Welcome

I'm the mom of a beautiful Type 1 daughter and married to a wonderful husband who also has Type 1! This blog serves as a place for my thoughts and feelings, in the hopes that it will help other families struggling with the many challenges diabetes presents. I can't always promise it is uplifting...but, it is honest.

And, of course, it is by no means meant to offer medical advice.

Wednesday, August 29, 2012

The Greatest Fear

Jess and I have been working so hard on her diabetes these past few weeks.  It is an immense amount of work but she has rarely been over 200.  I have been thrilled...she has felt good...and I have just been hoping we can continue it so that her next Hemoglobin A1c kicks butt.

And, then tonight I checked Facebook.  A seven year old died in bed of hypoglycemia.

The "Dead in Bed" syndrome that every Type 1 parent I know fears.

This is the down side of good control.

What are we as parents to do?

If we don't aim for strict control we deliver our children to adulthood with years of the devastating effects of hyperglycemia.  Jess was diagnosed at seven.  By the time she is eighteen she will have had Type 1 long enough to have retinopathy and other complications starting.  She is too young to understand this in detail, and too young to fully manage her disease.

But, by working hard towards strict control, the risk increases that she will have a fatal low.

I don't know fear greater than putting a child to bed and praying they will be alive in the morning.  No matter how positive I remain it is always there.  Those first steps past her bedroom in the morning when I pause at the door to look for the rise and fall of her chest.

My heart absolutely aches for this family.

We need better technology.  The FDA must stop the slow approval of life saving devices.  We need the artificial pancreas with its auto shut off functions when a low blood sugar is detected.  We have been waiting on technology here in the United States that Europe has had for months.  It is inexcusable.

2 comments:

  1. It breaks my heart to know of these things.

    ReplyDelete
  2. Inexcusable.

    Yes...I want to scream out for SOMEONE TO DO SOMETHING!!

    ReplyDelete