Since the daily seizures were continuing without a respite but the trileptal had controlled the complete or grand mal seizures, the neurologist suggested we start him on lamictal, yet another drug. She said that it was recommended for children 4 and up but because V was physically big for 3, he should be fine. She also said that the most severe side effect was a rash which has been known to be fatal on a couple of occasions; if we were to start him on this, we should increase the dosage steadily so that the rash would not appear. Given that we had very little choice – or so we thought then we decided to take the plunge with lamictal. Started with administering the first dose rather shakily with the background fear of the rash.
The head drops started increasing. What I wonder is what would have happened if at the time we had phased him off of the trileptal and started the lamictal separately? We were told then that the chances of two medications working in combination were high if one didn't work standalone. However, two medications in combination also change the chemical balance and the body gets hooked onto both the medications. It is a difficult choice. It is also difficult every time one changes the medication or the dosage like we found. The way each child reacts is so very different. Nothing is known – will the medication work or not? Will it cause more damage? Will the side effects increase? It is purely trial and error and an extremely frustrating process, particularly while seeing your own child suffer. Is there an alternative? Maybe and maybe not.
At the same time we read about an effective remedy, particularly popular in Australia for some reason, called the ketogenic diet. This seemed too drastic for a three-year old. If all else fails… We decided we didn't want to go that route just then. I also looked up ayurvedic medicine, which is holistic and dates back to thousands of years back. Growing up in India, I used more of ayurvedic medicines than the aleopathic ones. Looking up the sources, there was a particular institute which people recommended to us. I was to go to India with the children in June and I thought maybe we should check it out. I exchanged emails with a person in charge of the program. He asked me for information and informed me that he would have to be admitted into the facility for six to eight weeks, that he needed to be restricted in his diet and that they would look into seeing what could be done. They had a confirmation for him. My husband and I discussed this, postponed his date twice and finally decided to abandon the effort.
Now, with the introduction of lamictal, he seemed to need a lot more sleep in the night and he was sleeping an hour and a half in the afternoon. His body seemed to need it and his energy level was way below what it was earlier. He continued to be off reading and totally on the screen. His head drops were getting dangerous. The maximum frequency was still in the mornings when he awoke and in the afternoons after his nap. He had hit his chin/forehead a couple of times on the sink while brushing his teeth in the morning. At the daycare, there was the danger of him falling and hitting his head on the concrete. So we researched getting him a helmet. The daycare director actually researched and took print outs and gave them to us. We discussed the helmets and my husband and I decided to get him a sport helmet so that it would be less conspicuous. Initially he had a bike helmet. I then spotted this girl in R's school with a different sporty helmet. The mom said it was an all-purpose helmet so we went and got that and V used it for almost two years. It protected his head and ears very well. The downside was that it was very heavy and he had to wear it everytime he was playing outside at the daycare. When he went to the park with either my husband or me or played at home in the yard, he did not wear it as we would watch him like hawks – not leaving our sight for a second so as not to let him get injured.
Given all this how could we lead a normal life? Well, we decided to do so as far as possible. Keeping his sleep times more or less constant (which we did earlier anyway), we would go out/library/park/restaurants. Our visits to bookstores and libraries were few as he was really in an off-book phase. Now, thinking back, the poor boy didn't know what was going on with his head, he knew he couldn't read. Even if he tried, by the time the first sentence or two was read, he would have a head drop, would be confused, would not know what was going on with the story, all of which contributed to his getting more and more distracted. As a result, his behavioral problems started, his attention started reducing, his self-confidence started plummeting and he stood out from other kids. There wasn't a concept of consequence in his dictionary. He couldn't understand that and didn't till he was almost seven. His awareness of the environement was almost non-existent – the drugs probably do that – suppression. What we didn't know at the time is that his speech issues had also started – very common with epilepsy and AEDs. Not just speech as in talking but speech processing, which continues to be an issue. If someone said "Stop" not only did he not understand that stop means stop but to even register and record and process that one word took time in his brain. How then could one be expected to deal with this situation and explain to people around that these are issues that he deals with constantly?
In the meantime, we have to say hats off to V for continuing to be a happy child and constantly smiling. He was an instant hit with the adults and still is. He didn't have friends and still doesn't really have friends.
Later, as his lamictal dosage increased, we also started dealing with double vision problems and this eventually led to his getting his glasses.
Also, V's sleep in the night was badly impacted. Not only did he never sleep peacefully, he was having these grunt seizures in the night. Often he would get up in his sleep and yell. His sleep was really disturbed. While falling asleep, he would have those grunts before he was really asleep. I wasn't sure about his yelling at the time. Monitoring his night movements became as important as his daytime movements. All along I was hoping – this medicine will now work and he will be cured; tomorrow I will wake up and will not see any of these grunts or head drops and he will be just fine. So much so for optimism!
No comments:
Post a Comment