high, above 200 for 3 days, could not get BG's down with pump corrections. Prior attempt, I was dropping low all over the place, especially before bedtime. UGH! Good luck, keep us posted. :)
jennifer, once they're high like that it takes forever to come down. Those numbers are concering. Is anyone following you on the pump. My pump nurses have always been available on weekends if needed. Can you call someone, are you leaving it on?
Thank you for the concern and advice. It feels great to talk to others who understand. I believe the 388 was self inflicted. We changed infusion set, insulin, cartridge, tubing and site this morning before breakfast. After AJ bolused his pump gave an alert that there was a problem. I think the infusion set was not in completely correctly. We changed everything again. I hate to waste but wanted to be safe. The pump showed insulin on board so I wasn’t completely sure if he had gotten his insulin with the error. I didn’t want to risk him getting too much so he ate and rechecked 2 hours later. That’s when he was 388. Oops. So we corrected but 2 hours later he was still 323 and had not eaten. We called the doctor who did not call back so I gave an injection and did not bolus with his pump. 2 more hours later and after he had eaten he was finally down to 202. Usually I’m not happy about 202 but he never gets near 300 so I was relieved he was going back down. Finally spoke to the doctor 2 hours ago. She still believes it’s due to his being under the weather so advised to be patient. I’m trying! It was such a nasty surprise for him to be so high so soon after switching to the pump it made me wonder if maybe it was the wrong decision but thanks to all of the encouragement we’re going to hang in there.
Hi Jennifer, First, You inspired me to join as a member just this am. Everyone here is right.. my daughter has been on a pump for several yrs. first dx at age 16mo. and she is now almost 12yrs old. Getting back to your issue... With every pump she received, the last being just 3wks ago, there has been a transition period or "tweeking" period. before we saw her numbers settle back down. I beg you to contact your sons Dr and hav them make adjustments to the amout of long acting insulin he is getting. A good relationship with his diabetes medical team is key.
I've cranked up my basal to 200% the regular amount when I had an RX for steroids. I don't seem to get sick very much but I might try adjusting it a bit. I hope your doc comes up with something soon for you! Sometimes, I do the 200% thing when my BG is responding somewhat sluggishly or running up and it seems to help get things going but I also have a CGM to keep an eye on it with. That might be a bigger project to tackle but testing a lot can help see at least when it starts to work.
I have spoken to his doctor (well the one on call at least) twice since he got sick. I know they understand the medical side of things but I don't know if they truly appreciate the fear of seeing 300+ on your childs monitor. Especially when the numbers are fighting back and refuse to go down the way they should be. This morning I changed his basal to 133% for the next 24 hours and will also increase his bolus at meal times. I feel his doctors are good however we have only been with this practice for a few months. We recently relocated to a new state. So I am trying to get a fell for how quickly they like to make changes. The doctor doesn't want to risk him going too low during the night and I don't feel comfortable letting him run 250-350 for days on end. Luckily tomorrow is Monday so his regular doctor will be back in the office. The on call was very nice and listened to my concerns but she does like to wait things out to see if his numbers will come back down after he is completely well. I appreciate your insight and I'm so glad we both joined!
I increased his basal to 133% for the next 24 hours. I didn't want to overdue it although right now we're checking him about 9 times per day. I've been checking every 2-3 hours at night and he's been too high. I'm also going to up his bolus at meal times. His numbers have never been so difficult to bring back down so I wondered if maybe he's not absorbing the insulin as well with the pump. Yesterday we ended up doing an injection instead of boulsing with the pump and that worked better but that defeats the purpose of the pump. I'm keeping my fingers crossed that the increased doses today will keep him in range. There is always a doctor on call that I can speak to but they keep saying be patient! Don't they know how difficult that is when you are dealing with your childs health?