This is a follow-up to my blog called Enduring the first long-term EEG.  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 my son’s first long-term video EEG. Enduring it was exhausting and we knew less about what was going on than before the EEG. I had also had my first run in with an insolent neurologist.

The next day after we got home from the long-term video EEG, I called the clinic to make an appointment with a neurologist. I had no faith in the neurologist we had been talking to in the beginning when this all started. There was no way we would be seeing the neurologist that we met while we were having the long-term EEG in the hospital. In fact I didn’t want him near my son ever again. If a doctor does not have compassion then they shouldn’t be a doctor, especially not a pediatric doctor.

It was a coincidence which neurologist we got an appointment with. As soon as we had met her, I knew she was good at her job. I could tell she cared and was determined to help my son. She also did not treat me like a stupid person. She understood my determination and marched in step with it.

The first thing she suggested is that we go to Cleveland Clinic and have another long-term video EEG there with a  specialist that she recommended.  So off we were to Cleveland Clinic and headed for another EEG.  I wasn’t sure if I liked this idea, but when your child is sick you will just about do anything to make them well.  It was hard to believe that we were going to have another EEG in just a two-week time frame.  Over the years I learned that neurologist always want to work with their own test results, especially when it came to EEG results. It didn’t take long to get an appointment at the this clinic, which our doctor arranged, and we were off the next day.  Lucky for us this clinic was about a three or four-hour drive from where we lived.

The big question that we needed answered was what type of disorder was this.  Was it epilepsy?  We knew his EEG indicated Benign Rolandic Epilepsy, but it did not explain the eye tugs and body jerks that happened throughout the day.  It also did not explain why he felt pain or why his hands had developed a tremor.  We wondered, is it tics?  It appeared to be very focal related and it included a blinking of the eyes. Or is there something wrong with his eyes?  Or what?

Upon reaching the clinic we immediately met the neurologist.  Once again we went through all of the questians and answers that we had already discussed with the emergency department, the first neurologist, several hospital EEG technicians, the hospital neurologist, and the last neurologist.  The typical questions that were asked included:

  • What was our family medical history?

My family has had cancer, diabetes, high blood pressure, and two of my fathers siblings had brain tumors. My husband had limited information since he was from West Africa. I knew his mother had asthma and we didn’t know what his dad died from. All of his brothers and their children were healthy.

  • Was there a family history of seizures?

Not that I was sure of. I had a cousin on my mother’s side who may have had seizures. I tried to get a hold of him, but he no longer lived in the United States and the family had lost track of him.

  • Was there a family history of other movement disorders?

No, not that we were aware of.

  • Besides getting tubes in his ears, did he have any other health problems?

A year or so earlier during a check up, they thought he had a heart murmur, but after testing it turned out to not be a problem

  • What was my pregnancy like?

We explained that my son was an IVF baby.  In vitro fertilization.  I was fourty years old and there was nothing unusual about the pregnancy itself.  He was born full term, which ended up in a C-section birth because he was a floater and failed to progress.

  • What was his development growth like? Did he reach all of the typical milestones, such as crawling, walking and talking? Was he breast-fed?

All was pretty normal. He crawled at the right age, but not for long, because he started walking at about 9 or 10 months old. The only thing that was a little unusual was that he never would drink from a bottle. I breast-fed him until he was almost 18 months. Yes, I know that was a long time, but we were both content with it. He was going to be my only baby and I wanted to relish every moment of him growing up. I loved the bond that we had as he nursed. There was such innocence and peacefulness and love. My mom teased me a lot about this, because he had gotten old enough to ask for it. Over those months I tried and tried to get him on a bottle with no success. At the time I didn’t know it, but this was one of the first indications of sensory processing integration issues.

  • What did the seizures look like?  Were there different kinds?  What was the frequency for each kind?  What was the duration for each kind?  Was he conscious during each type? Where was he when he had the seizures.  Etc., Etc.

These questions were very confusing for us. From our perspective at that time he had four types of seizures. His very first type of seizure included a complete stiffness of his body with arms reaching toward his face with a pulse-like movement. At the time he was at our computer on a chair, face turned upward. At the time he was not conscious and eventually stopped breathing. It is hard to tell how long it lasted. I had moved him to the couch and he was stuck in that mode for about five minutes. It then took him another five minutes before he started talking. Looking back, my memory of this is vivid with detail, but it is like it was all in slow motion. It is hard to explain. I clearly remember the look on his face, blank and scared. His hands were in a position as if he was reaching up to his eyes. No sounds came from him. It was nothing like the seizures that we all have classically seen on TV. No full body shakes. No drooling. Very different, but also very, very frightening.  Luckily he hand only had this type of seizure once, which was the first one he had ever had.

The second type of seizure usually happened within twenty minutes after waking up. It would start with a tug at his left eye followed by a blink with both eyes and a slight head jerk. You could feel the tug at the eye if you laid your hand on the side of his face. The muscle jerk had a different feeling than how the muscles feels when you blink an eye. Plus the eye blinking was not like his regular eye blinks. It was much faster. This trio of movements – eye tug, eye blinks and head jerk – at first started thirty to sixty seconds a part from each other. As time went by, the time between occurrences would increase going from seconds to minutes apart, to as long as much as five minutes apart. In duration this series of events could last up to twenty minutes. It was a long time.  Very scary, and I felt very helpless every time it happened. To make it even more disturbing, this didn’t happen just once a day. It happened repeatedly throughout the day. Ten to twenty times a day. Absolutely frightening.

The third type of seizure was very similar to the second type except the timing.  There was no time between the sets of events. Instead, his eyes would rapidly blink. The first time it happened he was in the kitchen and I was about four feet away from him. I noticed him as he tried to walk to me. His gait was not normal, more like forcing himself to walk, almost like he had forgotten how to walk, or like a stiff-legged Frankenstein. When I got to him he had collapsed in my arms. He could not talk. The eye movements were rapid, then pause, then rapid again. This went on for four or five times. It may have been going on longer because I did not see it when it started.  His hands were raised toward his face, as if he was trying to grab it, with his palms cupped. My heart raced and I just held onto him and kept talking to him, letting him know he was okay. I let him know I was with him and it was going to stop. Finally it was done and he just laid in my arms crying.  This type of seizure did not happen often.  Maybe monthly at the most.

The last type of seizure he had was very similar to the second time. It just didn’t have the duration. He would suddenly have an eye tug and an eye blink and it would stop. It was so brief that I don’t think he noticed it was happening and he kept playing. I noticed it because the eye tug and blink were unusual.

These descriptions are etched in my mind. First, because they were traumatic.  Secondly, over the years I have repeatedly described them to each doctor we have met, which have been many, for each EEG, whether it be a short-term EEG or a long-term video EEG, which has also been many. And last of all after he went to day care and eventually to school it was described to all of his teachers, school nurses, OT specialist, language specialist, ect. This happened every new school year. It was much easier in grade school. When he got to middle school it wasn’t just one teacher, but seven or so teachers and a few more specialists. It is exasperating.

This is one big reason I am totally behind getting medical records computerized. A parent is forced to provide these details over and over again. Each time, you worry if you left out something important. You don’t want to leave anything out because you have no idea what aspect of the events is critical information. So instead of spending your time supporting your child through the medical appointment, which he has grown to hate because he is afraid what they are going to do with them, you are left describing these events over and over again.

After gathering all of the information and reviewing some medical records that our other neurologist sent with us, we were admitted to the hospital associated with Cleveland Clinic for the long-term video EEG.

Our next step was to get all of the electrodes on.  This time my son knew what to expect and he was not happy about it.  The minute the technician brought out the glue bottle my son began to get upset.  I had to coax him to sit still and allow the technician to put the electrodes on. Camouflaging them by calling them buttons no longer worked. My son clearly knew what was about to happen. You could call them buttons and he still didn’t want to have anything to do with them.  There was a lot of wiggling, a lot of crying, and lot of begging from my son.  This technician was not as patient as our first one.  By the time he was adding the cream to the electrodes with the hyperdermic-looking tool my son was screaming.  He was really frightened. He begged to go home.  After a long three hours all of the electrodes were finally on and we had him situated on the bed in his room. Unfortunately he still wanted to go home, but he was a little happier because the technician was leaving him alone.

As we were getting set up in the hospital my husband was trying to find a room to stay. We tried to make arrangements with the local Ronald McDonald House, but they were full. He finally found a cheap, little dingy hotel near the hospital.  For myself, I was getting pretty good at sleeping at hospitals.  Thank goodness they provided a cot.  It was not very comfortable, but it did allow you to get some rest, at least enough to make it through the ordeal.

To Be Continued . . .

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