Tuesday, January 17, 2012

T1 Tuesdays: Dexcom Dilemma and a Celiac Screen

At the outset I need to be honest and say that this will probably be a long post.
Can you bear with me?
I promise to try to give you the Reader's Digest version.
Grab a cup of coffee.
Ready?

Okay.
I certainly don't want to sound like I'm complaining here.
But I do feel that it's important in this venue with the audience I have to be honest.
It's really hard raising a child.
It's really, really hard raising a child with Type 1 Diabetes.
They go through so much, become so resilient that they are your heroes!
You want the very best for them because it's ultimately impacting their health decades from now.
I want to chronicle this journey of living with this disease so my daughter has a record of it,
and to encourage others who may have just received this diagnosis for their child.....
or even my own children who may one day raise a Type 1 Diabetic.

With all that being said.....here's what happened last week.
Back in June of 2011, our insurance changed.
With it came a brand new deductible of $2000 for each person in our family,
along with our prescriptions quadrupling in cost.
Yes.....QUADRUPLING!

In July, Ashlyn went to summer church camp without a parent along.
I was nervous about this because of all the variables that go along with
a Type 1 Diabetic during camp week.
She in fact had a frightening experience that nearly landed her in the ER,
and that basically resulted in a "chewing out" by our endocrinologist.
When she got home, I immediately researched continuous glucose monitors....
particularly the Dexcom 7.
I won't go in to the wonders of this device, but it is LIFE-SAVING.
Pure and simple.
It will alarm when your blood sugars go either too low or too high,
as well as giving you a continuous reading of your blood sugar every 5 minutes in graph form.
It's a miracle.
I wanted one for Ashlyn!!
But we couldn't get it.
Basically it revolved around that $2000 deductible.
You can read about that situation here.


BUT!!
After learning about all of this and knowing our situation, a family member very generously and very sacrificially and very joyfully gifted that money to us so we could get her into this amazing technology.

See pictures here.


We ended up with three months of sensors, and by the end of the 3 months we were
ready for a little break.
We loved this device, but we had yet a little bit of money to pay to reach our $2000 deductible,
so our sensors would cost us at least $280.
Once we reached that deductible, the rest of the 90 day supply would fall under the $75/month fee.
We didn't have that money on hand with the holidays coming up and our flexible medical account being nearly drained for the year.
So I decided that we would figure into our Medical Flexible Spending Account for 2012 the extra money we needed to cover the remaining amount for the deductible,
as well as a year's worth of paying the $75/month for these sensors.
Last week I called Dexcom to get the order going.


Imagine my horror.....the HORROR....
when the Dexcom representative called me and reported to me that our insurance deductible had
reset on January 1, 2012!!!
RESET!?!?!?!?
We have to pay yet another $2000 before we can get those sensors covered!

I about passed out...right then and there.
I could. NOT. believe what I was hearing.
How could this happen??
Why wasn't I told that deductible's run calendar year to calendar year?!?!

Apparently everyone else in the world knows this......
WHY didn't ANYONE mention it to me before now?!?!

Well, that was it.
I told the representative that there was no point in wasting her time any further.
We simply can't afford that.
If we don't pay the deductible....it's $280.
Basically a car payment.
And for the record......we don't carry car payments!!!

So there you have it.....we can't use this anymore.
I tried calling the insurance to see what I needed to do to appeal this.
She told me not to bother.
Appeals only apply to claims that would be denied for some reason.
Our claim for the Dexcom IS covered.......AFTER we pay the deductible.

I tried callling Dexcom to see if they could help.
Nope.
Don't have anything in place to help with hardships or anything because they are a non-profit company that's not big enough to offer assistance in any way.

I tried Medicaid several months ago.
Don't go there with me.
Let me just say it was a nightmare and we ended up getting shuffled over to CHIP {with real cards and everything} which we can't use anyway because we already have private insurance.

I've tried all the other places on line I've been pointed to and we fall into all the loopholes.....
we make too much income {just barely over the maximum allowed for this month},
or we have private insurance.

But you know what?
When I made that last call to the Dexcom company, and I got a disappointing answer....I just had peace.

Like the door closed....I don't have to fight this anymore....I'm done spending hours on the phone and internet.....that's just it.
God has a plan here.
There is a purpose for this.

Yesterday was Ashlyn's quarterly visit with her endocrinologist.
I was dreading it like a parent who knows their child is struggling in school,
and is headed to a parent-teacher conference.
I just knew we would have to talk about a bad grade {i.e. A1c}.
And I was right.
Ashlyn's A1c is at an all-time high now of 8.9%.

We were just getting it down from 8.5% to 8.3% with the Dexcom  {sigh}.
Now with December and it's craziness and letting routines slide....
we've lost control.
It doesn't matter what we do or don't eat or how much we check or how much insulin she gets.....
she's always high.
Way high.
She's currently taking 18 units of Lantus in the morning as well as at bedtime {36 units total}.
Her carb ratios are 1:5 breakfast, 1:4 lunch, and 1:3 dinner.
Our endo. was very gracious with us, but obviously concerned about why her numbers are so consistently high as well as having no real pattern to them.
It's hard to adjust insulin levels when there's no trend.
So we have to climb back into the prison of set carb amounts for each meal (tighter carb control),
and he wants her to be screened for Celiac disease.
I was a little surprised that he mentioned that since she has no symptoms at all.
He said that sometime Celiac shows up because their blood glucose levels get all wacky even with lots of insulin and could be the underlying cause.
He mentioned insulin resistance, but wants to pinpoint why right now.

Sometimes it's easy to post about bright and sunny things.
Some days, I just have to lay it out as it is.
I'm just so thankful to know Who is in control here.
I'm relying on this verse of scripture that I've chosen for Ashlyn as the verse I pray for her:

"For I know the thoughts that I think toward you,
saith the Lord,
thoughts of peace,
and not of evil,
to give you an expected end."
Jeremiah 29:11

2 comments:

Anonymous said...

You are one fantastic Mom! The care you have for your kids, the lengths you go for them...truly inspiring! I hope these new tests give you some good answers and a good direction to go. God is holding your family in His hands and people are praying for you!

"I had fainted, unless I had believed to see the goodness of the Lord in the land of the living. Wait on the Lord: be of good courage, and he shall strengthen thine heart: wait, I say, on the Lord." Psalm 27 13-14

Brenda said...

Thank you so much for sharing your kind thoughts. One of my very favorite verses that always encourages during times of disappointment and struggle!!