Seizures, seizures, seizures

At first, Taylor was experiencing absence seizures. These manifest as a very short episode (as short as one or two seconds, sometimes lasting up to 10 seconds). She would simply stop and stare off into space. She would then continue on with whatever it was that she had been doing previously, as if nothing had happened. At worst, she would have more than 100 absences a day. I actually tried to count and record her seizures. I stopped when we reached 100 and it was only 4pm in the afternoon. Her seizures would increase in number in the late afternoon and early evening. 100 was a ridiculous and distressing number, I had no interest in continuing the tally.

Taylor's absence seizures continued to get worse and we were soon told that these had developed into Atypical Absences. Atypical absences, are similar to absence seizures except they are longer in duration and can involve loss of muscle tone. In Taylor, an atypical absence would begin with her rapidly blinking her eyes, then her eyes would roll upwards while her eyelids continued to flutter. Her head would then drop backwards and the rest of her body would follow. She would sometimes hit the floor. She would lay there, while her eyes continued to flutter. After 20 - 30 secs, she would come around, looking completely confused and sometimes she would burst into tears.

Taylor has also suffered a few tonic-clonic seizures. These are frightening to watch. Tonic-clonic seizures were once referred to as grand-mal seizures. During a tonic-clonic seizure, the person can experience a period of stiffness and rigidity (this is the tonic phases) followed by rhythmic convulsing, shaking and tremors (this is the clonic phase). The person will be unresponsive, may bite down/clench their teeth and can foam at the mouth. The lips can turn blue/grey in colour. After a tonic-clonic seizure, a postictal period is common: where the person is exhausted, sleepy, confused and may experience muscle weakness.

Children with Landau-Kleffner Syndrome also suffer from a specific type of seizure activity known as CSWS: Continuous Spike Wave during Slow Sleep. This occurs when a person's brain goes into a seizure like state for more than 80% of their sleep time. This is very difficult to control and it also very damaging. It is this type of seizure that robbed Taylor of the ability to comprehend auditory information and left her unable to speak.

Taylor's seizures were so debilitating, that she lost much of her fine motor control and even her gross motor skills were also compromised. She was unable to hold a spoon and feed herself. She had trouble walking across a room. We had to go back to using high chairs, that we could strap her in, so she wouldn't fall out during meal times and we took her everywhere in a pusher - this was much safer than allowing her to walk. If she had a seizure while walking, she would often hit the ground heavily, causing injury or would walk into a wall, during a brief period of unconsciousness. Her face and body was forever bruised, no matter how careful we were.

Taylor's CSWS has caused significant 'damage' to her temporal lobe, causing auditory agnosia (neurological deafness). Since gaining seizure control and clearing her EEG of CSWS, we have seen her improve significantly. She can now understand some auditory information such as single words and some basic sentences. She can recognise a variety of environmental sounds and she is beginning to speak again. However, it appears that the damage is done. She has been left with a severe language impairment.

Although Taylor's receptive and expressive language has been severely impaired, Taylor continues to make huge gains in her communication, using Auslan (Australian Sign Language). Her ability to process visual information, is thankfully intact.