THE FIRST TIME WE HEARD OF PUMP THERAPY
The first time Alex and I heard of pumping, we were standing in line
at Walmart Pharmacy waiting for Rx refills. The lady behind us heard
what we were ordering and began telling us all about her pump. She
went on and on about how is was the greatest thing since sliced bread.
Alex was interested and said mom that sounds cool! So off I went
on my search to learn as much about this pump thing as I could.
WHEN WE DECIDED PUMPING WOULD BE THE BEST THING FOR ALEX.
We mentioned the pump at our next appt. with the Pediatric Endocrinologist.
He said that Alex was too young for pump therapy and did not consider
patients until they were 15-16. So I set thoughts of pumping aside while still
listening and learning all I could online. 2 years had passed and each time we
mentioned the pump we got the same reaction from the Dr. In January of 1999
Alex's bgls were swinging from 25-600, it was time for a change. This time
I was a little more aggressive about the pump. His reasons for not considering
Alex yet were: Psychological damage of having something attached to him(bull-pucky), DKA complications,
and that Alex would become more dependant on me at a time when he should be
becoming less dependant. All of these were just smoke screens. He did switch Alex to
Ultralente/Humalog combination and this helped stop the swinging bgls but,
I knew it was not the answer.
SWITCHING DOCTORS
So I started interviewing Ped.Endo's. Talked to a
couple of real winners in Chicago, none of who supported pump therapy in younger
children. Finally, I reached Riley's Childrens Hospital in Indianapolis. After talking
with Tina Pottorff(now our favorite nurse) extensively about their beliefs on
pump therapy, I decided that Riley's(even though it is a 2 1/2 hour drive) was the place for us. They were open to
younger kids on the pump. Their standard age was 12 but were willing to consider
other candidates, that's all I was asking for, consideration. So we had our first appt.
at Riley's in April 1999 with Dr. Sanchez. Finally, I found a Dr. and team that Alex and
I could feel apart of. We all work together to manage this disease. I can't believe
it took us so long to realize there were better Dr.s and teams out there.
PUMP START-UP
At the beginning of July, Alex and I were scheduled for
a trial pump. We both wore the pump(i wanted to see what it
would be like for him) for 3 days with saline. Everything went
very smoothly, he couldn't wait to start for real. We were already
keeping the detailed records necessary for the pump, which we had to
fax in before pump start. On August 4th we drove to Indianapolis for the
initial start-up. There were 2 other children starting that day also.
Alex was so excited he wanted to insert the set first thing! But we
had some training to go through first. Finally, we got to the
insertion, Alex had no problem here, put it right in with the
softserter. We had lunch and monitored, then back for more training.
By dinner time we were on our own! Well not entirely on our own, we have
our team behind us. We emailed bgls/food records in daily for the first few days
trying to set basal rates. Now It is down to twice/week and we are getting closer
to the perfect basals.
ALEX LOVES HIS PUMP
It is hard to describe the joy I feel each time Alex is able
to eat a Cookie Dough Blizzard or other treat with his friends.
Not that he couldn't do this before but, it is so easy now!
No getting the syringe out, no worrying about the time, no worrying
if he already had 2 other treats and they were working on a
third, just keep bolusing! Although he is not allowed to
do this everyday, he still must eat healthy, just like I require
my non-d child to eat.
TRIALS OF PUMPING
Although there are many advantages to the pump, sleeping in, eating whatever/whenever, no injections, etc...
But I feel I must also mention the disadvantages. Sometimes the
set is a challenge to keep on, we had tape problems in the
beginning but, i think we have them worked out now. Since there
is only Humalog(short acting) in the pump and no long acting,
it can be dangerous if something is wrong with the pump or set. His
bgls will go up quickly and can result in ketones and possibly DKA.
That is why there is a need for frequent testing, as long as you stay
on top of bgls and are good at problem solving the less likely DKA
will ever happen. Lastly, is being attached to something 24/7. Alex doesn't
mind this too much. But some things can cause problems like
trying on school clothes(i couldn't figure out what was taking him
so long in the dressing room). Although he has already adapted and
knows how to deal with this now(disconnecting for a few minutes would
have been ok). I am sure we will encounter more challenges along the
way but, they will all be worth it. Can't wait to see that first post-pump
A1C!
UPDATE NOVEMBER 3RD 1999
Alex's first A1C post pump is 7.2!!!!!!!!!!
The Dr. was very happy as were we. All the hard work an effort
were worth it. Pre-pump Alex's A1C usually ran around 8 with alot of
highs & lows. The only problem now is expecting those good numbers
all the time. We still have the occasional high/low although the
highs are now easily correctable with the pump and the lows are very
rare. Alex had the best Halloween ever! The weather was as wonderful
as his numbers! Even with all the candy and the exercise. He suspended
his pump while running(at full speed) from house to house, and bolused
for each piece of candy. Alex loves his pump! and so does Mom!
Pump Sites to Visit
FAQ about Pumps
Don't Be Afraid of Insulin Pump in Children
John Walsh's Pumping Insulin Book, a must have!
Minimed
Disetronic
Insulin Pumpers
KidsRPumping
