This is a follow up to my blog called After the first seizure . . .   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.

On that Monday, the day after my son had a seizure, I sat in my house and just watched him. He was 3 1/2 years old at the time. In the afternoon as we were taking a walk outside, I noticed some unusual blinking of his eyes. The best way of describing it was, there was a tug at the eye and then followed by a blink.  The tug at the eye was also stronger on his right side. The blinks started out at about 10 – 15 seconds apart and eventually slowed down to few minutes apart. From beginning to end, this event lasted about twenty minutes.

This episode really confused me. It looked nothing like the seizure he had the previous evening. He seemed fine as it went on, occasionally putting his hands to his eyes to rub them. I had never seen him do this before and I wasn’t sure what it was.

Throughout the day and into the next day I tried to identify how this all started. What was unique about the last few days?The first thought that came to me was the eye test that was conducted at the daycare.  Not only was it a recent event but it also had to do with my son’s eyes.

The daycare had a specialist come in and test the children’s eyesight via a method called photo screening*. At that time photo screening was a relatively new type of technology.  It is a method of looking at the way light reflects off the eye. This is recorded on a Polaroid film image. The light is reflected from the camera strobe in a horizontal flash and in a second vertical flash onto the film, which provides the image of two sets of eyes. Depending on the light reflections, the medical doctor reading the photographs can determine if the child is at risk for some serious eye problems such as Amblyopia and Amblyogenic Factors. They can even detect some minor eye refraction errors. According to literature the technique has been shown to be 85-90% accurate.

Amblyopia, or Lazy Eye, is a general catchall for a variety of vision disorders resulting from unequal vision in both eyes. From the Greek words amblyos (dull) and opia (vision), thus meaning reduced vision in an eye from disuse. The screening is targeted at children who are pre-verbal and who may not understand how to describe to parents, teachers, or doctors the fact that they do not have perfect vision.  (Information provided by:  Operations Kids Sight*)

In our case the test was administered at the beginning of the previous week. On that Friday, the daycare called me and said they were repeating the test because my son did not pass the first test. In the end they got the same results with the second test. They sent a note home informing me of the failure with the test and a recommendation that my son be examined by a opthalmologist.

I called the daycare explaining what was happening to my son.  I requested contact information for the agency that performed this eye test.  After receiving this information, I gave them a call and asked them how the test was performed.  Believe it or not, I had consented to the test and did not know how the test was performed.  I also asked the agency if there were any risks with the test, and they indicated no.  I asked if there has ever been evidence of a seizure being triggered as a result of the test, and of course they said absolutely not.  I soon came to the realization that it didn’t matter.  The seizure happened.  Perhaps it had nothing to do with the seizure.  Or if it did serve as a trigger, the seizure could have been triggered by some other event.  The bottom line is I can’t turn back the time – no longer how much Cher sings about it.

The second day of the first seizure as soon as we woke up my son had another episode with these blinks.  Once again he acted fine.   Within another hour he had another round of the eye blinking.  It was then that I decided I could not wait for the Friday appointment.  It was obvious that there was something wrong with my son.  I then took him to the emergency room at the Children’s Hospital.  A neurologist  examined my son and said that we needed to go forward with our appointment on Friday.  He explained to me that there are many types of seizures and also many kinds of medications.  He convinced me that we should wait.  He also said he would document my son’s records to suggest a short-term EEG test.

The neurologist was kind, and looking back I think he was being honest, but at the time I was infuriated.  It was basically like the doctor was patting me on my head and telling me to see another doctor.  This was one of those times when I wish doctors would recognize that we were a family in shock and in crisis. My baby had a seizure and I was really frightened.  But they were oblivious to this, and I was soon to find out that this reaction was pretty common among doctors.

To be continued . . .

*Please Note:  Photo Screening and Operations Kid Sight had nothing to do with my son’s seizure.  The above description is just thoughts that went through my mind.  In fact the photo screening proved to be valuable to us, because after my son saw a opthalmalogist it was determined he had an astigmatism and needed glasses.

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