We met with Neurology today. I was prepared to be an aggressive advocate for Maddi. I was worried that they would see all her wonderful progress, and dismiss the regressive behavior we had been seeing for the last couple of days. The regressive behavior was the most concerning to me. In everything I’ve read, all the case studies and medical journals, regression means the treatment isn’t working!

I reached out to a support group on Facebook for feedback. How many rounds of treatment did your kid get? When did you know it was time? Most parents were helpful, and told me their stories.

“My son Has been fighting this for over 2 1/2 years.”

“10 rounds of Plasmapheresis , 2 rounds of Rituximab, and steroids for a month…..” 

“My son was hospitalized for a month before we got a diagnosis. By that time his mind was gone. We almost lost him.”

I realized just how blessed we were.

How blessed Maddi was.

She could have gotten so much worse.

We could be without her today.

I am thankful, that through this all, we have been able to identify a diagnosis. That she is receiving treatment and being closely watched. No longer do we sit in the darkness of unknown, riddled with fear.  Although we still live with fear, its different. I feel like we have a trajectory, even if we don’t know explicitly what it is.

We can only go forward from here, right?

We met with the Neurologist, Dr. K, and filled him in on Maddi’s progress over the last couple of weeks. He agreed, that Maddi would need additional treatments. The Risperdal, although helpful at this point, was only treating the symptoms of the AE. Eventually Maddi would reach a point where she was tolerant, and the only option would be to increase the Risperdal; which she would eventually become tolerant of as well. Dr. K said it sounded as if Maddi was already becoming tolerant of the dosage she was on, and increasing it would only cause her to become more sleepy. Alternately, we could try heavier anti-psychotics…but she’s five. So, that’s not really an option for me.

Dr. K agreed that a second round of IVIG would be the best course of action for Maddi right now. We’d admit her to the hospital, so we could also begin her steroid taper. Outpatient could take some time to get approval for, and a bed, and time is of the essence with this diagnosis.

We left with a game plan to readmit to the hospital in the next few days to begin a second round, but once I got to the Lobby, Dr. K had called to tell me that after conferring with his colleagues and an Immunologist, they felt the best course of action would be to start Rituximab.

Rituximab is a drug used in the treatment of cancer.

It is an immunosuppressant, that will destroy her overactive immune system, and prevent it from attacking her brain.

The idea of putting her on drugs used for Cancer treatment, is very scary and very unnerving, especially when the side effects are potentially fatal.

I’m still processing how I feel about this. So far, I’m thankful our treatment team is willing to be aggressive. That makes me feel hopeful that Maddi will make a full recovery. I’m thankful we have options and access to resources. I’m scared that Maddi could get worse.

For now, I’m going to try and focus on all the positives, and relinquish my anxiety over the situation.

The truth is?

I have zero control over this.

I have no say in the ultimate outcome.

What will be, will be, and I have to learn now how to be OK with that.

God has got the wheel, and he is driving this boat. I need to be OK with that too.

So, I’ll say my mantra, and pray for a good day tomorrow.