Posts Tagged ‘neurologist’

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 . . .

You may already know that I have a son who has several medical issues including Tourette Syndrome.  For the last four years we have sought some relief from the tics which have become more extreme over time.  Up to today we were working with our pediatrician, my son’s neurologist who takes care of his epilepsy, a clinic that uses non-traditional methods, and a neuropsychologist.

The neurologist hasn’t been convinced that all of the events my son has been having are tics.  There is some suspicion that they may be non epileptic seizures, or a combination of both tics and non epileptic seizures.  In pursuit of gaining some relief from these events,  he referred us to a neuropsychologist.  In addition he prescribed, at one time or another,  antihypertensive medications, which are medications whose original purpose is for treating high blood pressure.  The medications we tried included Clonidine (aka Catapres) and Tenex (aka Guanfacine).  Unfortunately the side effects can include sedation, dry mouth, fatigue, headaches and dizziness.  The sedation affect wiped out my son and we discontinued using them.

The non-traditional clinic we saw, which was a part of Children’s Hospital, worked with my son to learn bio feedback.  My son became really good at this.  Unfortunately it didn’t work well with his tics because he needed to do it before the tics started.  Once he is caught in a round of tics he can’t concentrate enough to do the bio feedback.  The key is to identify triggers and hopefully try the bio feedback when a trigger is recognized.  We still try to use this method today, not only for TS, but also when he has to take shots for his diabetes.  It is a great way to just calm down.

This non-traditional clinic also had a psychiatrist that specialized in vitamins, minerals and supplements.  At one time he recommended that my son take:

Omega 3 Fatty Acids
Multi vitamin
Vitamin D

We did this regime of supplements for about six months.  Initially I thought it was working.  We actually had two weeks where my son had no tics. We had not experienced this since the tics had started.  Unfortunately this happened just before another school year started.  Once school started the tics came back with full force.

We continued to work with the neuropsychologist.  She was focusing on:

    • Identifying triggers for tics
    • Identifying tools to use when having tics
    • Tools to prevent bouts of tics
    • Addressing his anxiety
    • Addressing his sensory food issues
It is now four years since the tics started and we really haven’t found any answers.  I believe my son has learned how to identify some of the triggers and tries to minimize their effect.  He has also started eating different foods, which is a huge accomplishment.  I think he would be able to deal with his tics better if he didn’t have to deal with other people and their reaction to the tics, especially in the school setting. School is stressful enough for him, but when he has peers making fun of him, or dealing with adults who are ignorant about Tourette Syndrome, it makes it even more stressful.  This last school year my son missed a lot of school.  The combination of his tics, diabetes and epilepsy was a lose, lose situation.  Due to all of these absences I went on a search for a new specialist for the Tourette Syndrome.  Meanwhile the neuropsychologist suggested that we try medications again and was recommending an anxiety medication, even though we tried this in the past with no positive effect.

Meanwhile the school is pressing me to identify something which would change the circumstances at school.  They acted like I had a miracle cure up my sleeve and refused to recognize they were the main reason his TS was worse.  So, against my judgement, I put my son on the anxiety medication.  It took me about a week to get a hold of my senses and I took him off again.  There was also a period of time where the school nurse was pushing me to get some type of medication that would take the edge off these long bouts of tics that my son had.  She kept sending me names of neurologists, none with any specific expertise, just names.  She acted as if we hadn’t already seen doctor after doctor.  I also have learned that you just don’t pick names out of a hat.  Finding the right doctor is not easy.  Once again, against my instinct, we went to a pediatrician and she prescribed Valium.  I came to my senses pretty quickly on this one and never used them.

As a note of explanation, I am not against these medications.  There are times and people where these medications are not only effective, but necessary.  In regard to my son, in the last nine years he has been on numerous medications for his epilepsy.  Scary medications.  From this experience, I learned that getting the right medication is pretty much a trial and error type of process.  My son was already on a medication for his epilepsy that is also used for anxiety.  It was a benzodiazepine, which works by decreasing abnormal electrical activity in the brain.  Since there were questions about what these events were, I just didn’t want to haphazardly add another anxiety medication on top of the medications he was already on.

It is so frustrating to have an educational system trying to push you toward a medical solution that may not be the best for your child.  I finally wrote a letter to the superintendent, principal, nurse and his teacher that we needed to find a different approach here.  Drugging my son was not the answer.  There are some things we need to accept.  The TS is here and we need to deal with it as it is.  I don’t have any miracles to make it go away.  In addition, it is a fact that with all of the health problems my son has he is going to miss school.  We needed to expect it and plan for it.  It was my intent to push them into a new approach in educating my son, perhaps even supplying a tutor to keep him on track with his class.  Guess what.  No one responded to my letter.  Finally at the end of the school year his teacher emailed and said she would set up a meeting before the end of the year.  I didn’t here from her again.  At that point I just wanted to get through the end of school.  I would deal with the school before school started again.

Earlier in the year I had started looking for a new doctor that may have some expertise and offer a different direction to deal with the tics.  I also wanted someone who would look at the whole picture.  A doctor  said to me when my son was diagnosed with Type 1 Diabetes that it seems to be all related and is probably an autoimmune problem.  Keep in mind my son was dealing with epilepsy, Tourette Syndrome, (possibly nonepileptic seizures), Diabetes, an anxiety disorder, a little OCD, a little Aspergers, a little ADD,  and learning disabilities.  That is quite a bit for a 12-year-old boy.  I am very proud of him for dealing with it all.  I am not so sure I could do the same.  Up to now each of these medical issues were being addressed independently.

Anyway, I went on a hunt.  Thank goodness for the internet.  I noticed that if we were located on the east coast there would be more of a selection of doctors.  Even though we were near a large city, Minneapolis – St. Paul, there still did not seem to be any experts.  So I just started calling hospitals and clinics and requested recommendations.  Initially they weren’t much help.  After reaching out to 30 or more medical centers I called the University of Minnesota Hospital, and they suggested a doctor.  After contacting his office, I found that he had a waiting list and it would be five months before we could see him.  That in itself meant something to me.  It was obvious that people were seeing him.  It was either because there just weren’t that many specialists or he was really good.  I decided we would wait and we would find out.

Finally the five months passed by and it was the day for our appointment.

To be continued . . .

This is a follow-up to my blog called Facing the antiepileptic drugs   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.  

My son was continuing to have multiple seizures on a daily basis.  Before we got back to the neurologist my son had a larger seizure, still not as big as the first one, but I this one was more like  a flutter seizure.  My son was having the same movements with the eye tugs,  but they were rapidly happening and then he fell backwards.  It lasted less than a minute, but it was also obvious he was not cognitive when it occurred.  So now we had seen 3 different types of seizures including:  a tonic clonic seizure (previously known as grand mal seizure), the eye tugging/blinking with head jerks, and these eye fluttering events.

We went  back to the neurologist office.  We discussed  how my son’s personality had changed and the medication Tegretol.  The neurologist said we will define a plan to wean him off the Tegretol.  We also discussed that there was no reduction in seizures and that new types were appearing.  The neurologist decided we should do a long-term non-invasive video electroencephalogram (EEG).  He also said we could start reducing his tegretol medication while this EEG was being done.

As a side note my husband had finally returned from his trip overseas.  He was somewhat shocked when he saw what was happening to our son even though I had described everything in our phone conversations.  I had to spend some time to get him caught up on all of the information that I had learned or that the doctors had reported.  This was a really important task because my husband comes from a culture that still has an old perspective of epilepsy which is tied to a spiritual beliefs.  My goal was not to dissuade his beliefs but instead add the biological, medical perspective.  I have found through our years of marriage it is not good to force a change of thinking and instead lead my partner to a new perspective on his own terms.

Once again we were in a waiting mode.  For this EEG we needed to be admitted to the hospital and the neurologist said we should expect to stay 3 – 5 days.  There was a waiting period for getting admitted to the hospital because there is a limited number of beds on an EEG unit.  Lucky for us our appointment was in a week.  I knew very little about an EEG but soon got first hand knowledge.  Here is a brief definition of an EEG:

An electroencephalogram (EEG) is a painless procedure that uses small, flat metal discs (electrodes) attached to your scalp to detect electrical activity in your brain. Your brain cells communicate via electrical impulses and are active all the time, even when you’re asleep. This activity shows up as wavy lines on an EEG recording.  An EEG is one of the main diagnostic tests for epilepsy. An EEG may also play a role in diagnosing other brain disorders.

This sounded okay, and didn’t appear to be a thing to worry about.  The description was similar to the short-term EEG which we had already done.  The only difference was the longer duration.

Finally the day came and we took our son to the Children’s Hospital associated with our neurologist.  My son was admitted and then we were led to the epilepsy monitoring wing.  We met the technician who was going to get my son prepared for the EEG by placing the electrodes on his head.  This hospital did not call them electrodes and instead referred to them as “buttons.”  The reason they did this was to not raise anxiety or misunderstanding in the child.  The word electrodes could sometimes conjure up images of electricity and children become afraid that the electrodes were going to hurt them.

The first step was to provide a detailed description of what the three types of seizures looked like.  The technician was very patient and took his time explaining to my son what he was doing.  He began to measure my son’s  head with a measuring tape and then marked his scalp with a special pencil, to indicate where to attach the electrodes.  This pencil became my son’s bane.  He hated the sensation and began to cry.  As this was going on I thought to myself why is it necessary for using this type of pencil.  It was ineffective and the technician would have to put repeated strokes on the marking place to get it to leave a mark.  This is an age of erasable markers.  I wondered why they didn’t use them.  (A few years later at a different hospital my son had another long-term video EEG and they used markers instead of these grease pencils.  This was a big relief to us.)  I believe this measuring / marking process continued for about 26 locations on the scalp.

Next the technician started using a something similar to a Q-tip but more sturdy and began scrubbing each spot with a gritty cream with the intention of improving the quality of the EEG recording.  The grease pencil was bad but this scrubbing step was even worse.  My son cried.  We had to take numerous breaks to get him calmed down.  He was only 3 1/2 years old and begged for them to stop.  I had to do everything I could to comfort him and get him through this process.  It wrenched my heart.  He was really terrified.  Finally all the spots had been scrubbed.

The next step was to put the “buttons” on.  The technician brought out the brown bottle of special adhesive which basically smelled like airplane glue.  Each electrode was connected to a wire which eventually would be connected to a device that amplifies the brain waves and records them on a computer.  This process consisted of the technician taking a small amount of pink gel, putting it on the electrode, taking a small piece of gauze, dipping it in the glue, placing the electrode on a specific spot of my son’s head and then covering it with the gauze with the glue.  This continued for all 26 electrodes.

Occasionally the technician would test the signals from the electrode and if they didn’t meet a certain standard for this testing device the technician would use an instrument to rub the skin beneath the electrode.   In some cases if the electrode did not have a good signal they used this device to squirt more pink gel under the electrode.  The unfortunate thing is this device looked like a syringe.  Even though the technician showed my son that it was not a needle my son was still scared.  He wanted to run away and begged me to help him.  They also put two more sensors on his chest for measuring heart rate and pulse.  Finally they wrapped all of these wires together, like a giant braid, and then wrapped my son’s whole head with gauze with the intention of preventing him from picking at the electrodes.

For this first long-term video EEG, this process took almost four hours.  The process would not normally take four hours but the timing depended on how well the child tolerated the process.  By the time we were done my son was wore out and hungry.

The technician led us to my son’s hospital room and plugged the wires into the EEG device.  He showed us where the camera was and that it was important to stay in view of this camera, which meant staying on the bed.  I knew this was going to be the hard part.  Keeping a 3 1/2 year old sitting in once place for a long time is really difficult.  The camera captures body motions while the EEG simultaneously records your brain waves during a seizure. This helps the neurologist pinpoint the location in your brain where seizures begin.

The hospital had some toys and videos to entertain the children.  I knew that my son would be more comfortable with some of his own toys so I told my husband to go home and bring back some of my son’s toys.

The technician also showed me a button that I should push if I noticed a seizure.  This would then mark the recording of the EEG for them to evaluate.  The technician then wanted to take a baseline for the test and ran through the same tests that they do in a short-term EEG such as opening and closing my son’s eyes, asking him some questions, blowing at a pin wheel for several minutes to trigger hyperventilation, and then looking at some flashing strobe lights.

Once the technician completed all of the instructions all we had to do was wait.  And wait.  And wait.

To be continued . . .

Specific information about the EEG was provided by Mayo Clinic at:

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
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.

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 . . .

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 . . .