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