Weaning the drugs

       When the daytime seizures stopped in December 2006, we decided to start with slowly weaning one of his medications from about the second week. He was on both trileptal and lamictal but the latter was our least favorite given the nature of the side effects he had experienced. So why not start with that one? I have to say here that neurologist#1 when she saw V after about a year and a half said to me to keep the same dosage since he wasn't experiencing the seizures anymore and that it was great.

            However, if the medications really had done the job, the effect would not have been visible after so many, many months and I was very sure that we should start the weaning him off the drugs starting with lamictal. Each of those lamictal pills is 25 mg which might seem like really little but they are potent. Each weaning was done in decreases of 12.5 mg no less than six weeks apart. It was a very long and slow process and took a whole year. Through the year we didn't lose hope, nor did we lose faith that we were doing the right thing for V. Also, the school staff never once interfered with what we were doing, nor asked us to stop the process.

            The first two decreases were the worst to deal with and it got progressively better. About two –three weeks after the first decrease his kindergarten teacher contacted me about a meeting. I had just started with a new teaching job and it was almost impossible for the two of us to come up with a mutually convenient time and she decided to go ahead and meet with my husband. She and V's aide (another favorite person who continues to work with V at home even now) met with my husband and let him know what was going on in school.

            Basically, he was getting more aware of the environment. He was also getting withdrawal symptoms – he had been on this level of medication for a while and it was like a drug addiction. The body craved for that same amount and did not get it. He was showing his frustration in different ways. His behavior was negatively impacted. He has started with these sounds that seemed like he was clearing his throat - these were particularly apparent when the class was working on a silent activitiy. He would do the same at home.

   The sounds got progressively less and stopped over a period of time but it took a few months.

           At the same time, his aide and teacher noticed that there was a marked difference in his focus, attention and memory - for the better. If, at the time they had not reassured us that it was alright, that we needed to look at the long term benefits, not the immediate ones, I don't know what our next step would have been. However, with all this support that we were getting, we could actually go ahead with the weaning; only it had to be done so slowly so that his school life would not get severely impacted. Every time we went through a weaning, the period of 1.5 to 2 weeks after the decrease was the worst – he would get very emotional, throw tantrums, he had no idea what was going on. However, constant communication with his teacher and aide really helped to let them know what was going on. Also, it was always timed with a big break, or a long weekend. This helped in the fact that he was always with me during his worst period of the weaning.

            In January of 2007, V was completely weaned off the lamictal. Ever since, his concentration has been steadily increasing, as has his attention span, memory(both long and short term) and awareness of his environment. He has been able to absorb so much more information it is as amazing as when a child learns to talk and I listen to a question he is asking me – is this truly the same boy? Like I said, he had very little control on his brain and actions – he had become a different boy – and he is slowly but surely getting back to the book-carrying two year old boy I knew.

            After about two months of completely weaning V off of he lamictal, I wanted to start the weaning of the trileptal. Here, my husband and I disagreed. He thought we should wait. I thought it was fine as long as it was slow and timed with spring break two weeks out from the decrease. So we started with the gradual decrease of the trileptal. He is now at 75 mg. of the medication down from 375 mg. It is still a slow process but it is getting there. I expect the last one to be difficult.

            With the last two reductions of trileptal, his awareness of the environment seems to have taken an exponential leap. He is constantly asking me questions, meanings of words – it is like a whole new world has opened up for him. In fact, his old aide/current tutor said sha actually had to turn off the NPR channel last week because V was asking her sooooo many questions!!

            He does have his annual appointment with the neurologist next month and I'm not sure what we have to say to each other but I will go through the routine as best and politely as I can. I am certainly not looking forward to it.