In the meantime, I started reading on basics of a seizure – what is a seizure? Why does it happen? What is epilepsy? What does it mean? All along I kept thinking that this is something very transient. It will go away tomorrow. I had several questions but no answers.
Well, after juggling with how to get V to like swallowing his medication and succeeding, we thought everything's fine – well, almost. Other than the fact that I would not let him out of my sight, no matter what he wanted to do. I insisted on driving the SUV as it had the rear mirror where I could monitor his every move. I had to hear his voice, I had to check if he was breathing. I was going insane. He was his usual happy self and never did give a clue as to what might actually be going on in his brain. On January 16th, he had his EEG at the hospital. The woman was very nice. For the EEG, V had to be sleep deprived – this was the hardest part – having him stay up late, waking him up early so that he had just 5-6 hours of sleep. I now think back and wonder how I did it – it just had to be done, no choice.
I don't remember anymore when exactly we were told the results of the EEG but they were really normal. The best part of the EEG was sleeping with V during the process. I had to lay down with him and of course, I too made up for my lack of sleep and stress.
After ten days of having him home, right after the EEG, my husband insisted we send him back to daycare to his four day routine. I was reluctant but am really glad I gave in because both V and I would have lost it, with me monitoring his every move. At night, I would check in constantly to ensure that he was breathing – that is something I will still do periodically. Ever since, he has slept with me so that I can monitor his night movements as well.
We tried to lead as regular a life as possible, ensuring that we were medicating him at the right time and continuing. Through all of this, R. was super good. She grew up really fast though and from being a five year old to a few years older mentally.
For five weeks, the medication worked like magic. I was really happy that this is all it was. Then on February 5th, a good friend of mine from India was visiting. We picked up R from school – it was a Thursday so she finished at noon. V, R, my friend and I enjoyed our lunch at CPK. We came back and R and my friend were playing, while V wanted to watch the songs from "Kal ho naa ho" – this movie always brings to my mind this bad time period with V as he always watched it and it still makes me sad. So he was lying down on the sofa, watching, saying something to me and stopped mid-sentence. His eyes were frozen, he was lost – I knew that it was another seizure. How could this happen? He was on medication, he is supposed to do well. I wanted an instance fix for him. I didn't realize how complicated the brain is and what really is involved in fixing it – nobody knows how to do it to date and there really isn't a cure. I had to find out the hard way. Well, he felt drowsy after that and was otherwise okay the rest of the day. On Friday morning, soon after he woke up, he froze yet again. It was the same as the previous evening. It was time to drop R to school which we did and went straight to the clinic.
The pediatrician said that we needed to check the level of medication in his bloodstream, which had fallen and we needed to up the dosage of the tegretol a little. All this was strange talk – up the dosage, a child's metabolic rate – the only medication I had known until then was Tylenol that too only when it was an emergency – give it and one would see the effect right away. The other illness my kids had had until then was stomach flu – well, stick them on the brat diet and even if it might a few days sometimes, they would be just fine. I had been so very lucky with respect to health. This was completely foreign. And to think that a seizure is just an electrical impulse in the brain. Why can't the cause be known?
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