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Monday, May 13, 2013

One size fits none




Dblog Week Day 1 - Share and Don't Share

Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one's daily life with diabetes? On the other hand, what do you hope they don't see?

I think we're pretty lucky with our endo. She knows that we understand and have a good grasp on what we're doing.  She lets us do our own thing, but is there for us when we have questions.  We've done some pretty unorthodox things in the past and she trusted us enough to let us go for it.  I can't even remember the last time I spoke to a CDE.

That being said, I remember back to when Elise was diagnosed, they told us to treat lows with 15g of carbs.  Not knowing any better, we went with it.  In a 12 month old, 15g of carbs can turn a 60 into a 460 in a hurry and we soon figured out our own "sliding scale" for corrections.

In our last appointment, the endo and I were going over Elise's school plan when we got to the section on hypoglycemia management.  She skipped over the 15g part, so I stopped her and let her know we don't treat that way. She paused, raised her eyebrows and asked, "really?" in disbelief.  I explained and we moved on.

Diabetes is not a one size fits all disease.  I think endos and CDEs get that to a point, but I wish they would get it a little better.  When your baby is diagnosed, it is NOT the same thing as a teenager being diagnosed, yet they treat it the same.  There are so many of the "rules" that we don't follow, but we have figured it out on our own by living with diabetes everyday, and we have earned the right to manage it in the way that works for us.

Like I said... we're lucky.  But I hear of so many other parents that get talked down to for not following the rules.  For doing things like checking their child's BG during the night.  Maybe if that endo had ever seen a 32 for no apparent reason at 2:00 am, they might change their thinking. 

We know our children, please trust us that we will do right by them.

8 comments:

  1. Brilliant. The "rules" are guidelines and should not be told to parents as though they are hard and fast. I wish the rule of 15 would go by the wayside with other "we know better now" outdated information.

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  2. Breaking the "rules" work because "one size fits none" :-)

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  3. I think that "rules" should be renamed as "starting points." Start here, and we'll see if this works for you. I know that is how I started with my basal rates on my pump and I wouldn't want it to happen any other way.

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  4. I never really thought about how important it is for them to understand that age can really matter with diabetes, especially in ones so little. Thanks so much for reminding ME of that too!!

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  5. Trail and error baby...that is how we have survived. We threw those "rules" out the window and thank goodness our new endo understands we know our little guy the best! xoxo

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  6. You're amazing. I know, that's what I always say but, you are.

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  7. so true! we are living this 24/7 and know a hell of a lot and deserve to be listened to and trusted!

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