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[IP] Re: Skylar's pump start

Hi Nuni & All,                                                                
                                                          Before I spoke to 
our endo I sent in the Dis. insurance forms.  Once that was all approved,  
Dis. did all the work really.  They called me several times saying that all 
they need is our endo's CMN (certificate of medical neccessity).  They even 
called him for me saying that they are ready to send it & just need his form. 
 I called him as well & basically told him that we have our heart set on it & 
to please not disappoint us!  I reminded him that Skylar's BS has been on a 
rollercoaster since  the beginning 3 1/2 yrs ago.  He said that we are due to 
see you in 3 weeks Jan 4 "Let's talk about it then."  SOOOO I had to wait it 
out over the holidays.    I was prepared to tell him that we will have no 
other alternative but to change endo's if he gave us a hard time.  This has 
been Skylar's endo since day 1 & he has always been very nice.  Well Skylar 
had a great A1C of 6.0  I was happy but told him that I really wasn't 
consoled to think that she was in good control.  Just look at her daily log 
books.  I also said that I know the pump ISN"T a cure & she will also have 
highs & lows but I had to see the difference it made!  He was VERY supportive 
& said that he will go ahead & send in the form.  He has about 40 pumpers but 
none under 9 or 10?  Not sure how old his youngest is.  Anyway I told him we 
will be happy to be guinea pigs for him & keep him updated almost daily as he 
had no experience with such a young pumper.  I couldn't believe how painless 
it was & was SO thankful that he didn't give us a hard time or that we didn't 
have to find a    new endo.  He had a few questions about diluting insulin & 
exercise adjustment of the basal rate & I told him that I will fwd letters 
from other parents of young pumpers to help answer those questions.  He knew 
that I have been on CWD & IP & was in touch with LOTS of other families who 
are pumping at Skylar's age & younger.  Anyway I sent him letters from kids 
that dilute as he wasn't sure how stable diluted Humulog was in the pump.   
We first used full strength the first day in the hospital & then switched to 
1/2 strength U-50 the next day & stayed an extra night to monitor the new 
doses.  Full strength H goes down to 1/10 of a unit & now we can go down 
to1/20th of a unit for more flexibility.  Sure can't do THAT with a syringe!  
   Really young D kids can benefit SO much with the smaller doses than just 
being stuck with 1/2 units increments unless they're diluting of course but 
there's still not alot of room for flexibility.   Anyway it has been 25 days 
since Skylar's last shot.  She has been running mostly high with a few lows, 
we are still adjusting her basal rates as needed.  We absolutely LOVE the way 
we can bolus anytime, anywhere with the push of a button.  Skylar really 
feels more a part of her daily care by being able to give herself insulin 
like that after I tell her the dose for what she just ate.  We love the 
flexibility of delaying or skipping meals & snacks or sleeping alittle later. 
 We are still trying to fine tune her doses for basal rates & insulin/carb 
ratio so we are still seeing alot of fluctuations.  But ultimately she should 
be able to skip a meal altogether without getting low.  It's amazing that 
some mornings she isn't eating breakfast until 10:00. It just makes so much 
more sense to bolus for what you eat rather than eat for what insulin you 
just gave.  As we all know how picky some kids can be especially after they 
got their shot!  Not to mention having U or N on board & then be informed 
that they're not hungry later.  Ugh,  I should have made a tape of "please 
eat or you'll get low"  or having to resort to juice or apple sauce to fill 
in the missing carbs.   Don't get me wrong, it's not perfect yet, but we sure 
like this way alot better!    I really can't understand why endo's like to 
say "let's wait until they're older or when they're more stable"   Parents 
are doing all the work for young D kids now anyway!  As far as being more 
stable BS's, there isn't a whole lot of room for flexibility with MDI's.  
It's the really young kids that can benefit now from the wider range of doses 
available with the pump. Not to mention, to bolus or not to bolus depending 
on their daily whims!  I think that most D kids would choose 1 shot (the 
infusion set)every 3 days, over 3-5 shots with a needle everyday!   Please 
don't give up.  I think that more & more endo's will see the benefits for 
younger kids through the experience of others that were willing to give it a 
try.  It's really not all or nothing,  you can choose to go back to MDI's!    
  The folks @ Dis. were wonderfully helpful like Tracey in the insurance 
dept.  Our Rep from NJ was also GREAT.  She even gave Skylar the Pump Girls 
CD, which we all really like.  It's wonderful the difference those 4 girls 
are making for D kids.   From all the posts I read I realize that it's not 
going to be as easy for everyone to get a pump for their child.  I personally 
feel that all the hurdles are totally unnecessary especially with the stress 
parents feel on a daily basis to begin with!    We are paying dr's salaries, 
they are working for us!   There are just too many young pumpers out there 
who are leading more normal lives for them to not notice that Pumping is 
being used successfully by D kids of ALL ages!                    The squeaky 
wheel gets the grease!  Will update you after our 3 week trip to visit family 
in Florida on 3/7.    Let me know how things go.  Stay well                   
          Robin & Skylar 5 dx'd @17mos. Pumping since 2-2-2000 
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