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[IP] For parents -- caution -- it's long. :-)
I don't usually make posts anymore to the list, but I feel parents need to be
aware of a potential situation with their d kids. I apologize in advance if
this is long.....
For those of you that don't know me, I have a daughter, Amy, with d. She just
had her 5th "anniversary" on the 9th of March, and has been pumping since
June of 1998. I am also one of the administrators of this list. Amy has been
a wonderful young lady -- always compliant with her diabetes, controlling it
and not letting it control her. She has been insistent that we allow her to
manage her diabetes for almost a year now, with only a little followup as we
see needed. She has been a wonderful public speaker in our area on the usage
of Insulin Pumps in kids -- she was the 1st and youngest in the Quad Cities
area to be pumping as "a kid". She is very active in sports - volleyball,
basketball, track and an elite traveling soccer team. She is a good student,
and really enjoying her 1st year of high school. Sound too good to be true??
Well it's not.......almost. Like every other young person with diabetes, this
disease has affected Amy's life. To what extent we just didn't really know.
Amy had her reg. scheduled endo appt. a few weeks ago. Nothing seemed amiss.
I had to get on her to get her records caught up like they should be (but
that's something normal at our house!!). We did the 1 1/2 hour drive to her
dr., did the weigh in, (lost 8 lbs), the urine tests (all fine) and the A1c.
When her dr. came in, she had one of the practices' new ped endo's with her.
She wanted him to meet Amy, who she always calls her "model patient". She
bragged her up one side and down the other, asked her every question about
her pump -- basal profile, insulin to carb ratio, how she corrects for highs
and lows, etc.-- and of course Amy could answer each one, without hesitation.
I of course was proud, the new Dr. was impressed, and all was right in the
world! Not!! Amy's A1c results came back a few moments later --
11.8!!!!!!!!!!!! I was shocked! Amy's A1c's usually are low 7's, and never
has been above 9.3(pre-pump). So, the Dr. started asking more questions --
was she having lots of highs, lots of lows, was she testing, forgetting to
bolus.........etc. She asked Amy if she brought her meter, which of course
she had, and went to download it to see just what could be the problem --
looking at Amy's records didn't give any clues, except she was once again
having some pretty good highs post track practice.
About 5 mins. later, she came back and said she has found the problem --- her
meter wouldn't download, so she didn't have a print-out, but we sat down
together and looked at her meter. She wasn't testing. I don't mean she wasn't
testing 8 times a day, but there were entire days, and even an entire week
that she didn't test a single time!!!! I was floored, and of course, in
tears. Her average bgs for the last 30 days was a whopping 348!!, and she had
more than a dozen tests that were so high, her meter would only say "high".
That explains the 8 lb weight loss!!
It took the entire day for me to get myself put back together and come up
with what I thought would be a plan to help Amy get back on track. No, we
didn't punish Amy for what she had done -- this disease is punishment
enough!! But, we have made some changes, that's for sure! Amy must once again
test in the presence of me or her dad -- she had been "testing" up in her
room, as that was where her bookbag was that contained her meter. She must do
all boluses and corrections in our presence. School doesn't count. She can
only use 1 meter, for both home and school -- no more using a different meter
at school that we can't see daily, although she still has her back-up meter
at school. All site changes must be done with a parent -- that explains the
whole "extra" box of cartridges we acquired, due to not changing the
cartridge each time. The worst part for her is probably the 30 day
"probation" we put her on -- absolutely no overnight activities until she
once again proves she is willing to be responsible when she away from home.
Now, some of you are probably thinking....."Wow, they've got one very unhappy
14 year old girl at their house that hates her parents right about now!". And
you know what?? You are wrong!! For the 1st time in weeks, once again I have
a happy 14 yr. old at my house! Why? I believe it's because she has the
weight of lying off her shoulders, and the responsibility of her diabetes
care. She is feeling 100% better than she did. And even though she is the one
who kept insisting she wanted to do it on her own, I think she now realizes
that although she is capable and knowledgeable enough to do it all, that it
is such a huge responsibility at that age. At any age! And yes, there have
been days of tears and yelling -- she had to miss the overnight cast party
for the school play she was in. But she is feeling freer now to express
herself about how much she hates diabetes -- something she had never, ever
said before now. She probably still does not realize, even though we've told
her, that the consequences of her actions may not be seen for years to come.
Who at 14 didn't feel invincible??
The reason I share this with you is to hopefully help someone avoid what we
have gone through. Trust your instincts. For those of you that know me, you
know I was not comfortable with letting Amy do it 100%, simply because she
will have to deal with this the rest of her life, and why not help her while
I can. I will listen to my instincts in the future. I will continue to help
Amy for all long as it takes to make sure she gets back on the right track
and stay there. I will continue to love her, and brag about the amazing
things she does in spite of her diabetes, and I will not ever take for
granted that she could be above the everyday hassle, discouragement,
embarrassment, and anger that can come with being a child with diabetes. I
have once again been given a slap in the face, a wake up call if you will,
that while I may be able to forget about diabetes for an instant, she cannot.
As long as she cannot, I will not again. I will not allow other areas of my
personal life to take precedence over Amy again. I will not assume that
diabetes must not affect her much since she doesn't say it does. As much as I
hate to say it, until there is a cure -- and there MUST be a cure -- I will
once again push that ugly d word to the front of my brain, dust off the
cobwebs it acquired from where I put it, and strive to make Amy's life the
best it can be! You parents all do so much for your kids -- you amaze and
inspire me. Keep doing what you do, and don't stop until we have a cure.
Ok, I'm jumping down from my soapbox now.....
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