12 Sept 2012

Charlene did her eeg at Nuh this morning. We thank God that we managed to capture data of her sleeping (with and without cpap) and awake. She had a few strained faces and turning of head. The Nuh eeg technologist is a really nice lady. She would answer the questions that we asked. When we voiced out that we aren't sure if those are fits, she said that it doesn't seem like it.

Her interpretation is confirmed by the neurologist. Prof Ong explained to us that those are not real fits. Basically, Charlene's brain is full of activity even when she is sleeping. Her brain is overworked so much so that it has to force shut-down. An analogy would be when we open too many programs on the computer, causing the computer to hang and force shutdown. This explains why Charlene is so tired all the time as she is not truly resting even when she is sleeping. Even though they are not real fits, but because they happened all the time, it is damaging to the brain.   

Though this may not seem like good news, but we are thankful that for the first time, we finally have some knowledge of what is happening to her. The plan is to increase the dosage of epilim (one of the anti-epilectic med that she is currently on) to an effective dosage and then do another eeg to see if there is any improvement. We are going to increase the dosage very slowly; 0.5ml every two weeks so it will take months. Please pray for Charlene that the effective dosage of epilim will be effective in controlling her fits. 

In the event that the effective dosage of epilim proved to be ineffective, Prof Ong suggested adding a new medication that Charlene has not tried before (he said to try those that are less drowsy first). 

For the past few days, Charlene has been more responsive and the increase in muscle tone has been obvious. She is better able to hold her head when sitting and even when in prone. We thank God that we could remove phenobarbitone from her life forever.

Charlene sitting on her own for 20 mins