Posts Tagged ‘seizures’

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If you saw someone having a seizure, would you know what to do? 
        If you’re like most Americans your answer would probably be “no.” This November during National Epilepsy Awareness Month, our national Get Seizure Smartcampaign is aimed at getting information about seizure recognition and first aid into the hands of at least 5 million people—so they will know what to do if someone is having a seizure. We need your help to save lives.         Just last week, my colleague’s husband and son were at a sporting event in Washington D.C. As they were watching the game, a young woman started having a seizure. Fortunately, he knew what to do and took the proper steps to keep her safe and those around her calm. But sadly, no one else around them could offer any help. 
        That’s why I’m asking you to join our 2011 Get Seizure Smart Campaign

        When I hear stories like this, it makes me realize how important it is for everyone to know seizure recognition and first aid. Anyone can have a seizure at any time.

        It frustrates me that there are still so many people who are unaware of the facts about epilepsy and do not know what to do when someone is having a seizure. I know we need to do more to increase epilepsy awareness.         
 You can help us prevent stories like these by taking the following actions today:

  • Take the Get Seizure Smart! quiz at our website. You’ll also find ways you can spread the word.
  • Donate now and help us meet our goal of making 5 million people seizure smart—you will help save lives!

        We cannot do it alone! It is with the help of loyal friends like you who donate and take action that we can make a difference in the lives of people with epilepsy. Thank you. 
 Ellen Woods Signature
Ellen Woods
Vice President, Development


I took the test.  Check out my results.  Take  the test and see how well you know about epilepsy. 



This is a follow-up to my blog called Taking control during a 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 our experience with long-term video EEG’s and sometimes you need to follow your instincts.

As I mentioned in my previous post regarding epilepsy, we finally had captured my son’s seizures on a video EEG, and the epitologist determined that the seizures were coming from the left frontal part of the brain.  With this information, we hoped that it would guide the epitologist with what medications could be effectively used.  They also knew that the seizures started out as Simple Partial seizures but on occasion would change to a Complex Partial Seizure.

At the time I thought we had a big win, but then I found out that numerous anti-epileptic drugs were approved with indications for simple partial seizures, but no specific drug recommended.  You can imagine my disappointment.  We were back in the trial and error process with the medications.

For the next three years my son was prescribed numerous antiepileptic drugs.  There was this constant process of weaning him off one drug and slowly building up another.  Some of the drugs included:  Topomax, Lamictal, Keppra, and Tegretol.  The drugs were scary because of the potential side effects, which is the reason they are very careful about putting you on a medication.  Sometimes when we were choosing which medication to try next, the deciding factor was to choose the medication with the least dangerous possible side effect.

During that three years there was a nine month stretch of time that my son was on no medications.  It was my decision because none of the medications were working.  As I may have mentioned before, I really didn’t like using all of these medications.  Since the medications weren’t helping I decided we needed to take a break from them.  It was also a chance to see if the medications were actually causing some of the seizures.  Over that nine months nothing happened.  He continued to have seizures.  They were no worse or no better without medication.  After the nine months our neurologist made one more suggestion and we went back on a anti-epileptic seizure medication.

As you can guess this drug did not have any positive effect and my son’s epilepsy was classified as irretractable epilepsy, also called refactory epilepsy. Irretractable epilepsy is defined as having seizures that do not respond to medications. Thirty percent of people with epilepsy have these kinds of seizures.

At that point the neurologist suggested that we consider getting an implanted vagal nerve stimulator (VNS).  The VNS was approved by the FDA in 1997 in combination with seizure medication for partial epilepsy in adults and adolescents.  The Epilepsy Foundation provides the following information about the VNS:

Vagus nerve stimulation (VNS) is designed to prevent seizures by sending regular, mild pulses of electrical energy to the brain via the vagus nerve. These pulses are supplied by a device something like a pacemaker.  It is placed under the skin on the chest wall and a wire runs from it to the vagus nerve in the neck.

The vagus nerve is part of the autonomic nervous system, which controls functions of the body that are not under voluntary control, such as the heart rate. The vagus nerve passes through the neck as it travels between the chest and abdomen and the lower part of the brain.

Cyberonics was the manufacturer of the VNS that my son has implanted.  The following information is provided by Cyberonics:

The VNS is implanted via surgery.  The device is implanted under the skin on the left side of the chest.  A second incision is made on the neck where the wire from the stimulator is wound around the vagus nerve on the left side of the neck.  The brain is not involved in the surgery.

Picture provided by Cyperonics at

The device is a flat, round battery, about the size of a silver dollar—that is, about an inch and a half (4 cm) across—and 10 to 13 millimeters thick.  Newer models may be somewhat smaller.

Picture provided by Cyperonics at

The neurologist programs the strength and timing of the impulses according to each patient’s individual needs. The settings can be programmed and changed without entering the body, just by using a programming wand connected to a laptop computer.

For all patients, the device is programmed to go on for a certain period (for example, 7 seconds or 30 seconds) and then to go off for another period (for example, 14 seconds or 5 minutes). The device runs continuously, usually with 30 seconds of stimulation alternating with 5 minutes of no stimulation. The patient is usually not aware that it’s operating.

Holding a special magnet near the implanted device causes the device to become active outside of the programmed interval. For people with warnings (auras) before their seizures, activating the stimulator with the magnet when the warning occurs may help to stop the seizure. Many patients without auras also experience improved seizure control, however.

The battery for the stimulator lasts approximately 5-10 years.

It was a big decision to go down this path.  I did a lot of research.  At the time it had been on the market seven years.  We were very anxious about the decision because we were putting a medical device inside my son’s body with no guarantees that it would work.  Our neurologist indicated my son was ideal for this because he was usually conscious when he had his seizures.  Before we made our finally decision we had an opportunity to meet with a person who already had a VNS.  This was really nice because we could hear her personal experience, see where the incisions were made, and  see how it operated.

As a result of meeting with her, she demonstrated how the VNS affected her voice when it went off.  The vagal nerve is located right by the voice box.  When it is activated it causes the voice box to vibrate if you are talking.  As you get used to it there is no sensation.  When we first got it slightly hurt, no more than a small sore throat.  As the body adjusted to it the sensation goes away.  Plus they slowly increase the current over time so that your body can acclimate to it.

They give you a magnet which you use to activate the device.  When you swipe the magnet across the device  it will activate the VNS but at a slightly higher rate than when it normally goes off every five minutes.  My son uses this if he has the sensation of seizure happening.

In our checkups the neurologist always does a check of the device.  He takes this device and just holds it over the VNS and the two devices talk to each other.  The neurologist can adjust setting and look at statistics about its usage.

Since my son had the VNS implanted he has not had any more tonic clonic seizures (formerly known as grand mal), and he no longer had these flutter seizures where they would rapidly start and stop.  Unfortunately, his most common seizure continued to happen.  These seizures were later determined to be myclonic seizures which consisted of a unsually tugging of the eye, and occasionally affecting other parts of his face and body.  These continued happening frequently, as much as five or six times a day.

My son now has had the implant for seven years, which is close to the time when the battery will need to be replaced.  We will decide if we will be replacing it.  There are times my son wishes he didn’t have it.  He doesn’t like the bump on his chest. Plus he can’t participate in any contact sports.  I suspect we will want them to turn if off and we will see what happens.  If he no longer has those seizures we may keep the VNS off or have it removed.

To Be Continued . . .

This is a follow-up to my post called Our Experience With the Short-Term EEG for Diagnosis of 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 my son’s short-term video EEGs and some of the frustrations we faced.  I also discussed the requirement for perseverance and to trust your instincts.

As I have said, there was a lot of debate about what these events were that my son was having.  My son’s videos of his events were looked at from doctors all over the country.  They were also reviewed at a symposium for practitioners who specialized in movements disorders.  The reviews ended inconclusive.

We had seven or eight long-term  video EEGs at two different Children’s Hospitals and at the Cleveland Clinic.  You may wonder, why so many.  Well my son’s epilepsy was not typical and it appeared there were multiple kinds of seizures going on.  The majority of his seizures started with facial oriented seizures.  They included odd eye blinks, head jerks and eventually body jerks.  One of the neurologists referred to this string of seizures as the Jacksonian spread.  Jacksonian seizures are movements that start in one muscle group and spread systematically to adjacent groups, reflecting the march of epileptic activity through the motor cortex.  In my son’s case the seizure would affect the muscles by his eyes, the side of his mouth and onward.

As a part of the diagnosis process they ran numerous blood tests.  They were trying to see if there was some genetic issue or other neurological disorder.  Eventually it took all my strength to hold my son down so that they could take the blood tests.  As he sat on my lap, I wrapped my legs around his legs and then held his arms as the technician took his blood.  He hated it.  I hated it.  To this day he is terrified to give blood tests.  There was a time in the hospital when they were taking some blood and something went wrong and all of a sudden blood was squirting everywhere.  It totally freaked him out.  It was an accident but, who could blame him from being frightened.

One of the blood tests that they took was checking for metals in his system.  They did this blood test many different times and each time the results came back with the observation that there were unidentified “inclusions” in his blood cells.  I was a little frustrated because something was not right but the doctors did not know what the inclusions were.  In the end they kept taking the test and switching labs until they got the results they wanted.  To this day I don’t know if this was evidence of something that was going on with my son.

During this search for a diagnosis, my son also saw a couple of different ophthalmologists.  When my son has a seizure that affects his eyes and face he complains that it hurts, which is why they sent us to ophthalmologists.   All of the tests with the ophthalmologist did not turn up anything that explained the seizures or the pain.  They did diagnose him with a severe astigmatism.  So he wore glasses from age 3 1/2 until he was 7.  At age 7 the ophthalmologist said my son’s eyesight was near normal and he did not need to wear glasses anymore.  I really don’t understand how you can go from a “severe” astigmatism  to normal within three to four years.  Later still when he was ten, an ophthalmologist discovered something unusual at the back of one of his eyes.  In the end they concluded that it was scar tissue.  Still, I don’t know if this has anything to do with what was going on with my son’s eyes.

We had done so many tests that I could not bear take my son to the doctors.  One of the tests that they did to test for neuromuscular diseases was an intramuscular Electromyography (EMG).  An EMG is a is a technique for evaluating and recording the electrical activity produced by skeletal muscles.  It evaluates the potential generated by muscle cells when these cells are electrically or neurologically activated. To perform intramuscular EMG, a needle electrode or a needle containing two fine-wire electrodes is inserted through the skin into the muscle tissue.  The needle was long, really long.  Like three inches long.  With no anesthesia or pain reliever they inserted this needle into the calve of my son’s leg.  He screamed in pain when they did it.  The technician encouraged him to hang in there and told him it would be over soon.  I held onto him tightly because I didn’t want him to go through this again.

It was torture.  It broke my heart to see him go through this pain and hysteria.  It was clear he didn’t understand why they were hurting him, and he begged me to help him.  He was only four at the time.  The memory of this is vivid in my mind.  It took everything I could to not break down and cry.  In fact, I did cry.  I knew that I had to remain strong for him and if I started crying in front of him it would only make things worse for him.  I really don’t know how this happened, but when I cried the tears only came from one eye, the eye that was away from him that he could not see.  In the end we got through the test which turned out to be normal.

At one time we thought perhaps the seizures were evidence of high or low blood glucose.  My son’s seizures started every single morning within twenty minutes after waking up.  There was a theory that this may be an indication of his blood glucose being off.  So, for five days we woke up and before we ate I took him to our pediatrician and they would test his blood glucose.  I didn’t have the heart to do it myself.  In the end it turned out to be normal.  Oddly, down the road my son’s blood glucose was going to be an important event in our lives.

Over three years my son had three MRI’s.  For the first MRI, they gave him a rectal medication that knocked him out.  Once again I had to hold him down.  The doctor and nurse assured me that he would not remember the administration of the drug or the MRI.  In the end they were wrong.  A short time after these tests, I took my son to a psychologist because he was beginning to show signs of being traumatized.

A traumatic event involves a single experience, or an enduring or repeating event or events, that completely overwhelm the individual’s ability to cope or integrate the ideas and emotions involved with that experience. The sense of being overwhelmed can be delayed by weeks, years or even decades, as the person struggles to cope with the immediate circumstances. (Wikipedia)

At the time I had no idea what a huge effect all of these tests had on my son.  Initially, he exhibited wild, careless behavior.  It got to the point I had to constantly hold his hand because he would bolt off, unaware of any danger around him.  On several occasions I caught him just in time when he was headed toward a busy roadway.  He started showing fits of anger.  Anything could set him off.  There were times he was deeply sad.  You could see it in his face and his eyes.  He also had a real hard time falling asleep and had numerous nightmares when he finally did sleep.

The psychologist, in a playful environment, worked with my son to re-enact what was upsetting him.  He investigated what my son thought of  doctors.  On our third visit this doctor had created a crude replica of the electrodes of an EEG.  Then he asked my son to show him what the doctors had done to him by using a doll.  I was shocked about the details that my son remembered.  At one point he poked the doll on the bottom.  It was clear to me that he remembered them giving him the rectal Valium.  The doctors were wrong.  He remembered everything they did to him.  To him he was being tortured.  He didn’t understand what they were doing to him and why.  He had no understanding about his epilepsy.  He didn’t even have the language skills to talk about what was happening to him.  In years to come, I started to see the impact of this trauma.

Prior to my son’s first seizure I was very sensitive about using drugs.  I had taken the position that drugs could do harm, especially since there are few long-term tests for medications.  Upon the arrival of epilepsy, I had to let down my guard.  I could not fix my son, no matter what I did.  I needed to trust the doctors, even though it was hard.  It wasn’t easy.  It still isn’t easy.  But I was desperate to find out what was wrong with my son, and then hopefully find a cure.

The neurologists were running test after test as a means of eliminating things from the possible diagnosis.  My son was a guinea pig enduring test after test.  At one point we decided to try medication that is used for tics.  They put my son on  clonidine, which is a medication usually used to control blood pressure, but can also be used to control tics disorders.  After trying it for several months we also tried liquid Valium (diazepam), which also did not give him any relief from the eye movements.

Over time the neurologist prescribed many types of antiepileptic medications.  In four years my son had been on:  Clonidine, Valium, Tegretol, Depakote, Lamictal, Keppra, Topomax, and Clorazepate.  Some of the side affects of these drugs include (

  • Clonidine:  Constipation; dizziness; drowsiness; dry mouth; headache; nausea; tiredness; trouble sleeping.
  • Valium:  Drowsiness; incoordination; muscle weakness; tiredness.
  •  Tegretol:  GI upset, weight gain, blurred vision, low blood counts, low blood sodium (hyponatremia). Carbamazepine causes a rash rate of a few percent, sometimes even the dangerous rash called Stevens-Johnson syndrome
  • Depakote:  weight gain, tremor, hair loss, GI upset, blood count decreases, hepatic or pancreatic injury, bone weakness over time (osteoporosis)
  • Lamictal:  dizziness, double vision, headaches, coordination problems, blurred vision,  nausea, vomiting
  • Keppra:   dizziness, fatigue, insomnia, but the more troublesome problem can be irritability and mood changes
  • Topomax:   thinking and memory problems, renal stone,  glaucoma (increased eye pressure) and weight loss
  • Clorazepate:  Blurred vision; clumsiness; confusion; dizziness; drowsiness; dry mouth; headache; lightheadedness; nervousness; stomach upset; unsteadiness; unusual weakness.

The routines for going on a new medication and coming off a medication is exasperating.  Each drug requires that you slowly bring up the dosage over time.  In fact one of the drugs had a rash side effect which could lead to death if administered too fast.  At the time many of these drugs had not been tested for children, nor were approved for children.  In addition, most of these drugs did not have a liquid form.  We then had to cut and crush the tablets and put them into something that you could get your child to eat.  One time I asked the pharmacist what he would recommend that I use to mix the drug with, and he would not recommend anything, because the drug was not meant for kids.  So I was on my own, and we used strawberry pancake syrup.  Later on yogurt worked really well.

So for every drug change it meant weeks to slowly decrease his current medication and then slowly increase the dosage for the new medication.  It was tedious.  In the end, most of it did not work.  At one point one of the neurologists thought maybe the seizures were being precipitated by the medications themselves.  So we took my son off all medications for about nine months.  No change.  The seizures did not decrease, nor did they increase.

For over three years my son had every test the neurologist could think of.  We were no closer to a diagnosis than we were the first day he had a seizure.  More than $200,000  in medical bills and we still did not have any answers, and my son was still having seizures.

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: