To think that all this was happening to me and my child – well, it was really hard to digest. One hears of things happening to other people, but however much one tries, it isn't the same as when something is happening to you is what I did discover. I was losing it. This is something we had no control over. It also wasn't something where we could see the result right away.
Now, it so happened that V's four days of daycare were every weekday other than Thursday. He had had his first break from the medication on Thursday. Thereafter, the next three Thursdays he had bigger episodes of seizures. It was kind of obvious now that the problem wasn't going to go away magically and not having the right knowledge, I would rely on the pediatrician. After two repeat seizures on Thursdays, she said that her knowledge would only carry her this far and we would now need to see a neurologist. Not having needed to know who or what a neurologist was thus far in life, it was another adventure. Well, she suggested one and in the meantime, said she would refer us to another well-known neurologist whose appointment would take longer. Not knowing what my choices were, I just complied. I was at a complete loss and just wanted to go along with anything that was being suggested.
In the meantime, my mother, who would come every year to spend time with the kids, said she would come in March. She had booked her tickets and the children were very excited about it of course. I had no idea just how much help she would be this time around – way more than when she helped with my post-deliveries and other things. She was my life-line those three months and I would have most certainly found it almost impossible without that moral support.
So, come February 26th I was off to see the neurologist – a good 40 minute drive. That morning something strange happened. I was giving V his shower and had got him out of the tub. He was standing on the potty seat while I dried him and he began to make these strange sounds. My heart started beating triple fast – what was that? I called to him – what's going on? He couldn't figure out himself and got worried. He panicked more with my stress. The poor boy – he used to love the water and the bath tab and his swim lessons – everything was stopped for fear that we didn't know what was going on. He would be put in an inch of water in the bathtub and removed within minutes with one of us monitoring his every move. Prior to the changes, he had started having his own shower. Little did we realize that this was a very small price to pay.
He then made those grunting sounds a few times between the bath and the time I got him to the car. I thought back several times to that day wondering what had changed, what could have happened? I learned later that several AED's (Anti-Epileptic Drugs) can change the very nature of the seizures that someone experiences. The grunts were one of several types that we would see with V. Could I just go and unplug the medication? No.
That day's appointment with the neurologist lasted over an hour. V sat and played quietly with the different toys while she and I talked. She then decided to up the dosage of the Tegretol as he wasn't experiencing any side effects and we could do so. Throughout that period he didn't make any grunting sounds. So when I had brought it up with the neurologist, she said we could ignore it. In my mind it felt like either he was holding his breathe or it was a seizure. The moment I went back to the car, V made that sound again. It would be a bunch of grunts one after another for a few seconds. I rushed back to her office but she again said that it didn't seem like it was anything important. I had to trust my gut feeling. Throughout the drive back I kept monitoring him through the rear mirror. He had those a few times. The grunts continued that day and with the increased dosage, V must have been feeling really bad. That afternoon when we were lying down on the sofa and watching a DVD (that became V's security – watching Hindi songs on TV), V said to me, "Mama, give me something to make me feel better". That just broke my heart. I called his pediatrician – not knowing whether or not it was a breathing problem. She said to monitor him and call/come if needed. He was drugged the entire time.
That was the beginning of what was one big nightmare for us – it was something that would keep me worried for months on end and wonder when things would ever get better. I didn't know that I could ask for help other than a doctor, I didn't know where to turn to or what needed to be done next – it was very difficult to think straight when the immediate concern was just to stop this pain that he was going through.
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