Medical Issues, Opsoclonus Myoclonus Syndrome

New Day New Doctor Same Story

New Day New Doctor Same Story

New Day New Doctor Same Story
Photo by Karolina Grabowska on

After the events of Monday, Tuesday, and Wednesday, I get to gear up for the Thursday road trip to a town about an hour and a half away to meet a new doctor. Sadly, New Day New Doctor Same Story. This really just gets exhausting. Wasted time on my part and on the doctor’s part. Can anyone help? I don’t know. Seriously, I’m not feeling it.

The Drive

It was benign. My kid watched a movie and I listened to some praise and worship music. I prayed a lot about the situation going on with another. It was a nice quiet, easy trip. Once there, we realized we weren’t in Kansas anymore. The facility is a satellite facility for Vanderbilt.

Our previous doctor…well…we weren’t playing well in the sandbox together. I had had all I could stand of her niceties, not showing up, blowing me off, not returning calls/messages, and almost taking the life of my son with no regard. So, this was my last local-ish doctor to try.

Grilling 101

I’m pretty much over formalities so I tend to get to the point. So, this is how our convo went this afternoon.


Me: How many cases of opsoclonus myoclonus have you seen?

Dr.: I have personally seen 2 (not treated just seen).

Me: Out of those 2 cases, were they neuroblastoma related or non-neuroblastoma related?

Dr.: Neuroblastoma related.

Me: So you have never met and idiopathic opsoclonus myoclonus syndrome case who is medicinally resistant?

Dr: No. This is my first and I started to look at his file and there is a whole lot to read. It will take me a while to process it all.

My friends dub me as the “defeatist” because I get defeated easily and don’t really like to search. I do not do research or        dig too deep. I am an 8 to 5 general neurologist that likes cut/dry cases and I believe your son is not cut or dry.

Me: Indeed. Are you willing to put on your thinking cap and try to figure out other things we can try?

Dr: I don’t really have a network of people and I’m not sure I’m willing to do that but I can write scripts and letters as you              need them. I can also do workups every 3 months. I am happy to consult with someone with more experience.

Well Alrighty Then

I informed him that I could care less if he had a good bedside manner. He needs to be nice to my child, but I need honesty and willingness. I explained that to him, all my child was was a bunch of words in a chart. See this child for 20 minutes and then forget him again for three months. I told him that my child is a human that deserves to be more than a group of words. He deserves a future where he doesn’t have to struggle and compensate every single day of his life.

Needless to say, my child wasn’t even seen because I took up the time allotted for us. We do have another appointment scheduled where he will do an initial assessment. From there, we will schedule some scans that need to be done every year. He wants to uphold his oath of “do no harm.” I explained that simply driving down the road to the doctor affects him and triggers his PTSD. We have to move past that “do no harm” and get to the bottom of this.

It’s time and I will be heard.

Backing down is no longer an option.

Related Posts

Moebius Awareness Day

FDA Warning for Ethiopians