This is a follow-up to my blog called Not much patience . . .   Read on if you want to know what life is like when your child is first diagnosed with epilepsy.  In my previous post I described the initial days after my son had his first seizure.

As I indicated in my previous post, my son had a seizure and we were waiting for an appointment with a neurologist.  For the next three days we waited in suspense.  I didn’t go to work.  I didn’t go out and about.  We stayed close to home.  I just waited for our appointment on Friday, and watched my son hour after hour.  Within a day I saw that my son was having many bouts of eye blinking, lasting for as long as 20 minutes.  Once again these events were nothing like his first seizure and I could tell that they were different from regular eye blinking. The blink was faster and appeared more of a tug at the eyes.

Finally Friday came and we were off to the neurologist appointment.  As we sat in the waiting room for the neurologist, I was quickly enlightened about the many challenges that some children can face.  As we sat there we saw children with many brain-related disorders.  Some of the children looked like my son and appeared as if nothing was wrong with them.  On the other hand, there were children with greater challenges such as Down Syndrome.  There were children in wheel chairs, children with helmets, and basically children that had huge challenges in life.

The other thing I noticed as I sat there was the caretakers of these children.  Most were parents.  Some were paid caretakers.  The parents had this attentive look on their face, watching their child and diligently attending to all of their needs.  Their language was like any other language used when dealing with a child, whether the child had development delays or not.  Some of the children were teenagers, and some were newborn infants.  There were children who were White, children who were Black and children who were Hispanic.  It was obvious that no child was immune to these conditions.

I did not see anything that I hadn’t seen before, but I was hyper-sensitive as a sat in this waiting room with this concentrated focus on the children with brain disorders.  As I sat there it came to me that my child was one of those children.  I was one of those parents.  It also dawned on me that things could be worse, much worse.  That didn’t lighten the urgency in my mission, but it did make me somewhat thankful for our circumstances.

The other eye-opener was the actual waiting.  We were a family in crisis.  From my perspective we were in need of urgent help.  To me crisis and urgent implied immediate attention.  That was the feeling that was going on inside of me.  Then I compared that feeling to what I saw in the waiting room, and for the length of time we waited.  It was a paradox.  I wanted my son to get help right away.  This feeling of  urgency was aligned with the concept of being cured.  I know this sounds crazy and unrealistic, but that was what my initial feelings were toward this diagnosis of my son having a seizure.  I thought if I immediately addressed it, then he could be cured.  I know this doesn’t make sense, but I think it is a common reaction for any parent when they have a child that is sick.  Little did I know but this “waiting” aspect was going to become a normal part of our lives.

Finally my son’s name was called and after being weighed and having his height measured, we were led into an examination room.   I had the misconception that once you were in an examination room that the doctor would be in shortly.  Not the case here, it was another hour before the doctor came in.

The first thing we went over was to description of the seizure itself.  Looking back, I can’t tell you the number of times I had to describe the seizures.  A description had to be detailed each time we saw a new doctor, which over the years has been 7 different neurologists.  A description had to be given each time we had a short-term EEG, which has amounted to 5 or 6 more times.  Likewise, a description had to be given each time we had a long-term EEG, which has been 7 times in the last nine years.  And finally at the beginning of each school year, this description has been given to the school nurse.  It is very tiring and frustrating that you have to repeat this over and over again.  This is one aspect of improving our health care system that I look forward to.  Document it once.  Put it in a system that can be shared by everyone.

After going through this description process, the neurologist did some very basic neurological testing including the following six categories:

  1. Mental Status
  2. Cranial Nerve
  3. Motor
  4. Coordination and Gait
  5. Reflexes
  6. Sensory

These tests include:

  • Left to right symmetry
  • Field of vision
  • Pupil reactions
  • Facial movements
  • Tongue movements
  • Muscle tone
  • Muscle strength
  • Coordination
  • Gait
  • Reflexes
  • Sensory responses
The neurologist asked a lot of questions including my sons earlier years and his development milestones, which had all been normal. The other odd observation that they noted was the birthmarks my son had. Coincidently, my son had a white spot the size of a quarter on his chest and two small brown birthmarks on his sides. To this day I don’t know what the significance of these birthmarks.At the conclusion of this examination the doctor suggested that we do a short-term EEG.  He confirmed that the first event we described sounded like a seizure, but the eye-blinking episodes he was not sure what they were.  He scheduled the short-term EEG, which meant another week of waiting.

I walked out of that office frustrated.  I did not know any more than I did when I walked into the office.  From this doctor there was no sign of urgency, and definitely no movement toward a “cure.”  It was this moment that I decided that I needed to educate myself.
To be continued . . .
  1. WI Snowflake says:

    Thanks for visiting. If interested, some upcoming posts will continue with our experiences with the health care system.

  2. Steph Smith says:

    good luck and hope it gets sorted. I had to wait a good 9 or 10 months before I was put on medication.