So to catch you up. IVIG was denied. The appeal was denied. So we are still in limbo.
I pretty much spent the last two months working on the appeal to send to an external review.
I spent so much time writing the appeal that I pretty much neglected everything else in my life.
That was really our only option left. In the end, we decided to just start over. His doctor sent in a brand new order with a different dosage that is more optimal to his current weight.
So a new order was sent. An low and behold! It was approved! There was some back and forth because I initially got a denial letter but then an approval letter. I still don’t know what happened there but when I called the insurance company to ask about it, she said that there was likely missing information that the doctor’s office just needed to provide before it could get approved.
However, mistakes happen. I just knew that there was going to be a bump. Not sure if this is a bump or a hurdle or a mountain…
The approval was for a dosage that was only 6% of the required dose. Umm…
Considering that the cost of the needed dose is over 20K, this is an issue.
Houston, we have a problem.
Emails were sent to the doctor’s office. Just a return email saying it was forwarded. So, we wait longer.
I’m tired of waiting.
PANS is a disease that is slowly robbing my son of his time.
Time to finish school, time making friends, time learning about the world.
When I was his age, I was over halfway through college. I had so many experiences that he has yet to have.
All I want is for him is to have the chance to be independent and happy.
PANS has taken that from him.
The mountain to climb to get treatment ordered and paid for has continued to hold the future hostage.
So a couple of bright spots this week.
My son actually asked me to watch a movie with him?!? What???
I ask him several times a month, probably for the past several years if he wants to watch a movie, play a game, go on a walk, go do SOMETHING with his mom.
The answer is ALWAYS no.
Maybe this week I’m cooler? Ha! Doubt it.
But we watched a movie of his choice that he thought I would like. What did we watch?
Whiplash. It was pretty interesting. Some colorful language, some blood (but not really much), lots of yelling, and some throwing things across the room. You know, the kind of movie that every mom wants to watch.
But interestingly enough, it had some great plot twists and surprises. And then at the end, I felt let down. You know how some endings you are like, huh. That’s it?
My son looked at me and said, “Do you get it?”
I, of course, said, “Get what?”
So he had to explain it to me.
And then I got it! Oh, it was genius. And to think I almost missed it!
So, I’m not going to tell you anything about the ending. I wouldn’t want to spoil it for you.
But warning. If you are my age, you may need a 20-year-old to explain some things…
So, doctor appointment in one week. Maybe we will have a plan.
But I am really happy that my son who makes a point to stay far away, in his room 24/7, decided he wanted to spend just a little time watching a movie with his clueless mom.
It’s what I live for 😉
