This Is An Abnormal Study

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.

15 thoughts on “This Is An Abnormal Study

  1. That’s so interesting. Kayla had a 24 hour EEG, her neurologist was also talking about Landau Kleffner Syndrome. I was a little surprised because isn’t LKS a very rare condition? (Kayla’s EEG was “relatively normal” according to the neruo).

    Is there anything you can do about the adhesive reaction? Kayla had such horrible welts after her EEG. And now she even blisters up when you put a Band-Aid on her. I need to schedule a sleep study, and I’m afraid she’ll have another bad reaction since they have to put those electrodes on again.

  2. You are such a great resource! My son Taz recently had a regular EEG to explore whether his epilepsy is contributing to his progressive decline in skills, IQ, and developmental level. The BEAM sounds much more useful.

    As to the spiking (we’re only seeing spikes once an hour and suddenly that doesn’t sound so bad), I read a description once by a child with seizure disorder who said that, for him, it was like watching a movie where the image on screen flicks on and off randomly, or a radio station that keeps losing signal. It’s no wonder our kids have such a difficult time in the world.

    Kisses to Rhema and you.

  3. Best wishes for the EEG! And thank you so much for the detailed information — I knew much of it given our EEG experiences with Joy (though the longest one we’ve had is a 4-hour) but I had never heard of the BEAM/qEEG. Definitely something to ask our neurologist about. One question I’d have is: with all that extra information, does it really help with treatment, or is it a case of “we know a lot more about what her brain’s doing, but we’re still making best-guesses as to medications and such”?

    Big hugs!

  4. The auditory processing piece of the BEAM was useful for us. Without getting too technical, they actually put special headphones on the child (over the electrodes) and send different sound “clicks” through the headphones, then they measure the brain’s response. Rhema’s first BEAM result showed absolutely NO response on the left side of the brain and only a weak response on the right side and it was in the wrong region of the brain (!!!)

    As far as I know, the BEAM is only offered at Children’s in Boston. JoyMama, you hit the nail on the head – there has been some debate as to its usefulness. For us, the info was helpful in that it confirmed that Rhema did in fact have auditory processing problems, and it helped us make the decision to put her in Tomatis/AIT (auditory integration therapy). Our insurance did not cover a penny of the therapy, but we were willing to spend the $$ b/c we knew for sure that she had auditory processing problems. Incidentally, subsequent BEAMS has shown a huge improvement in Rhema’s brain response to the “clicks.” Not sure if the therapy helped or if the Depakote helped, but it’s gotten better.

    Thanks for the well wishes!

  5. Bless her precious heart! As you were sharing Rhema’s testing experience, I just sat here wondering how she processes this world, and my heart was led to this Scripture:

    “… it is written: ‘No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love Him’ — but God has revealed it to us by His Spirit. The Spirit searches all things, even the deep things of God. For who among men knows the thoughts of a man except the man’s spirit within him? In the same way no one knows the thoughts of God except the Spirit of God. We have not received the spirit of the world but the Spirit who is from God, that we may understand what God has freely given us. This is what we speak, not in words taught us by human wisdom but in words taught by the spirit, expressing spiritual truths in spiritual words.” (1 Corinthians 2:9-13)

    I’m sure Rhema knows the Lord better than we do. 🙂

  6. Hi. We have never met. I recieved your website from a friend of a friend of a friend. I am not really into blogging and do not even usually comment, but your site reaches me so much that I check it regularly and have forwarded to many. My son is autisic and so many of the things you write about make me laugh and cry because I’ve been there. You style is so inspirational and up-lifting!!! You have a true gift. So often in life we go by without knowing the impact that we have made. I just wanted you to know that you are helping me. Keep up the good work!!!

  7. I never heard of the BEAM…I guess Matthew just had the regular kind (no leads on his forehead, just the scalp). Thanks for sharing…I’m going to forward the link to some family members.

  8. Bless her heart! I haven’t heard of a BEAM before. One of my sons had an EEG when he was first dx’d, as you say it’s not a painful procedure but it was pretty traumatic for him. Rhema is a brave girl! ((hugs)) to both of you, hope it goes well.

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  12. You are obviously christians…you mentioned the things god is doing in your lives and in Rhema’s. She is such a cute and sweet looking girl…I came across this site because I was looking at Rhema Bible Training Center. It is an amazing college teaching the word of God and applying it to your life…Now I haven’t gone to school there (i plane to) but I know alot of people that have and I have seen some incredible healings God has done due to the teach of this school….maybe check it out…I’m sure God’s report will be alot better than the doctors…Healing is ours, we only need to claim what was already given to us.

    1 Peter 2:24

    24He himself bore our sins in his body on the tree, so that we might die to sins and live for righteousness; by his wounds you have been healed.

    I have faith that you will come out on top!!!! You seem like very strong people and I greatly admire that!!!

    May God bless you and the ones around you in everything you do!!!!

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  14. Old news perhaps but these studies are also done by Bright Minds Institute on the west coast, developed along the same lines as the BEAM system. How’s Rhema these days, two years later?

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