Sarah's Relapse

Sarah is having a relapse. Her vision is currently 20/200 in her left eye and 20/100 in her right eye. She is color blind in her right eye. There is a black spot in the center of her left eye which prevents her from seeing anything straight in front of her out of that eye.

Things are bad.

We are going to wait out the weekend to see how things go both because Sarah has asked us to and because Bob and I need to come up with a new game plan. The normal protocal of treating Sarah is no longer acceptable to us which is why we are not rushing to the hospital today and why we did not rush there yesterday either.

 Her current treatment DOES NOT work. This will be our 8th time on these damn steroids and each time her vision takes more time to recover, and what she does recover is less and less. As soon as she comes off of her steroid taper she relapses. Steroids come with a cost. They are not a free pass to better health. Her bones and organs cannot take repeated exposure to these types of drugs. I have said that before, and I tired of saying that. I want someone in the medical community to HEAR me.  I AM TIRED OF FEELING LIKE I AM SCREAMING FOR HELP FOR MY DAUGHTER AND NO MEDICAL PROFESSIONAL HEARS ME!!!  DO YOU HEAR ME, DOCTORS?!!!!! YOUR CURRENT TREATMENT PLAN FOR SARAH IS NOT WORKING!!!! IT HASN'T WORKED FOR 11 MONTHS! NO, I AM NOT GOING TO WAIT JUST A LITTLE BIT LONGER TO SEE IF THIS OR THAT WORKS. I HAVE BEEN WAITING FOR MONTHS AND MONTHS!!!! AND YOU KNOW WHAT ELSE, DOCTORS? I AM WOMAN - NO, I AM A MOTHER - ON THE VERGE OF FREAKING LOSING IT SO YOU BETTER WATCH OUT.

(Thank you for letting me freak out just above. I needed that.)

There is a treatment called plasmapheresis that I think Sarah could benefit from. It is used to treat both MS and NMO patients when steroids are not working. I have inquired about it several times to both the Akron Children's neurology team and the Cleveland Clinic neurologists to no avail. I seem to hit a brick wall anytime the treatment is mentioned. Guess, who is going to plow through that brick wall come Monday? This Mama - that's who. There is merit and value to this treatment method. If you are curious - look it up - it is all right there. I think that the biggest problem is that it is costly....I'll let you form your own opinions right there about why I have not been successful in getting Sarah this treatment.

I know in my gut that Sarah's current treatment is no longer the way to go. I know that sounds so ridiculous that a gut feeling has so much standing in my life, but I know no other way anymore. My intuition is all I have to stand on a lot of the time, and it hasn't failed me yet. It is the only thing that hasn't - doctors, medicines - all of the things that are supposed to work and are supposed to be fail safe - are not. They have both failed Sarah tremendously.

We are going to wait things out at home. It is her request, and as her parents it is our job to honor that. Plus, I agree with her decision with all of my being. She is a smart, brave girl. She knows what she needs. She knows that by staying home her vision may get worse before it gets better. She also knows that her current treatment plan of 3 days of IV steroids followed by a 2-3 week taper does not work.

I am frustrated. I am tired of feeling like no one has any idea how to treat my daughter. I am tired of feeling like a ping pong being passed back and forth between doctors. I am tired of feeling like it is me vs. the establishment. The medical / insurance company system that we have in this country is bullshit. And I wouldn't wish my journey or anything similar on my worst enemy.

Oh, and if you are wondering - yes, I am on the verge of a freaking breakdown. Have a nice day!