The time has come again for us to go to Children’s Hospital Boston for an overnight EEG for Rhema. This is a very familiar procedure to many of us in the autism community, but for those who are unfamiliar I wanted to briefly explain what is involved.
A technician measures and marks your head with a red pencil. Then 32 electrodes are glued to your scalp one at a time; gauze is placed over each electrode with some sort of liquid adhesive and then cold air is blown through a small tube over each electrode. Then the head is wrapped in gauze-like material and a meshy cap is placed over the head. The whole process takes about an hour.
It is not a painful procedure, although Rhema always leaves with small burns on her forehead and scalp from the electrodes and adhesive. And for a child with sensory issues, the smell of the glue, the noise of the air tube, the sensation of being held down and having your head and face handled can be frightening and overwhelming. However, Rhema has had so many EEGs and BEAMs (Brain Electrical Analysis Mapping) in the past 2 years that she is getting to be an old pro at handling this. At her last overnight EEG four months ago, she did not even make a peep while the electrodes were being applied.
For 24 hours, Rhema’s brain wave activity is recorded and she is confined to one room. Her room is hooked up with video so that technicians can record anything they see physically and correspond that with what Rhema’s brain is doing. The hardest part is keeping Rhema entertained and distracted from yanking the leads off her head. We try to keep her from jumping off the windowsills or doing back flips off the hospital bed or trying to climb up the metal arm that the TV is attached to. 8)
At Children’s Hospital in Boston, a study that is often performed on children with autism or a regression in language is the BEAM study. The BEAM is essentially an enhanced EEG that uses a lot more electrodes than the standard EEG and also has the ability to “measure” auditory processing responses. The man who developed the BEAM is a doctor at Children’s, and although we have never met him, he has written countless reports on Rhema. The reports are full of medical jargon that our neurologist tries to explain to us, but there is always a conclusion section written in “English” so that the average parent can understand. The first sentence in the conclusion section for Rhema’s BEAM studies have always said: “This is an abnormal study…”
After Rhema’s last BEAM, I was really hoping to get a good report because of medication changes, dietary changes and the introduction of supplements. Instead the conclusion read, “This is a very abnormal study.” After a year and a half on anti-seizure meds, the spiking brain wave activity has only increased. In fact, the report stated that Rhema’s brain was spiking so much that they could not get a normal reading for more than 2 seconds.
A friend explains spiking like this: “Say you’re sitting reading a book and you have a massive seizure that knocks you off your chair. Your whole brain is not functioning due to the seizure and you no longer can read. With “spiking” it’s different. Again say your sitting reading a book, spiking would be someone consistently poking you in the arm taking your focus off your reading because you’re being irritated by the poking.” In Rhema’s case, her BEAM study showed that the brain spiking is occurring 85 – 100% of the time, and it is occurring on both sides of her brain, most strongly in the speech centers of the brain. There has been some speculation that Rhema may have a variant of Landau-Kleffner syndrome as her spiking increases significantly when she is asleep.
Phew. If you’re still with me, thanks for reading. The doctor that created the BEAM study is supposed to be the attending physician while we’re in the hospital, so we’re really hoping for the chance to finally meet him and pick his brain (no pun intended)!
For those interested, here is an interesting article on how EEGs are increasingly being used as a diagnostic tool for autism.