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[IP] Re:Children Pumpimg & add me venting!

Dear Susan,

Don't despair!!  I know how you feel.  We struggled getting an endo 
to approve a pump for Noah.  We actually changed endos to get it 
accomplished.  Noah was being seen at Hershey Medical Center (a 2.25 
hour drive for us) because we have no peds endos in our area.  They 
didn't have any kids on the pump and kept telling us they were in the 
process of getting a pump program and hang in there.  We waited more 
than six months and finally switched to an adult endo in our area. 
We were very insistent on wanting the pump.  I had found 
members.aol.com/CamelsRFun/ website and printed every testimonial on 
pumps along with research data (I think from same website) on 
comparisons of pump therapy vs. MDI which showed less hospital visits 
and stays, less long term complications, etc. in the pumper group. 
(This is especially important info for insurance companies since it 
shows less $$$ being spent in long run due to less complications, 
hospitalizations, etc.) It showed, too, that we had done our homework 
and knew a lot about the pump benefits.  How could he possible argue 
with statistics? Fortunately, he had many adults in his practice 
using the pump and didn't object.  We then battled our insurance 
company for months until they finally conceded.  Everyone, please 
know that unless your policy absolutely states that pumps are 
excluded, ALL insurance companies must cover them.  You may have to 
face many denials and appeals, but in the end they will come around. 
We also got a diabetes advocate to help our cause with the insurance 
company.  The insurance company knew they were going to lose but kept 
denying us time and time again until it came down to a hearing at the 
state level.  They finally gave in the night before the hearing!  How 
could they win?  We have the RIGHT to choose what we feel is the best 
medical care available.  It is a proven method, not experimental or 
illegal or whatever.  Sorry to go on and on about this, it just 
really makes me angry every time I think about it!  Grrrrrrrr!!!

Does your endo practice have any children on the pump?  Sometimes it 
is just a matter of them not being informed enough on the use of 
pumps.  It would be nice if that is the reason (or whatever it is) 
that they would tell you, rather than keep putting you off.  Maybe 
put them on the spot.  Arm yourself with research info and printed 
materials next appointment.  Encourage them to visit the insulin 
pumper sites on the internet and find out for themselves how the 
quality of life has improved for children pumping.

By the way, we have gone back to Hershey Medical Center.  They now 
have a few children pumping, Noah being one.  For them, it was a 
matter of not having the experience and knowledge of children using 
pumps.  They were very up front about that.  We just got tired of 
waiting for them to feel comfortable enough to try it.  We've always 
like the docs and nurses and are glad to be back.  I appreciated 
their honesty, too, in telling us the reason for delaying Noah 
getting a pump.  Maybe if your endo isn't comfortable with pumping, 
you could look into switching to one that has patients (adults or 
children) pumping.  You can always switch back if unsatisfied.  I 
think a big reason docs drag their feet is they simply haven't kept 
up with medical advances and feel uncomfortable with pumping.  There 
simply isn't any good reason not to allow children to pump.
Hang in there!  I know how frustrated you are.  We were where you are 
a year ago.  I hope things improve for Cory, with or without the 
pump.  I'll be thinking of you.

P.S.  The constant yo-yoing of numbers, and night time lows were a 
big problem for Noah pre-pump.  These happen occasionally pumping but 
not nearly as often or as severe.

Again, best of luck.

Cindy, mom to 13 y/o Noah, dx at age 9, pumping since 7/99

><< I would think Cory at 10 would be old enough not to
> accidentally bolus.  >>
>Cindy, I think Cory is old enough to handle this too.  He has always drawn up
>his own insulin and does a fine job and this electonic method seems to be a
>much easier and more accurate method of getting the correct amount of
>Today is not a good day though.  I talked with the nurse practioner about his
>daily highs before dinner.  Once again they want me to keep a 3 day reading
>and send it in.  I have done that over and over and over and over and over
>and over!   I am just sitting here crying.  Why does this child have to
>struggle continually if the pump would give him more even numbers.  Why does
>he have to be high all afternoon -- then crash after dinner -- only to spike
>again after bedtime snack and then be low again by 3 or 4 am.  I am just so
>sick of this.  If there is a better treatment method, why can't he have it?
>What would be the reason for denying or stalling a pump?  If things don't get
>straightened up in the next month or so, I think I am going to leave the
>state and go someplace where they believe in giving a child the best control
>that is available on the market today!  Why should he be miserable now and
>run all the risks that are associated with the long term effects of having
>diabetes if it can be avoided?  Why? Why? Why?  How did everyone else get a
>pump?  Why do some endos give them right away and others don't?  He is on 3
>shots a day (sometimes more) and follows his diet, exercies daily and still
>yo -yo's like crazy!  I'm sorry but I just feel so utterly helpless.  We have
>struggled so hard to have good control and our efforts seem so useless.
>Grand-mom to Cory
>age 10 ~ dx'd 12/28/98

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