Tuesday, December 21, 2010

Really? Benign what?

After Emma had crazy episodes on both Labor Day night and Thanksgiving night, our pediatrician decided it would be best to get an eeg. A SLEEP DEPRIVED eeg.  That means we had  to get her up at 2am and keep her up until her appointment at 2:30pm and then just expect her to automatically fall asleep right when they told her too. Well, she didn't. It took forever to get all of the little nodes attached to her head (although he was quite proficient at it and used kid friendly terms like "cereal bowls" and then he filled them with "peanut butter and jelly". So that was helpful.) And then it took even longer to get her to stop whining/crying and to fall asleep. Then, she only got to stay asleep for about 5 minutes (long enough for them to determine that she was indeed "abnormal" - Thanks, doc! That was helpful!) And then they woke her up and we went home scared and confused only knowing that she was "abnormal" and would need to be "medicated for her own safety". Then, after the tech promised he'd have the results to our pediatrician's office the next Monday, we finally got it a week and a half after we were supposed to get them. And we got a diagnosis of benign occipital epilepsy
Here is a description, just in case you wanted one...
Early-onset benign epilepsy of childhood with occipital seizures is a distinct form of occipital epilepsy—seizures that originate in the brain area responsible for vision. The peak age of onset for the early form is between ages 3 and 5. The late form (Gastaut type) has a peak onset between ages 7 and 9.

Seizures are infrequent with two-thirds of seizures occurring at night, usually shortly after the child falls asleep. The episodes typically last less than 10 minutes, with vomiting and gazing toward one side, and often evolving to rhythmic muscle contractions on one or both sides of the body. Episodes occur with or without impairment of consciousness. They are occasionally triggered or aggravated by turning off lights, going from lighted areas to dark ones, or from dark areas to light ones.

Some children may experience headache and visual symptoms—colored shapes, flashes of light—in associated with the seizure. The condition is sometimes confused with migraines, as these headaches are common either before, during or after the seizures.

The prognosis for early-onset childhood benign occipital epilepsy is excellent with most children outgrowing the condition after several years.

Children with this form of epilepsy have a genetic predisposition. The syndrome represents about 3 percent of childhood epilepsy, with a somewhat higher incidence in girls than in boys.

So that is relatively good news, in that she will grow out of it and that it is benign. Our next step is to get an MRI, which we hope to do before the end of the year to rule out something worse that I really don't want to think about. So I'm not. ;)
Here she was pretending to sleep. If only she would have really gone to sleep so easily. ;)
 She did ok once she figured out that it really didn't hurt getting the "cereal bowls" glued to her head with "peanut butter and jelly". (Before we tried to make her sleep!)
 This was after she had slept for 5 minutes and then he removed all of the "cereal bowls". We were literally combing glue out of her hair for a week!
So, we will keep you posted on the MRI and we are definitely praying for a FAR less eventful 2011!!!


  1. Oh My Goodness Leigh! What an ordeal for you all. I used to work as an ICU/PICU nurse and I remember that glue being the worst to get out. I used an adhesive remover on my patients hair (that stunk) to get it out. They were sedated and intubated so I don't think they minded too much.

    I will be thinking of you and please update us after the MRI...and YES A MUCH LESS "lively" 2011!!!

  2. Sweet Emma - - -
    UGH! So sorry you and she had to go thru that! The dx sounds good - well,not good but you know what I mean!

    Thinking about you and praying for a peaceful 2011.

  3. Praying for wonderful news! Keep us posted!