When I started writing this blog, I wasn't sure of how much detail I could put down. My intent is to help someone out there who might be going through a similar situation. It is way easier to put things down and talk practically about it now that the situation is better. At the time the only concern was his continuous seizures and how we could help make it better.
The day after the "make me feel better" he was looking and feeling miserable. If R were not so independent at such a young age, it would have been a disaster. Also, she would go to the same daycare after school with her good friend. She couldn't figure out what was going on and the one time I tried to tell her, she blocked her ears and said, I don't know what a seizure is, I don't want to know about it or what it does. Looking back I realized that she was close to six which is still little, though we might have treated her like she was older and she was really upset about her little brother, but she didn't want to admit it. Hence her shutting out the truth. She has been a source of tremendous support for him. When his speech got impacted and on several occasions I might have had a hard time figuring out what he was saying, she would immediately translate and she could really figure out what he wanted.
My mother was arriving the next day which was a source of huge excitement for both V and R. I took them to the airport in the afternoon, V in his drugged state as I remember. The one picture at the airport of his that I can recall in detail while we were waiting is of him glued with his nose to the window watching the monorail go past. That night was probably the most painful. He barely slept, woke up dreaming about fairies, kept saying shoo away the fairies, and imagined the tree outside our room to have fairies there. He was awake from about 2 on. He was miserable. The dosage has been upped. I was to learn later that the AEDs can cause hallucination and can impact your sleep both ways – too much or too little sleep. He slept at about 8:30/9:00 the next morning from sheer exhaustion.
All along through this, my only outlet was running – I have enjoyed running since I was a little girl, had kept running in between my kids as well and had taken it up again seriously after V turned a year. After V's seizures, like I said, I wouldn't let him out of my sight. When I finally had started leaving him at the daycare for a few hours four days of the week, I would run in the park right next to the daycare thinking that they might call me any moment now – that I couldn't leave him. Alternatively, I would run on the treadmill at home – home was just a 10 minute walk and a 2 minute drive from the daycare. Like I had said earlier, that was second home to him – the staff had known him since my pregnancy and were very, very fond of him and his sister. That made a huge difference in giving me my space and time that I didn't realize I needed. I had my regular park friends whom I would come across and I couldn't talk straight to anybody those days about what was going on with him.
Anyway, the neurologist said that it was alright for him to sleep this way – didn't really give it much thought to the hallucination. The grunts had continued and she didn't think there was anything to that either. By now I was convinced that they were a form of seizure. Two days later he had another complete seizure. This was a weekend and I called the neurologist's emergency. She agreed that this medication(Tegretol) had stopped working and that we should phase that out in two days and start immediately with trileptal. Again something I would learn later – the medications work upto a point. With some children, they continue working just fine with the same dosage and medication. With other children, when they fail either in dosage or content, the chances that anything will ever work is almost zilch. It is a cycle one goes through – works upto a point, then stops. The other fact is that even in these four years, there are several other children's AEDs that have been put out in the market. At the time there were a few choices way better than a few years prior to that but not as many as now. The dosage is measured by the child's age and weight and needs to be gradually increased. One cannot see the effect right away – it has to take its course – that is the hardest part – when is the optimal time? How do I know the medication is right for my child? What about the side effects? What else gets impacted? How long is this going to continue? That and more are questions that nobody has answers to. What are the short and long term consequences on the brain? Again, at the time one isn't thinking about that as much as wanting to see your child stop suffering. As V's school psychologist recently put it "My job is to see how everything fits in together; to see how his brain works given the bombarding that his brain has received".
No comments:
Post a Comment