Pump definitely no "auto pilot" - anyone feel same?

(ryansmom) #1

Hi group.  Our 10-year-old son has been on the Minimed pump for 2 1/2 years and, admittedly, we like it much better than doing injections all the time -- and we love having the freedom to eat whenever, BUT . . .

After all this time, we still can't bolus based on the pump's "recommendations."  We are still constantly giving more insulin or less insulin than the pump's recommendation because of upcoming or recent exercise, varying emotions, periodic stress, a recent high or low, etc.  ARE WE THE ONLY ONES STRUGGLING WITH TRYING TO HAVE THE PUMP WORK WITHOUT EXPENDING SO MUCH MANUAL "GUESSWORK?"

Our son is also on the Medtronic CGMS and our endo is constantly working with us to try and change the pump settings to get his BG's in the target range, but it's a never-ending battle.  Our son is VERY active and at the pre-puberty stage which I'm told makes things very difficult.  His A1C is between the high 7's and low 8's -- but it's a TON of work and I feel like we GUESS so much of the time.

Why do I feel like we're the only ones having to work so hard while utilizing the "latest, greatest technology?"

(ReneeC) #2

Hello,  My son also uses the minimed but he is 7.  I do find the pump needing adjustments with every season change as well as activity change.  Jarett is very active also, but each sport brings different response to his bs, we have had to change insulin needs based on activity depending on what sport "is in season".  I have utilized the temp basal for those crazy days and I like that feature.......

(ryansmom) #3

Thanks, Renee, for your response.  We too change the settings with different seasons and school days versus non-school days.  And you're right about different sports requiring different settings too.  We utilize Pattern A (50% less insulin) and Pattern B (25% less insulin) for times when Ryan is more active for long periods rather than just sitting around watching TV or being in school.  And we use the temp basal for times when Ryan isn't feeling well.  I guess everyone sets up their pump to match their needs and activities.

I was referring more to the times when Ryan has just completed some sporting competition which adrenaline has caused an incredible high and if Ryan wants to eat something, the pump would call for a huge bolus to bring the high down.  However, from past experience we know that the adrenaline will soon deflate like a balloon, and if we give the huge bolus, he'll go very low.  It seems like there are constantly things like that to deal with -- we're always second-guessing the pump.

Ryan was diagnosed at 7 and we seemed to hum along fairly evenly -- things were fairly predictable.  But around 9 years old, we saw a definite change -- whereas in the past activity used to bring Ryan down, now the competititive nature of boys turns on adrenaline and they skyrocket.  You may want to be on the lookout for that with Jarett in the next couple of years.  We used to counteract activity with more carbs, but now that seems to be the opposite of what we need to do.  We know that Ryan will rise until the activity is over and then he calms down and flattens out again.  It's tough to predict.

(Hania) #4

Yes, I feel the same. My son is also 10 and has been using the pump for a little more than a year. He is also very, very active and we are constantly making corrections. We also are dealing with emotions, stress and also he is growing like crazy. I understand that growth and sexual development hormones affect bloodsugars. We are dealing with that. I think that diabetes is just that: a lot of work. I hate seeing the highs and the lows but at least we can deal with them. 

Where does your son wear his CGMS? We tried using one and had problems with calibration. Therefore, the readings were never close to reliable (100 point variance!). My son is quite slender so he had to wear the CGMS on his upper back pocket area of his bottom. Every time he sat down in the car or leaned back on the couch, the communication between pump and CGMS was cut off. It was frustrating! We would love to use it as an additional tool. Any suggestions?

(ryansmom) #5

Dear Hania,

Our son is slender as well.  Actually, he's very muscular and not an ounce of fat to be found so we are often hitting muscle.  Makes finding spots for the CGMS a trick.  What we've been doing is placing the CGMS where the center of a back pocket would be on a pair of jeans.  It's more in the center of his cheek.  We do lose communication between the monitor and the pump occasionally if he rolls over onto it at night, or once when he fell and landed on his bottom.

My husband and I think that these young kids are difficult to find any fatty areas to make a good connection.  Have you tried the stomach at all?  Unfortunately, our son balks at using the stomach for both the pump infusion site as well as the monitor, but we find that if we insist on occasionally using the stomach, his readings are among the most reliable.  Ryan hates the thought of the stomach but we wish we could get him to use it as a site more often.

Another thing that has greatly helped us is that my husband always tapes the CGMS transmitter after insertion.  We have found the tape "Nexcare, Absolute Waterproof Tape" (by 3M) to work great.  We purchase it at CVS Pharmacy in our area - hopefully, you can find it locally as well.  We leave the tape on all the time -- showering, swimming, everything.  Occasionally you have to replace the tape, but usually it adheres for the duration.

My husband does all the insertions and we too had a lot of variance early on.  After the initial couple of tries, however, things are usually pretty close to tracking with the BG levels.  We wonder if with practice, things get inserted a little better (?).  Do you use the inserter?  If so, my husband said to make sure that you keep the inserter at a 45 degree angle.

I hope this helps.  Please stay in touch.  Our son has been on a growth spurt for the entire 3 years he's had diabetes, and it does make things very difficult.  I appreciate how you feel. 

Thank you for responding to my email.  I think the pump salespeople make so many claims related to ease of use that when things don't run as smoothly as you've been led to believe, you naturally think you're doing something wrong.  I really appreciate knowing that we're not alone.

Linda

(Hania) #6

Dear Linda,

Thanks for your reply. I think that I need to wait with the CGMS because of two things. He is too slender to have an insertion site on his stomach and whenever he sat in a car, or slept (he sleeps on his back) the pump and the CGMS lost communication. I have been trying to make him gain weight....he does, but he always does it combined with growth. Thanks for the tips regarding the tape and the insertion sites etc.... We might try again. It was just so frustrating having the recalibrate at all hours of the night and never having readings that were close to reality. We seem to have found a routine of testing and retesting that then indicates the trend of his blood sugars. But, it does require a lot of testing. I think that this diabetes thing requires attention to detail and extreme tenacity. Lets stay in touch! Hania

(Tracey B.) #7

Hi - I feel exactly the same about the pump - it allows more spontaneity and not having to deal with injections and packing insulin is a plus.  I think that the 'guesswork' is just a part of life with the pump because it doesn't know excercise, stress or the impact of puberty and growth hormones.  My daughter is 13 and plays many sports, hockey being her fave.  She can be 8 before a game and then with no food on board climb to 20 by mid game because of the adrenaline and excitement.  We are conservative with the corrections because she can get pretty low after her sports.  We have found that even if she's 8 or so she needs to eat a banana to prevent a low.  Spiking blood sugars for sports are my daughter's biggest pet peeves with her diabetes and she feels she can't predict what her body is going to do and hates feeling yucky while playing.  I mentioned on another post one thing that works for her sports (we're slowly figuring it out  :)  is to eat 2-3 hours before so her insulin isn't working too hard and she takes an extra unit with her meal before games.  She is then sure to test 30 min before and always has a banana on hand in case, along with gatorade.  Often especially on tournament days or ski days we use a temporary basal to reduce insulin during and after excercise.  Our endo says that once we get through the teenage years diabetes will be a lot easier.  Her AIc's are also between 7 and 8 but it sometimes feels a bit like a yoyo for sure.  Hang in there - for me it helps to know we're not the only one feeling this way  - thanks

(ryansmom) #8

Hi Tracey,

Thanks for your response.  I'm sorry to hear that you are feeling the same frustration as us, but I'm also relieved to know that we're not alone.  I have a couple of questions, if you don't mind.  I'm unfamiliar with your "8" before a game and then climbing to a "20" by mid game.  Do you have some kind of a scale with 8 being a low and 20 being off the charts?  We normally refer to the actual BG's, and I'm just curious how your numbers relate to BG's.  I'm also wondering why you take an extra unit of insulin before a game -- is that to counteract any possible adrenaline effect and associated high BG's?

I'm relieved to hear that your endo feels the teen years are the worst -- I guess it can only get better from here (that's my hope anyway).

Sounds like you've found a workable method for dealing with your daughter's activities -- I sure wish there wasn't so much guessing involved.  Doesn't it make you wonder how they're ever going to come up with an "artificial pancreas"? How is any machine ever going to be able to predict activity, emotions, hormones, blah, blah, blah.

Thanks again.

Linda

(Tracey B.) #9

Hi Linda,

I'm from Canada and we use a different measurement system for blood sugars, to convert I think we would multiply our measurement by 18 to your system so 8 before a game is just right and I think about 144.  20 would be pretty off the charts at 360 so it's pretty hard to have any energy at such a blood sugar.

Giving her an extra unit at a pregame meal seems to avoid the adrenaline high bg, especially for hockey.  She then tests during the game if she feels off but always between periods (those poor little fingers!)  There have been a couple of occasions where 30 minutes before a game she has to eat a granola bar or banana but as long as we're careful this is easier to fix than a through the roof high.  I would be sure to run this by a professional before trying but it seems to work for us.

 

My husband is also Type 1 and has been for 28 years.  When he was first diagnosed there were no pack and carry glucometers, he had to pee on a ketone stick at school to guesstimate his sugars,  His first glucometer took 3 minutes and was the size of a small laptop - I just can't imagine . . .yet am encouraged because even with pretty archaic means he is a healthy person with no complications so far and AIC's consistently in the 5's.  Our daughter is not close to that yet but I can't help but feel thankful we now have the technology we do and that once she's done puberty and growing it will be easier to monitor and control her diabetes.

So for now we keep making informed guesses and do the best we can without getting too frustrated because at times it certainly is . . .I'm sure you can relate.

Anyway - nice chatting, Tracey

(ryansmom) #10

Thanks, Tracey!

That was very helpful and encouraging.  I was especially happy to hear that your husband is doing so well -- gives me great hope.  You're correct -- despite the difficulties dealing with diabetes, things ARE improving, and as long as we are diligent in our care, good health during a long lifetime is a very realistic goal.

Linda