Posts Tagged ‘lazy eye’

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.

If you have been following my blog you may know that me and my family lived in Ohio and I was working as an independent technology consultant.  The work at the bank was going really well.  I was slowly getting the management team to take responsibility for using the new application in a way that it was meant to be used.  If they continued in this manner, the bank would reduce their expenses which was the original purpose of the application.

By this time my son was 3 1/2 years old.  During week days he was in day care, even though I was reluctant to do so. He was a typical healthy little boy who goes through some typical illnesses. When he was really young he had quite a few ear infections and we ended up putting tubes in his ears.

Around that same time a doctor said he heard a heart murmur, which was a little scary. After the tests it was determined it was not a hole in the heart. What the doctor heard was probably due to thin walls between the chambers.

It was a Sunday evening when our lives extremely diverged down a different path. It was just me and my son together at the time. My husband had recently went on  a business trip to West Africa.

Up to this time I was enjoying being a mom. My son was the delight of my life. I was gracious to have him in my life. He really was my little miracle baby. I was enthralled with watching his development and achievements. I know this sounds odd, but it was fascinating to watch him evolve from a infant to an independent little boy. He was energetic, a quick learner, and joyful with the life that was given him. As a mom, the experience could not be any better.

That March Sunday evening we had just finished eating and I was washing clothes. I was getting things organized for the coming week. Our laundry area was in a room adjacent to the kitchen. Just off to the side at  the entry way to the kitchen was our computer.

The day before this Sunday, my son had discovered a new hobby which was the beginning of him loving games. I had introduced him to the world of computers at a very young age. Even when he was a pre-toddler I had a software application that a baby could play with. Touching any key on the keyboard caused a visual and audible response. This way a young child could interact with it and not need any knowledge of how to use a keyboard or a mouse or even what a computer was.

It was on that Saturday that my son realized that there was a whole new way of having fun. Throughout that day, he obsessively played games on the computer. It was hard to get him to stop and eat. Then on Sunday I decided the computer was off limits for most of the day. That evening, while I was finishing up some chores, I let him play while I finished up my chores before bedtime.

I was carrying a load of clothing into the laundry when I glanced toward the computer where he was sitting.  Seeing him facing me, I immediately knew something was wrong.  His face was turned upward and looked as if he was stuck in the pose.  His eye lids were shut and his hands were up to his face, as if he didn’t understand why his eyes were closed. 

Soon his body started to have jerking movements.  I instantly grabbed him before he fell off the chair.  It was then that I noticed he was not breathing.  As I held him I lightly pounded on his upper back.  I didn’t know CPR, but had learned mouth to mouth resuscitation when I was very young.  I laid him down on the couch and was tilting his chin up when he started breathing again.  I was immediately relieved, but the crisis was not over.

Meanwhile his body was having these pulse-like movements and his eyes were still closed with twinge movements behind the eyelids. I felt like this was an awful dream.  I knew I should call 911.  I am not real sure how much time had went by.  It felt like a long time but was probably more like five minutes or so.  Before I could dial the phone, his eyes opened and the pulsing movements quit.  It then took several more minutes before he talked.  It was at that moment that I realized he had a seizure.  The adrenalin in me was slowing down and I broke down sobbing.

The whole experience was frightening. A first-time seizure isn’t anything you expect or that you can prepare for. You wonder, how could something so jarring affect this wonderful little creation that has come into your life. How could something so numbing attack that which is in your life that is pure innocence?

You ask yourself, why my son? Why my family? Did we do something that lead to this? Is this retribution? If so, for what? And why my son? He does not deserve this. If only the burden could be put on my shoulders. Let him live his life the fullest, and not have this cloud hanging over him. Even though we had not seen a physician yet, something inside me told me our life had changed and we were headed down a different path.

To be continued . . .