17 September 2012

Myoclonic Seizures


We spent the weekend in hospital, and today being a Monday, they were suppose to schedule an EEG for Vera. Beth called me at 8am to say they were already preparing her for it.

We were expecting perhaps by end day, but there was just one slot and Vera got it. We would have had to wait until Friday for the next available slot. 

Vera undergoes her first EEG, which reads her brain activity. By reading the waves, doctors can ascertain which part of her brain is showing "irritations" which predisposes her to fits. 
They recorded her brain activity while awake (10 minutes) and then gave her some sedatives to put her to sleep to get another 15 minutes of activity while sleeping. Because the activity that causes fits is usually in the period going into sleep and coming out of sleep.
Waterfall of wires to plug us into the mysteries of the brain.
Within minutes, the Neuro team was in the room to answer all my questions and bring clarity to the matter. Her neurologist Dr S came, read the EEG, saw the video I posted and shared her observations.

The results show 3 areas of her brain with abnormal activity:

a) a point on right side which presents as either muscle pull at mouth or hand jerks;
b) a point on left side
c) a point at left occiput (back of head)

Dr S confirms that the video shows a cluster of myoclonic seizures as well.

Her plan is to start her on Epilim. And this will be at least for a period of 2 years. If she remains 'seizure free' for 2 years, then can we start to wean her off the medication.

Her dosage is currently at 1ml twice a day. They will progressively up it to 3ml twice a day, over the next few days, to gradually get the body up to the required dosage for weight. The side effect of any fit medication is drowsiness. So we pray that the doctors will find the right dosage that would be just enough to control the  seizures without making her too dopey while she's awake.

I do still want my excitable little girl : (

I thank God for the speedy team effort this morning, diagnosis and medication. I will write more later about the excellent team at NUH. Vera is now drugged out by the hydroclorate, which was the medication I had intended her to get when I checked her in. I know that with this, she will have a very good long sleep and really get the rest that she needs. It is a short-term medication, but we've seen how helpful it is in resetting her sleep clock.

Meanwhile, since she is well-monitored in the ward, the Respi team will attempt to titrate her from 13/7 up to her recommended setting of 16/7. Given our past 3 failed attempts to even reach 14/7, this leap, if successful, will be nothing short of a breakthrough.

So many miracles already have shown themselves through this little girl, from the day she was born. Her chiropractor said to us, 'She is a miracle'. I now know she is a gift from God, so bursting with multiple miracles that I just cannot not see.

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