15 Jan 2013 - Video EEG results

Potassium bromide was weaned off on Christmas day, based on the  neurologist's advice. Charlene has been on 1 anti-seizure medication since then.

We noticed an increasing episodes of seizure-like events, where she will scream loudly. Some of them look like fits as she will stiffen her body and become inconsolable. Others look like she has difficulty controlling her emotions, cos when we picked her up, she will stop immediately. Another observation is that Charlene was constantly tired and slept for prolonged hours. Her sleep was also affected by sudden awakenings. She could at best sleep through 3 hours without any disturbances. Concerned with the increase in number of episodes and her sleepiness, we called the hospital to arrange for a 24 hr video EEG. The appointment was scheduled on 14 Jan 13, and we stayed overnight till 15 Jan 13.

A video EEG records the brainwaves of Charlene for 24 hours, with a concurrent video recording. EEG is the best way to determine whether an event is seizure or not. With the video of Charlene behaviour, we could then learn to see which behaviours correspond to actual seizures. That will allow us to better track the effectiveness of the medication.

The results showed that majority of the episodes are fits and it is the fits that disturbed her from her sleep. She is currently having an average of 2 seizures every hour. That is an increase of the number of events prior to the cutting of potassium bromide. The doctor matter-of-factly said that this showed that potassium bromide was probably effective in controlling her fits to some extent.

Knowing that the number of seizures are high, the doctors recommended 2 options.We could choose to put back potassium bromide, but it is a tertiary ("last-defence") drug with serious side effects. The other option is to give Charlene another type of anti-seizure drug. It is unknown whether the new drug will be effective, but it is clear that the drug is less sedative for her. What it means is that Charlene quality of awakefulness will be better.  In fact, after the removal of potassium bromide, we could see Charlene's muscle tone improving; she could sit leaning on me and hold her head by herself for almost 25 minutes. Also, her swallowing has improved and hence she is accumulating less phlegm. She also shows her capability to learn new things like crying until she is carried. The doctors said that her brain is able to learn because she is no longer sedated heavily.

Weighing the costs and benefits, we decided to opt for the new drug.

Please pray that Charlene will not have any allergy to the new medication and that the new medication will be effective in controlling Charlene's fits. Please pray that her major seizure episodes (last more than 15 seconds) will be reduced gradually and eventually eliminated from her life. Pray that Charlene will continue to develop cognitively, and that she is protected from the destructive effects of the seizures.