EEG Telemetry Update

Thank you all for the well-wishes on Soren's EEG.  Things went very well at Children's Hospital.  First of all, Children's has a SWEET set-up for their EEG telemetries.  At previous hospitals, the whole machine was in the room.  There was a camera and a tv monitor and the EEG monitor, all of which took up a huge amount of space.  But at Children's, they have a camera and speaker in the ceiling, so you're not negotiating around all this equipment.  And then they have an area outside the room on the hospital floor where technicians are monitoring a bunch of kids getting tested.  It was really impressive.  

But Soren is a funny kid.  As soon the technicians started putting the EEG leads onto his head, he check out, starting with a light doze.  Then, for the next 20 hours, he only woke up about 5 times to see what was going on.  He saw he was in the hospital and was unimpressed, so he checked out again.

During the testing, he had 6 seizures.  3 tonic-clonic seizures, which epilepsy.com will now describe:

What is a tonic-clonic seizure?

This type is what most people think of when they hear the word "seizure." An older term for them is "grand mal." As implied by the name, they combine the characteristics of tonic seizures and clonic seizures. 

• The tonic phase comes first: All the muscles stiffen. Air being forced past the vocal cords causes a cry or groan. The person loses consciousness and falls to the floor. The tongue or cheek may be bitten, so bloody saliva may come from the mouth. The person may turn a bit blue in the face.
• After the tonic phase comes the clonic phase: The arms and usually the legs begin to jerk rapidly and rhythmically, bending and relaxing at the elbows, hips, and knees. After a few minutes, the jerking slows and stops. Bladder or bowel control sometimes is lost as the body relaxes. Consciousness returns slowly, and the person may be drowsy, confused, agitated, or depressed.
• These seizures generally last 1 to 3 minutes.
• A tonic-clonic seizure that lasts longer than 5 minutes needs medical help. A seizure that lasts more than 10 minutes, or three seizures without a normal period in between, indicates a dangerous condition called convulsive status epilepticus. This requires emergency treatment.

Soren's tonic-clonics generally only last about 30 seconds to 1 minute.

He also had 3 myoclonic-seizures, which epilepsy.com will describe here:

What is a myoclonic seizure?

Myoclonic (MY-o-KLON-ik) seizures are brief, shock-like jerks of a muscle or a group of muscles. "Myo" means muscle and "clonus" (KLOH-nus) means rapidly alternating contraction and relaxation—jerking or twitching—of a muscle. Usually they don't last more than a second or two. There can be just one, but sometimes many will occur within a short time.

Even people without epilepsy can experience myoclonus in hiccups or in a sudden jerk that may wake you up as you're just falling asleep. These things are normal.

In epilepsy, myoclonic seizures usually cause abnormal movements on both sides of the body at the same time. They occur in a variety of epilepsy syndromes that have different characteristics:

• Juvenile myoclonic epilepsy: The seizures usually involve the neck, shoulders, and upper arms. In many patients the seizures most often occur soon after waking up. They usually begin around puberty or sometimes in early adulthood in people with a normal range of intelligence. In most cases, these seizures can be well controlled with medication but it must be continued throughout life.
• Lennox-Gastaut syndrome: This is an uncommon syndrome that usually includes other types of seizures as well. It begins in early childhood. The myoclonic seizures usually involve the neck, shoulders, upper arms, and often the face. They may be quite strong and are difficult to control.
• Progressive myoclonic epilepsy: The rare syndromes in this category feature a combination of myoclonic seizures and tonic-clonic seizures. Treatment is usually not successful for very long, as the patient deteriorates over time.

When his neurologist came to speak to me about the test results, she noted that Soren's heart rate begins to go up BEFORE his myoclonic seizures begin.  In regards to the VNS, this is really great information.  The VNS will be programmed to turn on when Soren's heart rate goes up.  And HOPEFULLY, this will stop the myoclonic seizures begin, which would be really exciting.  Although they are really fast seizures, they are stop strong, they can really wipe Soren out.

Once the testing was done, a guy came to take all the leads and stuff off Soren's head.  As soon as this was done, Soren opened his big brown eyes and looked around as if to say, "Oh, good.  Is that all over?  Let's go!"  Like I said, funny kid.

Amy  

Our Latest Adventure with Soren

Today we begin the process of Soren's latest adventure--getting a Vagus Nerve Stimulator implanted into his body.  Now, for those of you that don't know what a VNS is or what it does, here's an explanation from epilepsy.com:

Vagus nerve stimulation (VNS Therapy®) 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.

• The VNS device is sometimes referred to as a "pacemaker for the brain." 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.

How is VNS used?

• The neurologist (or licensed professional) programs the strength and timing of the impulses according to each patient's needs. The settings can be programmed and changed by placing a wand over the generator on the left side of the chest. The wand is connected to a handheld computer. 
• For all patients, the device is programmed to go on (give stimulation) for a certain period (for example, 7 seconds or 30 seconds) and then to go off (stop stimulation) for another period (for example, 14 seconds or 5 minutes). The device is set to give stimulation at regular intervals during the day, 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 (generator) triggers the device to deliver another burst of stimulation, outside of the programmed intervals. For people with warnings (auras) before their seizures, activating the stimulator with the magnet when the warning occurs may help to stop the seizure. 
• Settings (also called stimulation parameters) set by the neurologist typically include a stimulation amplitude of 1.0 to 3.0 mA (milliamperes), a stimulation frequency of 20 - 30 Hz (hertz), and a pulse width of 130 - 500 microseconds. By adjusting these settings, the doctor not only may be able to control more of the patient's seizures, but often can also relieve side effects. One study, for instance, found that changing the pulse width eliminated pain that some patients were experiencing.
• The battery for the stimulator lasts approximately 5-10 years, depending on the settings used.

However, Soren is not getting the VNS implanted today.  That will hopefully happen some time in May.  Today I'm taking him for a 24 EEG telemetry at Children's Hospital.  Once again, I shall let the good folks at epilepsy.com explain this...

What is a Video EEG test?

A Video EEG test records your brainwaves on an EEG and a video of what is going on at the same time. The purpose is to be able to see what is happening when you have a seizure or event and compare the picture to what the EEG records at the same time. Sounds that occur during the testing are also recorded - this can pick up if a person talks or makes sounds during an event. By doing this, doctors reading the EEG can tell if the seizure or event was related to the electrical activity in the brain. If so, we'd call this an epilepsy seizure.  

• Video-EEG is most helpful to determine if seizures with unusual features are actually epilepsy, to identify the type of seizures, and to pinpoint the region of the brain where seizures begin. Locating the region precisely is essential if epilepsy surgery is being considered.
• Other names for Video EEG tests include: EEG telemetry, EEG monitoring, or Video EEG monitoring. Usually these terms mean the same thing.

Then next week Soren will have an MRI of his brain done.  Now, Soren has had EEG telemetries and MRIs done before, but it's been a number of years.  The neurologist in monitoring Soren's VNS has never seen Soren's seizure activity.  And getting a more up-to-date look at his brain development is good.  Plus, it's much harder to do an MRI once the VNS put in due to the magnetism.  

So, as I stated above, today is the start of the adventure.  I'm preparing for our 24 hour hospital stay--bringing Soren's laser lights so he has something to look at, my computer for some writing and to catch up on "The Blacklist," old People magazines for some light reading, and my ukulele to entertain myself and Soren.  On Wednesdays, the Farmer's Market comes to Children's Hospital, so I'm going to get some hummus and pita chips for snacking.  

Then I'll wait for my son to have seizures over the next 24 hours, which in this instance is exactly what we want.

Wish us luck!

Amy