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[IP] a Pump-Mom's Perspective

    I received an e-mail today from a friend whose 15 yr old daughter had a 
DISASTROUS 3 1/2 months initiation to the pump - DKA, illness, you name 
it....so the doc has taken her off of it. I wrote to the mom & started 
recounting all of the things I've learned along the way & decided it was 
worth sharing with "the choir", in case others encounter frustrated new 
pumpers who haven't found the pump to be as great as they'd hoped....Here's 
my "cut & pasted" post....
    I feel so badly for how you must have suffered these past few months....I 
only wish you'd contacted me sooner. You were NOT alone - and if I'd known 
the problems ...X.... was facing, I would have/could have posted on the IP 
message group, soliciting help. There have been others who have needed MONTHS 
to get things rolling after a disastrous start up period. Sometimes it's as 
simple a matter as 1)changing insertion sets ( which was she using?) Many 
people who had problems with irritations, no delivery alarms, occlusions, 
etc. with the Sofset were amazed that those of us who swore by the Silhouette 
were actually right about how much of a difference it made.....And if you 
WERE using the silhouettes, another mom who had experienced several 
frustrating months finally realized she had to 2)get more aggressive about 
increasing bolus ratios and basal rates despite her CDE's "good intentions" 
in taking things very slowly...still others found that despite the standard 
ratios, etc. that their body just didn't follow the expected track as far as 
3)postprandial bgs, necessitating square wave or dual wave bolus 
solutions......still others found that 4)mixing Velosulin and Humalog 
together in the syringe was an inexplicable but efficacious way to keep a 
site functioning longer than 48 hours.....others needed to go back to 
5)straight Velosulin...in our case, Melissa failed twice on Humalog with bgs 
soaring into the 300s at 3 am, before finally figuring out on the 3rd try 
that she digests so slowly that she needs to bolus AFTER she's 
eaten.....Melissa's not doing any sports now, but when she was playing field 
hockey & was reluctant to "re-hook" on the hour as her CDE had advised, the 
6)consequence of having had her pump off for 3 hours was a recalcitrant bg in 
the high 300s for HOURS after the game that impeded her eating dinner, doing 
homework, etc..... Now, the IP group routinely recommends 7)to new parents 
that their kids re-hook hourly & bolus the missed basal depending on the 
degree of exercise....Still others learned that the 8)latent effects of 
exercise ( swim team) could make them go sky-high or come crashing down as 
much as 12 hours later ( or more!!).....9)cereal & pizza have been discussed 
repeatedly because almost everyone had a problem with these foods & had to 
find their own successful solution: for Melissa, the answer was to take the 
full bolus after the meal & then increase her basal by 50% for the next 4 
hours for pizza; whereas for cereal, she had to use a bolus ratio of 1:7 
which is the lowest one she'd ever used- but it worked!......We also learned 
10)to NEVER bolus from the pump for an inexplicable bg over 350, but rather 
to use the insulin pen with an aggressive bolus to bring her back down  just 
in case it was a problem with the pump or the set....we also learned that 
11)if ever she's over 350, she needs to drink a lot and take about 50% more 
of a bolus than you'd expect to bring her down due to a whole rash of reasons 
why the body "digs in" & refuses to drop from those stubborn highs as 
explained on the list by one of the well-informed CDEs....and speaking of 
CDEs, 12)not to malign yours at all, but I've read some pretty strange things 
on the IP group from CDEs whose pump approach needed "fine-tuning"......and 
also from 13)doctors who prescribed the pump, but didn't aggressively 
follow-up with the learning curve period adjustments...One mom I met in 
person was dismayed that her son's bgs were still mediocre, but then told us 
he'd been on one unit her hour as his sole basal since starting the 
pump!...she'd never heard of 14)"basal fasts" which are the ONLY way to 
effectively establish the rates, and even then with teenaged girls especially 
& hormonal interference, need periodic revisions....
    Anyway, please share this with ....X.... so that she will KNOW that she 
had an UNUSUAL initiation to pump therapy & that hopefully sometime in the 
future, she'll reconsider it & have a much smoother adjustment. If much of 
what I related above is "foreign" to both of you, then please tell her for me 
that it's as if you'd just received some fancy TV/VCR/DVD combo & were 
expected to know how to work everything without any instruction booklet!....
Regards, Renee ( Melissa's pump-mom)   

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