Tuesday, January 5, 2010

Frustration---Transition and What if She's Not Ready

One of my least favorite parts of being of living in the special needs world is always having to fight for things.

When she was tiny, most everything she needed was covered by some form of insurance, her Medicaid or her waiver. But the years have gone by and today it seems like everything she needs is a battle.

We couldn't have moved at a worse time..Becca was turning 17. We had moved to Michigan 10 years earlier. It was a challenge to reestablish care for the dozen or more specialists who followed Becca for a multitude of medical issues, but nothing compares to moving a complex 17 year old to a new place just when she is reaching the magic age of majority.

I am not a novice at special needs medical care 20 years of living with Becca and my other special kiddos, I am a master of RED Tape. These past 3 years of dealing with her special needs while at transition age has given me "fits". I can't believe how bad it is to navigate.

There is an awareness in the special needs medical world, that we need to do better. There are many more survivor kids who are now because of medical technology are reaching adulthood, and the medical world is now having to figure out how to handle them without them falling through the cracks.

Becca is unique, anyone who "see's" Becca knows that she is not yet physically an adult. Part of her Noonan Syndrome is that she has delayed maturation, not just socially and psychologically, but physicially. Part of Noonan Syndrome is that she has delayed puberty.
But insurance company says she is an adult. They see the magic age on her paper and judge accordingly.

Our insurance company says she is an adult, but the medical community says she still needs to be in pediatrics. Compound the fact our managed care provider has few pediatric doctors on its roles, I have to get approval to go out of network.

The insurance company says she needs to see their in network adult doctors. They say they can "manage" her care with their adult specialists. I have gone that route several times and found being told by one doctor "that I was wasting his time" as she is not someone he could manage. I had been told I had to go there and then faulted because we were in the wrong place. Another doctor treated her as an adult, mismanaging her medical care. Causing real harm that will last a lifetime because of missed opportunity.

I have been fighting for now nearly three years for Becca to get to pediatric endocrinology. I had one an appeal and got here there once, and we barely got started with the doctor when the insurance company wouldn't let us go back. She had been on growth hormone, not just for size, but to help with bone development. But now three years later she is still not on, we are still fighting for care with an endocrinologist.

Becca only began developing less than two years ago, her body is behind. We have been fighting the insurance company for endocrinology during the window where we still can make a difference for Becca long term.

Because of the insurance companies and the medical groups war with the competition (they do not want to send their money to their competitor) and Becca's paper age... she is going to face life-long repercussions. Bone loss...severe osteoporosis...brittle bones of a 80 year old at 20.

When Becca was seen by the Pediatric Cardiologist...he discovered by her chest x-ray her transparent thin bones. The family practice doctor sent her for a bone dexascan and when compared to the one from nearly three years ago, she has lost ground. Even with this knowledge the insurance company still "DENIED" her to go to the pediatric endocrine specialist after two appeals.

Yesterday I received a phone call from the nurse case manager at the Health Plan asking me if I appealed their decision. I hadn't...procrastination...the holidays...just not wanting to ruin my day...rehashing the mismanagement of Becca's transition medical care.

This person has been involved in Becca's medical fiasco's helping mitigate some of them and showing me how to manuveur through the managed care doors to "fix" system glitches that Becca seems to fall into everytime we need something. But she also had news to share... She is retiring. I spent three years advocating and training this person about Becca's complex needs, I get to start again.

She is leaving..Friday. I need to get the appeal in by tomorrow so she can make sure it gets attention. I had other plans, but dropped everything to get it done.

I copied both dexascans, copied the insurance company denials from over the past three years, I copied medical abstracts "proving that there is delayed maturation and puberty in Noonan syndrome" and the FDA approval from 2007 for growth hormone use in Noonan syndrome and why it is so important and wrote my appeal letter.

But even with that I knew the insurance company still did not see Becca. I attached two pictures of our Tiny Titan, one of her with her siblings, three inches below my daughter-in-laws chin and her tall brothers and one of her in her swimsuit and tank.

They say a picture is a thousand words...

Doctors appeals have been denied, they see Becca for her age not her development....

Maybe this will get their attention.


  1. This is one case where "age is nothing but a number".

    And bone age is a serious one as well.

    Sue Rubin has Noonan's. At the time I only knew that it made you short.


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