Enduring the first long-term EEG . . .

This is a follow-up to my blog called Preparing fof the first long-term video 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 the process of putting on the electrodes for a long-term video EEG.  We were situated in our room and now we had to wait.

At the beginning of our stay in the hospital for the long-term EEG my son had a smile on his face.  The technician was gone and he could be at ease.  We watched a video while a nurse took his vitals. My son also made his selections from the dinner menu.  The nurse gave me a tour of the area and explained how the couch folded into a cot.  The plan was for me to stay at the hospital with my son.  Eventually a neurologist, followed by an entourage of medical students, came and talked to us.  He explained that our goal was to capture some of these seizures on the EEG and the video.  My thought was, “No shit,”  as if we didn’t know why we were here.  I dislike it when a doctor acts like you are a two-year old when they explain something to you.  On the other hand they need to keep it less technical so a parent can understand.  I don’t think this doctor knew how to manage that balance.  My immediate instinct was caution; this is one I will have to watch.

Day one ended pretty quickly.  So far my son was doing fine.  There were a few times when he wanted to get off the bed and I had to coax him to stay.  At this hospital the patient had to be on the bed in order to be video taped.   In the evening my son had a really brief seizure which was facial focused with the eye tugging and blinking.  My husband left and said he would be back the next day.  So it was just me on my son… and the nurses.  Every three hours they came and checked my son’s blood pressure.  The only other momentous thing that happened that day is that they discontinued the Tegetrol.   The drug had caused some behavioral side affects and we planned to change medications.  Plus the hospital was the safest place to stop a medication.  Sometimes when you are decreasing the dosage of an anti epileptic drug it can invoke a seizure.  With some drugs you can’t just stop the drug.  Instead the body had to be slowly weaned off the medication.

It is sad to say, but in this case we wanted my son to have his seizures so that the doctors could evaluate them.  It is a very odd feeling.  As a parent, I was in “protect” mode, but was now faced with wishing my son would have a seizure.  It just isn’t natural for a parent to wish this.

The first big surprise was that they insisted that the lights be on in the room at all times.  All day, no problem.  All night.  What?  All night.  This was 2002 and this hospital’s cameras needed light in order to film my son.  There was no concern that my son’s sleep would be affected.  In fact they hoped it did affect him because at times sleep deprivation can trigger seizures.  Unfortunately it isn’t just the child that is affected.  So is the parent.  That night it was late before my son fell asleep.  He wanted to lay by me and I had to coax him to stay on the bed.  I pulled the cot close so that he could see me and he could hold my hand.  Finally he slept.

Throughout the night the nurses came in and tested his blood pressure and checked on him.  Sometimes he would wake up and sometimes he didn’t.  Finally we made it through the night.  I was exhausted.  My son, on the other hand, was starting to get fussy.  The environment wasn’t new any longer.  He didn’t care about their toys, and he was tired of the videos.  He desperately wanted off the bed and was irritated that he couldn’t and that this big pony-tail of wires was restricting his movement.

That morning I waited for his seizures to start. At home he usually had a round of seizures that started at about twenty minutes after he woke. This happened consistently, which made me so confident that we would capture the seizures on video and EEG. So I waited. And waited. My son had been awake for about an hour. Breakfast had come and he ate. Still no seizures. Another hour passed and still no seizures. In my mind I took note that this was odd.

After breakfast I helped my son wash up. Perhaps freshening him up would improve his mood. We played some games that the hospital had available. Soon lunch came and my son ate. Later in the afternoon he took a nap. Actually we both took a nap. We were exhausted.

Later that afternoon my son woke up. Soon after waking he had a small round of seizures. Sadly to say I was excited to see them happen. We also talked briefly with the neurologist on duty. He indicated that they would evaluate the event. He wanted us to remain in the hospital so that they could capture some more of these seizures. Plus they wanted to monitor my son since he was taken off of the Tegretol.

There is so much pent-up stress when your child is sick and the doctors can not correct the situation. Up to this event, I thought doctors were miracle workers, and in some cases they are. Unfortunately that was not the case for my son. It is this experience that showed me how little the medical community knew about the brain. It was also true that prescribing anti epileptic drugs was a trial and error circumstance; with epilepsy the patient was the guinea pig. This situation also showed me how important it is for a parent to advocate for their child.

We stayed two more days. My son had a few small seizures, still nothing like he had at home. At this point my son was cranky. He was tired of the environment, tired of the doctors and nurses, tired of being imprisoned by the bed. The electrodes were bothering him. He had started rubbing at them, especially behind his ears. The gauze wrapped around his head was making him hot and he wanted it off.  By day three the connectivity had reduced, even though the technicians repeatedly would come and add the pink gel with the blunt end of the syringe-like device.

Over the three days we had seen the same neurologist who was on duty that week. On the morning of the fourth day the neurologist came in and said that they would be discharging us. He said they had evaluated the test results and the events that we had captured were not seizures. After saying this he started walking out the door, acting very dismissive. I called out to him. “Wait a minute.” He stopped as I walked toward him and I asked “if they are not seizures, then what are they?” He turned to me and said “I don’t know,” and turned to leave.

Now I was angry. My emotions were raw. My son was not well and I wanted the doctor to help him. The last three days had drained me, both physically and mentally. I had thought if we could just get through this we would then have the answer and the doctors would know what to do.

The realization hit me that we had endured all of this for nothing. On top of it all I was facing a neurologist who was acting like he didn’t care. Was he just going to leave us hanging there? No diagnosis. No solutions. Nothing.

The doctor turned to leave and I grabbed his sleeve saying, “And now what? Hold on and listen to me. I don’t care that you have other patients to see.” With anger I continued, “I don’t care that you may have a child across the hall that may be dying. Listen to me. I don’t care. This is my son and he deserves the respect and attention just as much as any other child. We have a problem that needs to be addressed”. The doctor turned to me and said I should make a follow-up appointment with our regular neurologist. She can then determine the next steps.” And then he walked out.

You can imagine how I felt.  I was angry.  Very angry.  There was nothing that I could do at the moment.  So, I helped the technician take off the electrodes.  To do this they put a solution on my son’s head to get rid of the glue.  They slowly one by one removed the glued tape off the electrode.  Once they were all removed they washed his hair to get all of the glue out.  My son had tight curly hair and after I got him home I saw that he still had a lot of glue in his hair.  It was really hard to get out.  So finally we were free.  My husband picked us up and we went home.  My son was elated.

To Be Continued . . .

Epilepsy diagnosis questions

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 . . .

Facing the antiepileptic drugs

This is a follow-up to my blog called A diagnosis of Benign Rolandic Epilepsy . . .   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 Benign Rolandic Epilepsy as a diagnosis for my son.  

As a result of the diagnosis of Benign Rolandic Epilepsy, the neurologist prescribed tegretol, also known as carbamazepine.  My reaction to this wasn’t the best.  I knew my son would have to take antiepileptic drugs, but prior to this all happening I have been one of those people who avoided medications unless it was absolutely necessary.  There were a number of reasons for this including:

• Many drugs do not have research as it relates to long-term effect.  In fact very few drugs are tested for long-term effects. Even if they are tested it is after the drug has been licensed and marketed.  In fact this is the approved definition of clinical trials:

A clinical trial is a research study to answer specific questions about vaccines or new therapies or new ways of using known treatments. Clinical trials (also called medical research and research studies) are used to determine whether new drugs or treatments are both safe and effective. Carefully conducted clinical trials are the fastest and safest way to find treatments that work in people. Trials are in four phases: Phase I tests a new drug or treatment in a small group; Phase II expands the study to a larger group of people; Phase III expands the study to an even larger group of people; and Phase IV takes place after the drug or treatment has been licensed and marketed.

• Many drugs that passed FDA approval later were found to have negative long-term effects.  To name a few and the repercussions of the medication:

• ‘Seldane’, the top-selling antihistamine in the world for more than a decade, was on the market for 13 years until the Food and Drug Administration (FDA) removed it in 1997, 7 years after the drug’s cardiac toxicities were identified in 1990.
• Rezulin’, a diabetes drug withdrawn by Britain in 1997, wasn’t withdrawn by the Food and Drug Administration (FDA) until 2000, during which time Warner-Lambert earned $1.8 billion
• Pondimin:  A component of Fen-Phen, the diet drug approved in 1973.  Its link to heart valve damage and lethal pulmonary disorder wasn’t recognized until shortly before its withdrawal in 1997

• In some cases when a drug has negative effect, rather than taking the drug off the market, the FDA puts a black box label on the drug with warnings.  Why black?  Does black represent a warning?  Why not take it off the market?  Not their problem.  Someone in the future will have to deal with the issues.  At what expense?  A life?  Here is an example (taken from drugwatch.com):

Depakote Recall/Black Box Warning Information: 

Suicidal Tendencies
The U.S. Food and Drug Administration (FDA) has placed a warning on all antiepileptic medications, including Depakote, to alert consumers of the increased risk of suicidal thoughts or actions associated with the medications. Studies have shown that patients receiving treatment with antiepileptic medications may be at twice the risk of suicidal thoughts when compared to patients taking a placebo.

Black Box Warnings

Liver Damage
In some cases, Depakote has been associated with fatal liver failure, primarily within the first six months of treatment. Certain preexisting conditions may increase the risk of liver failure.

Birth Defects
Depakote has been shown to cause severe birth defects such as spina bifida, a neural tube defect, if used by woman who are pregnant. Alert your doctor immediately if you suspect you may be pregnant during treatment with Depakote.

Pancreatitis
Depakote has been linked to life-threatening pancreatitis, or inflammation of the pancreas, in some cases. Pancreatitis may develop immediately after starting treatment or after several years of use.

• There is so much that the medical industry does not know about the human body.  How could they then know the effects of these medications.  I have actually had a doctor tell me that the medication we were discussing works, but they (as in the medical community) do not know why it works.

• There is also the concept of over use of a medication and then no longer effective.  A good example of this is antibiotics.  My son suffered from severe ear infects when he was a baby.  We had tried four different antibiotics before we found one that would work.

• In general it is my belief  that there are too many chemicals that are being put into our bodies and we have no idea what will the effect be.  Our food is injected with chemicals to make the food do something that it normally wouldn’t such as shelf life.

•  Many drugs are not tested to see the results of combining these drugs.  Drugs may behave completely differently when combined with another drug.

• The FDA does not test the drugs.  There is no independent testing.  The manufacturers themselves conduct the tests.  I think there is a conflict of interest here.  The drug companies are to close to our government.

• Finally, I lack trust in the medical industry.  The gap between helping people versus making a profit is almost nonexistent.  A good example is when I recently did a follow-up visit with my doctor.  During our discussion he asked, are you taking your cholesterol medication.  I responded yes.  He then pulls out a letter from my file from a drug company that said that I was behind by one month in renewing the prescription for my cholesterol medication.  This didn’t smell right to me.  What business is it of the drug company?  Greed?  Not my well-being.

Enough of my ranting,  suspicions and conspiracy theories.  With the diagnosis of Benign Rolandic Epilepsy I was faced with the decision to put my son on Tegretol.  It wasn’t really a decision.  What choice did I have?  I was really concerned about the number of seizures my son was having.  Though at the time the neurologists would not comment on the danger of having multiple seizures over and over.  My neurologist is an expert and I laid the life of my child in his hands.  (Later, I learned that this may have not been the right decision.)

So my son went on Tegretol.  Upon prescribing the drug the neurologist told us that we would have to slowly raise the dosage over time.  Red flags.  This in itself should have told me the danger of this drug.  It appeared that raising the dosage too fast had adverse effects.  So the body had to adapt to the drug to avoid the adverse effects.  With my fear of drugs this set off red flags but I decided to just closely watch the situation.

My son was on the drug for probably 60 days.  It was at that stage that I started noticed that my son was changing.  He was having outbursts.  He was really hyperactive.  I had to really be careful and hold onto him when we were out and about because he would just run off.  On one occasion we were at an optometrist and suddenly my son shot out the door to the street and he took off.  An oncoming car almost collided with him.  It was then that I really investigated the drug.  It was obvious to me that the drug was changing my son.

Upon research I found a number of things that scared me.   Yes I should have known this when the drug was given to us by the pharmacist, but at that time all I could think of was that I needed to get these seizures stopped.  They were happening, at varying lengths of intensity, 15 – 20 times per day.  The information that I found for tegretol included:

Up to 30% of individuals may experience sedation

An occasional patient will develop behavioral problems such as hyperactivity.

Common adverse effects include drowsiness, headaches and migraines, motor coordination impairment, and/or upset stomach. Carbamazepine preparations typically greatly decrease a person’s alcohol tolerance.

Other potential side effects which may occur with Tegretol include low sodium levels and increased eye pressure in glaucoma patients. Bone marrow suppression and liver damage occur in rare cases.

Less common side-effects include cardiac arrhythmias, blurry or double vision and/or the temporary loss of blood cells or platelets and in rare cases can cause aplastic anemia.

With normal use, small reductions in white cell count and serum sodium are common; however, in rare cases, the loss of platelets may become life-threatening. This occurs commonly enough that a doctor may recommend frequent blood tests during the first few months of use, followed by three to four tests per year for established patients.

Unless severe reactions warrant, abrupt discontinuation of Tegretol therapy should not be undertaken.

High potential for drug interactions; caution should be used in combining other medicines with it, including other antiepileptics

There are also reports of an auditory side-effect for carbamazepine use, whereby patients perceive sounds about a semitone lower than previously.

Carbamazepine increases the risk of developing lupus by 1.88

Carbamazepine may aggravate juvenile myoclonic epilepsy, so it is important to uncover any history of jerking, especially in the morning, before starting the drug. It may also aggravate other types of generalized seizure disorder, particularly absence seizures.

In addition, carbamazepine has been linked to serious adverse cognitive anomalies, including EEG slowing and cell apoptosis.

The FDA informed health care professionals that dangerous or even fatal skin reactions (Stevens Johnson syndrome and toxic epidermal necrolysis), that can be caused by carbamazepine therapy

It may take a few weeks or longer before you feel the full benefit of carbmazepine

If you have a seizure disorder and you suddenly stop taking carbamazepine, your seizures may become worse. Your doctor will probably decrease your dose gradually.

Your mental health may change in unexpected ways and you may become suicidal (thinking about harming or killing yourself or planning or trying to do so) while you are taking carbamazepine for the treatment of epilepsy, mental illness, or other conditions

Call your doctor right away if you experience any of the following symptoms: panic attacks; agitation or restlessness; new or worsening irritability, anxiety, or depression; acting on dangerous impulses; difficulty falling or staying asleep; aggressive, angry, or violent behavior; mania (frenzied, abnormally excited mood); talking or thinking about wanting to hurt yourself or end your life; withdrawing from friends and family; preoccupation with death and dying; giving away prized possessions; or any other unusual changes in behavior or mood.

Some side effects can be serious. If you experience any of these symptoms or those listed in the IMPORTANT WARNING section, call your doctor immediately

Carbamazepine has been sold under the names Biston, Calepsin, Carbatrol, Epitol, Equetro, Finlepsin, Sirtal, Stazepine, Telesmin, Tegretol, Teril, Timonil, Trimonil, Epimaz, Carbama/Carbamaze (New Zealand), Amizepin (Poland), Karbapin (Serbia), Hermolepsin (Sweden), Degranol (South Africa), and Tegretal (Chile). (Information from Wikipedia.)

After reading all of this I was pretty frightened.  It was also was an explanation for the change in his personality and his hyperactivity.  Then on top of it all, after a couple of months of taking the drug his seizures had not reduced.  Back to the neurologist we went and requested that he be taken off the drug.  It took another month or so to wean my son off the drug.  Meanwhile they didn’t want to start a new drug due to drug interactions and if new symptoms occurred they wouldn’t know which drug may be causing it.  This whole experience told me that I need to sit up and pay attention.  My son’s life needed to be in my hands.

To be continued . . .

A diagnosis of Benign Rolandic Epilepsy . . .

This is a follow-up to my blog called The first 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 the first short-term EEG that my son had, including a description of what happens during the test, the diagnosis of Benign Rolandic Epilepsy (BRE), and the prescription for Tegetrol.

Yes, we got a diagnosis.  I also found out that I really didn’t know a thing about epilepsy.  I didn’t realize there were so many different kinds.  There was so much confusing terminology describing it.  Plus over the years the terminology has changed.  It was pretty overwhelming.

I decided the first thing I needed to do was to educate myself.  The internet was pretty prevalent, but not as it is today.  Even so, the first thing I did was to go to Amazon and I bought 7 or 8 books, clinical technical books, about epilepsy.  Over the first year after my son’s diagnosis I spent over $6,000 on books.  That sounds like a lot of money, but these books could be as much as $500 a book.  Luckily I had set aside some money and could afford them.  I didn’t care how technical they were, I knew I needed to do everything I could to understand what was happening to my son.

I learned a lot about BRE.  The following information is a description from the Epilepsy Foundation:

Benign Rolandic epilepsy (BRE) accounts for more than one-third of all cases of epilepsy that begin in middle childhood, accounting for 16 percent of those beginning before age 15. There is a family history in 18 percent of cases and the condition is probably genetically determined.

Rolandic epilepsy is the most common type of benign partial epilepsy. Seizures start as simple partial, usually beginning in the face. There may be drooling and temporary inability to speak, although consciousness is preserved. The seizures then generalize to tonic-clonic convulsions.

Most of the seizures are nocturnal and occur during sleep. Neurological and other functioning is usually normal, while the EEG shows a dramatic focal spike most often in the centrotemporal regions of the brain. Most children are seizure free five years after onset; by age 14, 95 percent will have undergone permanent remission.

Some of this description matched the most recent events that my son was experiencing.  The seizures were facial oriented and he was having these eye blinking episodes that came in clusters.  It really wasn’t an eye blink but more of a tug at the side of the eye along with a blink and eventually a jerk of the head.  He had been having these episodes every day since the first seizure, but they weren’t happening at night.  Instead they started around twenty minutes after waking up.  I could almost time it.  It happened every day.  Many times a day.

It also did not describe my son’s very first seizure, which both myself and the neurologist thought was a generalized seizure, a tonic clonic seizure (previously called a grand mal seizure). Tonic clonic describes two stages of the seizure.  First there is a stiffening, rigid aspect and a loss of consciousness which represents the tonic stage, and then followed by shaking cases by the flexing and relaxing of the muscles, which is the clonic stage.

As my son continued to have theses seizures that happened every day and several times a day,  I finally got smart and started video taping the events.  This became pretty easy because he had the seizures every morning.  So I just kept my video camera on a tripod, positioned at his seat on the couch where he watched cartoons.  This is probably the most important tip I can give anyone when they are diagnosing seizures and don’t seem to  be getting the right answers.  Video taping.  Over and over again.  Keep video taping.  At first this was hard, because I would panic when the seizures started.  As time went by I panicked less, and eventually did not panic at all.  Every once in a while the seizures would be different and more severe which brought out the panic once again.

The video taping became very useful.  The neurologists studied them.  They shared them with their colleagues.  At one point our neurologist took my son’s seizure videos to a conference of neurologists that specialized in movement disorders.  In fact we sent the video to specialists all over the country.  And eventually, I used them to teach my son’s school how to recognize the seizures and what to do when they occurred.

As I studied about epilepsy I found out that Benign Rolandic Epilepsy is a simple partial seizure and named after the rolandic area of the brain, which controls movement in the affected part of the face.  This area is also called the centrotemporal area.  Another name for BRE is sylvian seizures, which is named after the location of the discharges near the Sylvian fissure of the brain.   BRE is characterized by:

• nocturnal generalized seizures of focal onset (in one general area of the brain)
• diurnal (daily) partial seizures arising from the lower rolandic area
• an EEG pattern consisting of a midtemporal-central spike focus

The medical literature said the condition is considered benign because most children with the condition outgrow the seizures.  But, for the period of time while the disorder is active, some children will have learning difficulties and behavioral problems.   The seizures  can usually be controlled by any of the common seizure medicines. Neurontin (gabapentin),Trileptal (oxcarbazepine), Tegretol or Carbatrol (carbamazepine).

Confused yet?  Well, I was.  To be honest, as I continued to learn about Benign Rolandic Epilepsy, the more I doubted the diagnosis.  What next?  I had no idea that BRE was just the beginning of it all.

To be continued . . .

The first EEG

This is a follow-up to my blog called The first neurologist appointment. 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 our first appointment with a neurologist, including the types of tests they did and the misconceptions in my head.

After meeting with the neurologist we waited another week for our appointment for the EEG test. At this point I did not really know how an EEG test was done. Little did I know that we would become very familiar with EEG tests.

An electroencephalogram (EEG) detects abnormalities in the brain waves or electrical activity of the brain. During the procedure, electrodes consisting of small metal discs with thin wires are pasted on the scalp. The electrodes detect tiny electrical charges that result from the activity of the brain cells. The charges are amplified and appear as a graph on a computer screen. A neurologist who is specially trained in EEG then interprets the reading.

While we waited for our appointment my son continued to have multiple episodes every day of this unusual blinking. Occasionally the blinking was accompanied with a head jerk. When I say multiple times per day, I mean he had fifteen to twenty times per day lasting as little as a few minutes and as long as twenty minutes. As he would have an episode, the rhythm between blinks became further and further apart as time passed by.

The other noteworthy observation was that he constantly rubbed at his eyes when the episode would begin. Unfortunately he was really young, three and a half years old, and was not able to tell me what it felt like. But I could tell he knew it was happening and he knew it was something new happening to him.

Before the EEG appointment, they instructed us to wake up extra early in the morning, because they wanted the child to be tired while they were being tested. The idea was that with lack of sleep seizures were more likely to occur. This sounds easy, but he was only three years old and he wanted to sleep.  We woke up extra early at 4:00 a.m. I did everything I could to keep him awake until we got to our appointment for the EEG.

The first step of having an EEG is to provide the technician with a detailed description of what the seizures looked like. I provided two descriptions, including the characteristics of the very first seizure and then the subsequent blinking, head jerking episodes.

After this was documented the technician put the leads (electrodes) on specific places of the scalp. For children this clinic did not call them electrodes.  Instead they called them buttons.  The technicians did measurements for each spot and marked this placement spot with a grease pencil. After marking all of the area the technicians scrubs at the spots to ensure a good connection.  This being my son’s first EEG he tolerated this process even though it took about an hour to get all of the spots measured, scrubbed and then using a conductive gel placed the twenty or so electrodes to my son’s head. The technician explained to me and my son that my son would have to be real still so the electrodes remain in place. She said if my son could not be still then she would have to use glue.  Luckily, for this EEG my son remained very still.

Some of the things they look at on an EEG are bursts of electrical activity (spikes), whether the two sides of the brain show different patterns of electrical activity, or sudden slowing of the brainwaves.  When a person has epilepsy, the location and exact pattern of the abnormal brainwaves may help show what type of epilepsy or seizures the person has.  Keep in mind that in many people with epilepsy, the EEG may appear completely normal between seizures.  An EEG by itself may not diagnose or rule out epilepsy or a seizure problem.  The other component to keep in mind is that an EEG only measures surface level brain waves.

Once they had all of the electrodes in place they did a series of tests including: blowing at a pin wheel to make him hyperventilate, opening and closing his eyes, answering questions and watching a strobe light at varying frequencies. Then they let him sleep for about 20 minutes while recording the brain waves.

We got through the EEG. I did not see any of the events like what we saw at home. None of the test provoked a seizure. It’s odd but I was a little disappointed. Of course I didn’t want my son to have a seizure, but I wanted a diagnosis. For some reason I thought if I had a diagnosis then he could be made well.  Once again one of those misconceptions.

Then I was hit with reality. It would be several days before we would have the results. The technician has the skills to perform the test, but could not evaluate the results. Once again we were in a waiting mode.

While I waited for the results I continued to stay home with my son. He continued to have the blinking episodes. After three weeks of watching him, I started to see some patterns with the blinking episodes. First of I noticed that my son had a twenty-minute episode of these blinking episodes every morning within a half hour of waking up. The other observation I had is that bright sunshine seemed to trigger the events. Both of these observations happened every single day.

Finally we got a phone call from the neurologists office. The woman calling us said when my son was going through the sleeping part of the EEG test, his brain waves showed patterns of a seizure. The woman called it Benign Rolandic Epilepsy. She then said they were prescribing Tegretol, and she explained the frequency of the medication. She then said that I should make a follow appointment in a month. And then that was it. I didn’t even get a chance to talk to the neurologist. No opportunity to ask questions. Nothing. And that was our first experience with our neurologist, an EEG, and seizure medication.

To be continued . . .