The Beast.

Monday, January 6, 2014 was a day we had been waiting for.

We met “Dr. B.”

In early November 2013, soon after Lukah’s POTS diagnosis was made by a cardiologist at Lurie Children’s hospital in Chicago, I decided to take her to a neurologist, too.  I did this because I believe both types of doctors will play a huge role on Lukah’s Dysautonomia treatment team.

But, I didn’t want to see just any neurologist.  I wanted one well-versed in autonomic disorders.

Too many doctors around here in Central, IL., know NOTHING about autonomic disorders, and I was sick of wasted appointments with no results.

So,  I dove into researching who we needed to see.

 For me, distance was not much of an obstacle — I just preferred it to be in the Midwest if at all possible.  Afterall, we have already spent a week in St. Louis Children’s hospital and also had a week-long trip to Mayo Clinic in Minnesota under our belts.  What’s another trip if it includes answers?

So I asked my virtual friends on my POTS mom facebook group.  Those mom’s never fail me.  Like us, those folks have been through the ringer with their children’s illnesses.  They know what works, what doesn’t, who’s a good doctor and who is a waste of time.

During the “conversation” on the forum, a husband and wife team of neurologists from Milwaukee came up.  They were described as “mad scientists” who will keep going and going and trying  for answers.  I liked that approach and was just about to call to make an appointment when someone posted recommending we try to see  “Dr. B.”  He had recently relocated from working with the Milwaukee “mad scientists” to Rush University Medical Center in Chicago (only two and a half hours away from us instead of 4).  Recommendations for “Dr. B” kept pouring in, so I called to make the appointment.

We had to wait two months.

January 6th came as did the snowstorm and subzero temperatures, and  I questioned if we should make the trip.

I decided to try it.

We made it.  And I am glad that we did.

“Dr. B” was wonderful.  He talked . . . and listened.  We were with him for about 45 minutes.

I’m not going to get into a lot of what he told us in this post, as I am not ready to do so yet, but I do want to talk about one thing today:  what he said about her seizures.

Dr. B is worried about them.  He says seizures are rare in dyautonomia/pots.  He explained that he  knows Lukah has been hooked up to inpatient video EEG two times already this year, so he doesn’t want to go that route again, but he is worried that her seizures are not registering because they are too deep in her brain to show up on an EEG because the wires are on the SURFACE of her scalp.  If the seizures stem from deep within the brain, they will not register on the typical EEG or video EEG.

Here’s a picture of Lukah at St. Louis Children’s hospital, hooked up to her video EEG equipment

Dr. B decided to start Lukah on a new seizure medicine, and I am glad.  She has not been on a seizure medication since April, because when her seizures did not register on the video EEG in St. Louis, they yanked her off of the seizure medicine.

Corey and I have never felt like seizure meds were given enough time to work, or that perhaps a different seizure med could be the answer, because we had only tried one kind.

It’s too soon to tell if the new meds are working, and unfortunately, she had a seizure again last night and again this morning.

As usual, they weigh heavy on my heart.

Long ago, I named her seizures “The Beast.”  Now that  Dr. B is looking at epilepsy again, I recalled a poem I wrote when all of this started last Spring entitled “The Beast.”  Here it is:

The Beast

I knew it the first day– it was like women’s intuition. I realized what it was well before we saw any medical clinician.

She was only eight, in a grade known as “the third,” A mere baby when her first episode occurred.

She fell to the ground and shook and her name she could not hear,

Even though I yelled time and time again, “Lukah wake up! Lukah my dear!”

It seemed like an eternity, and I was on a mission; as I dialed the phone to her long-time pediatrician.

“Do I call an ambulance?”  I ask.  “No,” she said. “I’ll see her right away.” I won’t ever forget her appointment that day.  

“This is your freebie,” the doctor said with a pause.  “If it happens again we will test to find the cause.”

I knew right then it was no fainting spell, you see; I knew in that moment it was EPILEPSY.

Round and round we went with specialist after specialist. And every time, the true diagnosis was dismissed.

“Drink more water. . . get more sleep,” We would  shake our heads, sigh and climb back into the Jeep.

“This can’t keep happening,” I would say. It seemed like with each different doctor, she was being  cast away. 

Years went by, the episodes few and far between. Until one evening when she was 14.

Back with a vengeance the beast returned; Several spells in one week—we were very concerned.

A new doctor saw her right away;   And diagnosed her with epilepsy on that very same day.

It’s not something, as a parent, you ever want to hear. It’s a heavy diagnosis – I still want it to disappear.

Yet I had known long ago that epilepsy was the beast we were about to face, In the life of our daughter, Miss Lukah Rose Case.

While I had known it since the first time, it’s still hard to endure. For with this horrific disease, you see, there is no “cure.”

Medicine may help but it takes a while, Until then, you hope no one notices the constant worry behind your smile.

Each day I wonder, “Will it happen again or tonight will she be free? To live the life of a normal teenager –wistful and full of glee?”

It’s hard not to smother . . . not to overprotect; While we wait and wait for the medication to take effect.

Even if it helps, I still wonder in the back of my mind, “Is the dosage right or will it happen again?  And if does, what kind?

Atonic, complex partial or myoclonic? And, oh God, will they continue to be chronic?

Will the effects be minimal and she’ll be back fast?  Or will it steal her for so long that several hours will have passed?”

The unknown is the scariest part, yet she is as brave as can be. Her motto is, “I may have epilepsy, but epilepsy does not have me.”

Perhaps, I’ll adopt that positive motto one day, Until then, though, I shall pray: “

Dear God, please keep my baby safe and out of harm’s way, as she enters each moment of every single day.”

And if it becomes her time to fall, Please guide her to safety through her grand mal. 

Please give her strength to endure the unknown, Especially, at least, until she is fully grown.

Please protect her from those that are mean, And, I also pray that she not pass on this horrific gene.

I ask that you help me be strong, And selfishly, I still pray that you will make their diagnosis wrong. 

But most of all, I pray for peace, for all of those suffering from this beast, may their seizures completely cease.”

—  Andi Case, March 28, 2013

 Today I pray for those suffering from “The Beast.” 

God bless them.