We are certain Eliza was having seizures long before we recognized them. I remember when she was two asking the
Neurologist if these funny episodes we were seeing were seizures. He dismissed them away and reassured us they were
not seizures. What were we seeing? Her head dropping back or to one side like she was falling asleep
only it would happen repeatedly while we were feeding her. At times she would shrug her shoulders and tighten.
Upon changing position such as picking her up out of the car and standing her on her feet she would shake and go limp for
a moment. Since were assured these were not seizures by our Neurologist, we made many excuses for the behaviors.
It wasn't until we attended our first Angelman Syndrome Conference in the Summer of 2007 that we got affirmation that
these were indeed seizures. The conference came on the heels of a few episodes spanned out about 6 weeks apart where
Eliza would wake up in the morning gagging. She would gag every hour or so, was very sleepy and appeared to us to be
fighting a flu bug. The gagging would last an entire day but she would make a completel recovery by the next morning.
We began to suspect these might be seizures after several episodes seemed remarkably the same and our other two children weren't
affected by this "flu bug".
I stood up at the conference and posed a question to the doctor who was an expert in seizures. Immediately everyone
confirmed our worst fear, OF COURSE these were seizures and WHAT ROCK HAVE YOU BEEN LIVING UNDER?
After returning from the conference, her seizures snowballed and progressed to gagging along with eyes dilating,
shaking or trembling, sometimes followed by her head turning far to one side. She would then sleep until the next seizure, anywhere
from 15 to 45 minutes later. These seizures would last from 30 seconds to 3 minutes but on average about 2 1/2 minutes
The first time this happened we were so scared. We knew for sure these were seizures and didn't know what to do
for her. We didn't know if she would come out of the seizure on her own and what kind of harm it was doing her body.
We immediately took her to the ER. In the course of about 4 months, we made three trips to the ER. Each trip
was a teaching experience for the hospital staff who knew nothing about Angelman Syndrome. Our final visit to the ER
was on a Christmas Eve and Eliza had to be airlifted by helicopter to a childrens hospital where a staff Neurologist could
prescribe an anti-seizure medication since the Neurologist Eliza had seen since her first ER visit was out of town for the
holidays. What a terrifying feeling watching that helicopter take my child away, alone. I wasn't allowed to travel
with her so Tim drove the two hours away to the hospital while I returned home to our other two children. Each hospital
stay resulted in three to fours days of agony. Eliza's seizures would stop after they administered a strong medication
but she would not be allowed to leave until the medicaton wore off and was seen by the Neurologist. Try keeping an active
child, who cannot sit still and has a strong desire to always be walking and moving, to lay still in a hospital bed while
hooked up to an IV. Thank goodness for good friends who kept me company and walked the halls all hours of the night
trying to wear her down!
We began to notice the pattern in her seizures and they didn't deviate too much. Always the same type of seizures
and about the same length of time. We knew what to expect, how to handle them and together my husband and I learned
it was much easier to attend to her seizures and medicate for the breakthroughs at home. Over time we became used to
them and they were no longer riveting or frightening but a normal part of the disorder that we adjusted to.
What has helped us through the years is to write down the time the seizure occurs, watch the clock or put on a watch
with a second hand and take note of the length of the seizure writing it down afterwards, and to note the type or what we
saw happening during the seizure. We noted the date on the calendar each time she had a day of seizures and this is
how we found the pattern.