Chapter 6 ~ Toxic...

Over the course if the next several weeks, I will be publishing my story, as wife, mother, sister and daughter. This is the evolution of how a little girl can change the course of her mother's story, can change the course of her heart. If your new to this blog, please begin here. 

Courtney and Jonathan ~ Summer 1993

Chapter 6 ~ Toxic

Time flew by with one month bleeding into another. Keeping up with an active three year old was hard enough, add in my depression and trying to keep on top of all the details pertaining to Courtney’s care and that led me straight to the kitchen, dealing with my emotions with food.

I baked all the time. It distracted me from the reality of my life.

I was hanging on to my faith by a thread. I knew there was a God but I was totally vested in His wrath, not his love. I still went to church because that's what I was taught to do and there was no way I was going to take on the anger and disappointment of my own mother while I was trying to fix my kid. I was empty sitting there each week going through the motions. I was so tired of people telling me how strong I was.

Strong? No, you mean my daughter. She was the strong one. Me? I am pissed!

The only time I prayed was when a seizure would come and my daughter would struggle, gasping for breath, trying to overcome the electrical storm in her brain. I prayed for Courtney, not me. I knew what God thought of me.

I hadn’t accepted this situation at all. I still needed to fix my daughter. That pursuit consumed me.

We talked with expert after expert, all over the country. A week didn’t go by when I wasn’t mailing her medical records to some neurologist at Duke, Philadelphia Children’s Hospital, Stanford, UCLA, the Mayo Clinic in Minnesota, Children's Hospital in Texas.

If there was a doctor willing to take a look, I would send them. We changed meds from Phenobarbitol to Tegretol to Klonapin to see if we could get better control of the seizures. She was having three to four a day lasting three to five minutes each. It was hell to watch her work for every breath while her body betrayed her, convulsing and pulsating.

Courtney was having EEG’s every two weeks. They showed seizure activity, but with no focal point. Everything was still developing “normally”.  I have no idea what the doctors considered normal.

In May of 1993 we thought we had a breakthrough. Dr. M, the chief neurologist at Behtesda, called us in to discuss the latest EEG results. She had found an irregularity called “hypsarrhythmia”. This is directly linked to Infantile Spasms or West Syndrome, a very serious epilepsy condition confined to infants. It usually presents from 2 mos to 18 months of age.

Courtney was now nine months old.

Yes, finally an answer.

Dr. M did another EEG and it showed up again. Now we were getting somewhere. So we sought out treatment options and arrived at ACTH or Adrenocorticotropic hormone. After speaking with two other families that Dr. M put us in contact with about the side effects and results they had experienced, we were ready to go forward with the treatment.

I would have to learn how to give an injection to Courtney once a day in her thigh. We would gradually increase the dosage of the ACTH over the course of several days to reach the desired level. She would be watched closely for high blood pressure, changes in behavior and several other side effects.

Jerry and I had prayed about this, actually prayed together for the first time since this nightmare began. I couldn't go to God for myself but I could beg Him to show kindness to my daughter. We were convinced He was finally revealing what was wrong and where to find the solution.

I took pictures the morning we began the treatment. Courtney was smiling and laughing for the camera.

The last photo we have where we knew Miss Courtney saw us.
She's laughing at her big brother goofing around.
She was developing normally, although we were about a month behind the curve. Still she was hitting her marks. We had hope for the first time. I remember putting her in her car seat to head to Bethesda, holding her little bear, smiling and gurgling.

It would be the last time my daughter saw my face.

Within 48 hours of starting this treatment, we knew something was terribly wrong.

All Courtney did was fuss and cry. I had difficulty comforting her. She wouldn’t eat, she swelled up like a blowfish and her skin took on a molty red color. This was not supposed to happen. She stopped sitting up and all she would do was lay on her blanket and cry. Every time I moved her she would wince in pain.

Then the seizures started and wouldn't stop.

We rushed her to the ER and they called the Neurologist. They took one look at her and went into duck and cover mode.

"She was getting toxic" they said.

"Steroids are tricky things."

"You can’t just stop them cold."

She was having an adverse reaction to the ACTH. She couldn't handle the high level of steroids.

The treatment had failed.

Over the next few days we weaned her off as gently as was medically prudent.

They did another EEG and the hypsarrhythmia was not present. That was the good news.

But we thought they were the reason for the seizures.

It never showed up again on her EEG but the seizures continued day in and day out. The Doc had gotten it wrong. We had gotten it wrong.

We were crushed.

The ACTH stole everything she had. She lost every skill she had developed including holding her bottle. She just laid there and cried, had another seizure then slept. That was her life day in and day out for many weeks to come.  It was tragic to watch her suffer so.

Miss Courtney with her big brother two weeks after stopping the ACTH.
She would suffer the affects for months to come...
In the months ahead we would learn that she was “cortically blind” meaning her eyes worked normally but there was permanent damage to the cortical nerve that connected her brain to her eye, caused directly from the swelling during the ACTH treatment.  All she could see were "shadows". Her body remained swollen for several months after taking the meds.

What had we done to our daughter? How terrifying for her to have sight one moment and nothing the next. We had done this. Jerry and I chose to give her these meds. If we hadn't she would be fine.

We had messed up again...and Courtney paid the price for our decisions.

Couldn't I do anything right? Anything? 

**if you would like to read here...thank you**

Copyright 2011 ~ Mary E. Lenaburg

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