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[IP] Re:TJ's story for the kid's page

Dear Michael,
        Here is a story for the kid's page...Sorry that it's a bit long.
Let me know if you want me to shorten it.

                                              TJ's Pump Story
        TJ was diagnosed with type 1 diabetes at the age of three during
the last two weeks of August, 1993.  So instead of spending the end of our
summer vacation in Myrtle Beach, South Carolina, he ended up in the
hospital.  To further complicate things, he was also diagnosed with severe
asthma six months later!  Now on top of insulin injections, fingersticks ,a
restricted diet and schedule, we added nebulizer treatments and a peak-flow
meter! I was so overwhelmed with his care that I pulled him from his
nursery school class and my husband took two months off from work to care
for him..  He didn't return to school till the following September for
Pre-K.  Of course in time we all got used to the regimens necessary to care
for TJ.  It was very frustrating because the two conditions together
exacerbate each other.   It was very difficult to try to moderate TJ's
blood sugar levels. He could range from the 30's to the 500's on any given
day. Whenever he had to take prednisone for the asthma, things would get
even worse!  TJ's insulin needs would double while on that medication and
his blood sugars would still be high.  For the whole time on two shots a
day of four different insulins his hemoglobin A1C's were in the 10-11%
range.  Despite such a difficult regimen TJ hardly ever complained, he was
and is a very special brave boy.
        We were always aware that insulin pumps were available but had
little idea that young children were using them successfully.  We had
figured trying one when he reached his teenage years.  But during time on
the internet talking to other parents, I came to learn that kids TJ's age
were pumping with good results. I became interested because of the hope of
improved blood glucose control, a more flexible schedule and the idea that
it would be easier to manage his diabetes when he had to take Prednisone.
At first he did not express much interest, but after spending a week at the
Joslin diabetes camp in Massachusetts, he was. He had seen first hand, kids
using pumps.  At that point, I ordered the tapes and info from Minimed and
Diestronic and the family all watched them together.  TJ was still
interested so after talking to his endo it was agreed that we would all
have a trail period with a pump using a diluent(the stuff used to dilute
insulin).  It took a while to convince the endo that TJ was serious but he
did and at Christmas time we took home a Minimed pump for two weeks. I wore
it first, then my husband and finally TJ.  He definitely did not like
having the infusion set inserted but once it was in, he didn't seem to mind
it at all. He wore it for three days and said to go ahead and get him one.
In January, we put in an order for a "cool blue" Minimed.  The Minimed rep
was great and even helped the endo write the letter of medical necessity.
Because our insurance company is notoriously slow, we didn't have the
Minimed in our hands until March!
        TJ's start-up date was set up for April 6th at the endo's office.
This would be over his spring break and we hoped to have him pretty well
set by the time he had to return to school.  While our expectation was for
a smooth transition, it was not to be! First there was a big disagreement
with the endo on how to use the pump.  TJ was the first patient going on
the pump for this endo. The endo wanted to use Humalog in the pump because
it offered more precise control than regular but  also wanted a bedtime
shot of Ultralente for safety. There was a concern over avoiding
ketoacidosis in the event of pump failure or having the infusion set come
out.  TJ is a very active 8 year old.  While I was willing to give this
regimen a try, my husband could not reconcile himself to it. So, although
we spent a week on the pump with a shot of Ultralente, we changed to a
hospital clinic that had more experience with kids on pumps. (Although TJ
is their youngest pump patient!)  The insulin in the pump was changed that
day to Velosulin and the Ultralente was eliminated. The very next day TJ
came down with a high fever due to a sinus infection!  I have to admit that
while his numbers were not perfect they were better and it was definitely
easier to deal with illness on a pump.  After the antibiotics did their
job, we had a few days of  numbers in the mid 100's to low 200's which for
TJ, is great, but as soon as he returned to school, he caught a bad cold
which triggered the asthma to the point where prednisone was needed! Again
the pump made it easier to deal with the prednisone's effect on his
diabetes.  On top of all this, TJ was experiencing difficulties with the
softsets he was using!  We were getting lots of no delivery alarms and one
day, we had to change the set four times!  TJ was upset and so was I! I had
moments of questioning what we were doing.  No one really prepares you for
the flood of emotions that you experience....It was exactly like the time
when TJ was first diagnosed and I felt like a basket case. The round the
clock blood glucose testing added to my overall stress due to a lack of
sleep!  Eventually, we switched to using the silhouette infusion sets and
once TJ finished his course of Prednisone, his numbers settled down again
to more acceptable levels.  We still get an occasional no delivery alarm
but no where near the amount we had with the softsets. If your child is
lean, I would start them with the silhouette even though the insertion is
more difficult.  TJ uses Emla cream to numb the site but we have discovered
that an ice cube works almost as well.   He has gotten much better during
set changes, so much so, that he'll even allow a set change without
anything to numb his skin! His spunk amazes me. After one month of pumping,
TJ's A1C dropped from over ten percent to 9.7%, in spite of all the
problems.  Obviously we still have a long way to go, we are still working
on his insulin to carb ratios, but his basal rates seem to be working ok.
His blood sugar numbers are improving as we make small adjustments.
Overall, we are glad we stuck it out.  As TJ told his new endo, He likes
most things about the pump but not everything. ( He stated that he hates no
delivery alarms and is anxious for us to finalize his insulin to carb
ratios so he can relax his meal schedule.......right now he's still on on a
strict meal plan while we figure things out!)  So while the pump, was not
the easy, smooth answer to our prayers, it was/is an improvement that I
expect in time will get better and better. TJ still experiences some swings
low or high without a clear cause but not as many as on multiple
injections. He was always difficult to control.  We are looking forward to
the day when things are more settled and we can take advantage of some of
the perks that the pump offers like sleeping in late and not having to eat
on a schedule. I imagine that with summer approaching (usually a time free
of colds that aggravate the asthma!)  we will soon be at that point!
Debbie and Timmy, parents of TJ age 8

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