Where to begin…

In August of 2008, when Emily was 5 years and 5 months old, she had the first night time seizure that we know about. At about 3:45 a.m., Keith's folks called to say that during her sleepover there, they heard an unusual sound from her room and were panicked over the fact they could not wake her. They called 911 just before they called us. The medics said they often see febrile seizures in children Lily’s age and this was most likely the cause. They took her to Children’s Hospital in the ambulance where she was given an exam and an EKG. Emily didn’t like the EKG experience, and the tech got really annoyed with her over it, which seems odd for a hospital that serves children. The perplexing feature of this seizure was that she never appeared to have a fever, and was in fact quite cool during and after the incident. A follow up visit to the pediatrician and reading on the internet steered us more toward the diagnosis of benign seizures, which are relatively common in children under age six. As long as they don’t have lingering effects such as slurred speech or learning delays, or last 3 or more minutes in length (Emily’s are around 30 – 40 seconds), they are tough to witness, but otherwise harmless. So we went on…

In October of 2008, at 3:30 in the morning, Emily had another seizure, this time in our house. We waited to see if it would last before calling 911, but it ended just after 30 seconds. We called the medical center the next day, but an appointment didn’t seem to be called for and the event was noted in her file. She had another in the middle of the night on January 7^th, 2009, and then again on February 7^th. We called those in as well and were advised to come in a few weeks early for Emily’s 6-year check-up. It was around this time we realized that her handwriting had started to regress and she was not as good about her reading homework. At this visit, we were told that she might not grow out of it for a couple more years. Also, on the slight chance that this was not the typical benign seizure condition, we would be referred to the neurology center at Seattle Children’s for an EEG. Following this doctor visit, she had two more night-time seizures on February 20^th and 21^st. On the 22^nd, her behavior was beyond unruly, and beginning that night, she refused to go to sleep fearing “bad dreams”. Up until this point, we had no indication that she was aware of anything unusual. She spent the better part of the week gradually rebuilding the minutes of sleep. In all, we were sleep-deprived for a full week.

March 11^th was the day for our EEG so we began reading up. We were to wake her up at 2 a.m. and keep her awake until her appointment at noon. Since her seizures took place in the night, it was essential that she fall asleep during the brain scan. Laura's Mom and Dad were visiting so we all took shifts staying up with Lily. Everything we read and were told indicated that all the data would be collected at the appointment, but that we would have to wait for it to be analyzed and then a report sent to our pediatrician before we could have a meeting to have the results explained. However, the remarks of the EEG tech began to explain some of the magic that is our Emily. He asked if she had had any seizures during the day, to which the answer was “no”. He replied, “but she has absence seizures, right?” ……huh? We had never heard this term before, ever. He says, “you know: checking out for a few seconds, maybe looks like inattention, staring, or daydreaming…people say she ignores them…lots of kids who have these night-time seizures also have the absence seizures during the day”. Yes!!!! This is our kid exactly. She seemed so disconnected as a toddler, that by age 4, we had her tested for autism. (that experience will have to be another segment) This was a revelation for us and we began noticing these moments in her daily activities. We did not get our appointment to go over the report, however, before she had to go in to see the pediatrician with a case of strep throat a couple weeks later. At that visit, Keith was told that “Emily’s EEG was abnormal and we should next get an MRI to look for an anatomical cause”. Knowing that something was wrong but not having any idea what was torture for a couple of days. Children’s called to set up an appointment with a neurologist, and then we would go from there…that was a little better.

On Monday, April 6^th we had our appointment, but not before she had her 7^th seizure (of which we are aware) at around 3:00 a.m. This meeting was extremely great and extremely terrible at the same time. Two great things right off the bat were the format of the appointment (we discussed the history with two doctors and they both examined Emily…it was like getting two chances at the same experience) and that she could hang out in a play area away from our discussions (she’s getting a little worried about what might be wrong with her). The terrible moments came when we found out that she does not have the common, benign seizures that will soon go away, and that her rather rare disorder has probably kept her from processing any learning during sleep (the primary time for her brain to learn) her whole life.

Her EEG showed that her brain waves are interrupted with a blip or “spike” at the rate of 12 to 14 per minute during the day, and that these spikes increase to 4 or 5 per second during her sleep. While her body does sleep, 85% or more of her nightly rest is disrupted by this increased brain activity. This later feature would keep her from entering REM sleep, processing the information of the day, and even dreaming. It’s when the spikes come at a much faster rate that the seizures occur. We don’t know why this occurs as infrequently as every 6 to 8 weeks. The doctor conceded to our guess that it may have to do with being overtired, but she’s not sure. (Her last seizure came at the end of an 8-hour travel day during which we returned from a week of fun-filled vacation in California.)

The Neurologist is confident that we are dealing with a condition known as CSWSS for the continuous spike and waves discharges during slow sleep. While we do still need to have an MRI to rule out any anatomical problems, she is expecting not to find anything. The EEG showed that these spikes start at the back of Lily’s brain, on both sides, and spread forward, involving nearly every part. An anatomical anomaly such as a tumor or injury site would show on the EEG as a much more localized reading.

The good news is that the neurological community is familiar with this condition and there are several medications to treat it (and we’re up again). The trick will be to find the right one for Emily. The one with the longest track record, the one that works best for all kiddos, is rather threatening to her internal organs, especially the liver, and requires regular blood tests to monitor this threat. Also, she would likely have some hair loss leaving her hair quite thin (back down). Keith says, “what else is there, 'cause that’s not going to work for us”. The next option would be a drug called Keppra, which is not threatening, does not require blood tests, works in a large percentage of the kids, has a common side effect of hyper activity, but has not been around as long. That was the prescription we had filled, and began the first dose the next night. Wednesday morning she began the most thrilling daily ritual (for us) of reporting her dreams. We are quite certain that this is a new experience for her.

Lily was a real trouper during the entire procedure. The red marks here are just marker, to help place the electrodes.








The facility at Seattle Children's is great. She got to bring favorite dvd's from home to watch.










The technician was a real pro. So knowledgeable and just great... not only with Lily, but with Mom & Dad, too.










30 wires in all were attached to her scalp and face. We refer to it as her "rainbow spaghetti hair". All the gauze is just to hold everything in place.









The brain waves on this screen should be smooth, slightly wavy lines. The spikes are very clear here.









We don't think she was crossing her fingers for luck, but rather just passing Teddy's ribbon through them. She's done that her whole life.