The journey with lamictal begins

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!

The MRI

The MRI which was ordered on January 2^nd was scheduled for March 16^th so the day arrived with V being on Trileptal now and Tegretol being a thing of the past. The complete seizures also a thing of the past but the constant grunts/head drops/absence seizures being a daily occurrence. With this came changes in V's behavior and just himself. The teachers in the daycare noticed the difference – his two year old teacher whom he was really attached to could see the marked contrast from just two months ago as well as his lack of love for reading. He continued to be a happy boy though and fortunately, since he was otherwise healthy, he continued to be fine in other respects.

            The MRI had to be done under sedation. This was obviously a big deal and we did it such that we could still drop R to school and then go. The staff was fantastic but to see V going through the sedation – then he was lost to us when he was wheeled to the room till they brought him back. He was talking to the staff all along on his way in. He was not in the least bit scared and the staff explained every step to this three year old so that he knew exactly what was going on – the respect that the staff have shown to this child is something that is really touching and I really feel like that made our hospital visits something to look forward to. When in recovery, V could have juice that they gave. Being a children's hospital recovery room, the room was full of little ones all around, including a nine-month old at the next bed who was having her third liver transplant. That was sad consolation that our problem was so tiny in comparison.

            The pediatrician called with the results and said that it showed an abnormality in the right temporal lobe of the brain. She showed me the pictures so that I could understand what she was talking about. Both she and the neurologist said that most likely but not definitely was that the cause of his seizures. By then I had read that the cause is unknown for more than 90% of seizures. 

            The recommendation was that we do a more detailed MRI where a fluid is injected into the body and its path followed to the brain so that they could focus on the specific area in the right temporal lobe. Wasn't I learning more about the brain and I was getting more and more interested. At the time I had to take up a major, I never wanted to do medicine.

            In the meantime, life has to go on – V got hooked onto watching more DVDs as that became his source of security. He also got hooked onto working more on the computer. The other thing we started noticing was that he was able to identify the letter "s". He would realize that the letter was "s" but would remember it. He was unable to identify, remember and recall other letters. I didn't give it much thought – after all, he was a boy and he was three – he was very different from R from the time he was born (even before). So why give it more importance? The beginning of just a few issues. He didn't know his colours either and the director of the daycare who had dealt with infinite kids had given me several examples of different boys who didn't know their colour labels until after they had turned five. So it obviously wasn't a big deal. In the face of his daily seizures, nothing was a big deal. 

Trileptal and miscellaneous

When we started trileptal and stopped tegretol there was one full day on that Sunday when I didn't see any grunts – that was definitely a good sign so I was hopeful that it would all be alright. Not giving him medication was not an option at the time as originally he had had two seizures within four days which were not febrile (due to high fever).  So, off we started by giving him a small dose of trileptal and increased it gradually till the level at which he was needed to be at. This medication was in liquid form and easier to get him to swallow. By now he was also used to taking medication everyday and would take it almost willingly. The very next day the grunts reappeared – they were changing in nature and would last a few seconds. He also started wanting to sleep a little more with this medication. He would seem tired in the morning.

            We now entered the phase where a morning was something I absolutely dreaded. It was always a matter of how bad the morning was – bad, worse, even worse in varying degrees. He would have the maximum grunts at the time. The length of those grunts varied. He would have several in the day with the maximum being right after his afternoon nap and his morning wake up time. Normally, he would be asleep when I left to drop R to school and on my walk back I would be wondering on his morning.

            Within a few days of those grunts, he also started with small head drops – there would be this sound, his head would drop and he would be back to normal in a fraction of a second – yet another type of seizure. Now, we were thinking that these are harmless little seizures versus the complete ones. However, a seizure is a seizure and the effects on the brain are unknown. Who knows what is going on up there? Also, the other thing that was happening is that the medication that was being taken in through the mouth was being processed through his digestive system, entering his blood stream and entering his brain. His brain was getting tegretol so far, which then turned into trileptal. It was getting a different chemical balance in the brain. Who knew what was going on up there?

            He must have been very confused and felt really miserable and in spite of the fact that he was really good with his words right until then, had feelings going on that he could not express. He used to take a book to school every single day to his daycare to share with his class – now we have stacks of kids books at home and he would spend time every morning selecting his book. Right after his seizures started, he refused to touch books. If I asked to read to him it was always a no. Little did we realize the damage going on in his brain, none of which his neurologist had warned about.

            R was the kind of child who had started reading and writing at age four, not because we asked her to or wanted her to but because she just loved it. We never gave it a second thought and assumed that V would go the same route given that there was no difference in what we were doing at home between the two of them. There were so many surprises in store for us. This is why I really enjoyed and thoroughly recommend the movie, "Taare Zameen Par" to an Indian audience. Special needs, special education, accommodations for children is still an alien language to the vast majority of the Indian population, however educated. It takes your own experience to empathize with a child who is not "normal" in the sense of the word – how to use the right language, how to deal with him/her, how to educate the child, how to give the child the right direction, how to understand what his/her limitations are – these are things that one needs to relearn. In a society and culturally where we are taught that one has to get As no matter what the subject, that being smart only means getting good grades, that a child must be able to recite facts at a young age – with very little emphasis on either the creativity of the child or adapting to the varied needs of the child – these are things that we have learned as we have gone along and like I said, V teaches us everyday. The brain is such a fascinating object!!!

            Side effects of trileptal – for every medication the side effects run into two pages or more and if I were to list all of them or worry about them all, I would be worried for the rest of my life just over  this. Instead, focusing on the biggest impacts of this one – low sodium levels and a tremor in the hands. The tremor was not visible at the time. For the sodium levels it meant regular blood tests to ensure that it would not drop to unacceptable levels. So now we no longer needed to worry about the liver side effect. 

The tremor is what impacted his fine motor skills and, in turn his ability to write or draw at the expected developmental level. At age four we thought, will he ever be able to write? When I started seeing his drawings later in kindergarten  and first grade, it was something magical. I want to treasure each of those moments - the first time he could draw a straight line, the first time he could draw a whole person, the first time he could draw a circle, anything recognizable by the general audience...

Journey with Trileptal begins

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". 

The Beginning of the nightmare

            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 26^th 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. 

The third one

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 16^th, 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 5^th, 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?

 

The Second One

 

            The next day was V's third birthday – very well spent. He thoroughly enjoyed it. He got his favourite food – dosas – and some friends came over to spend the day. I was watching him like a hawk though based upon my discussion with the pediatrician. We decided to keep him home till the 5^th of January which is when he had his EKG scheduled. I was off work so it was a blessing. On the 5^th I took him to the clinic for his EKG which was uneventful. On the way back I remember stopping at the Safeway along the way to pick up a few things. We then reached home and I was making dosas for his lunch while talking on the phone with a friend. Suddenly he appeared saying he had peed while on his way to the bathroom and it was all wet and he was very upset that I wasn't coming to help him right then. So I hung up, took him to get a change of clothes. I came back to the kitchen. He was still upset and as I turned from the gas, saw him having a full blown seizure in front of my eyes. Now, I hadn't ever seen one, I didn't know what needed to be done, I kept thinking that the first one had been a completely freak case. Now, I see my little three-year old going through what I have only heard about – limbs shaking and collapsing in front of me.  I again imagined the worst. I yelled for my husband, who, those days, used to work from home – in the garage. He came charging in and said lets go. In the meantime, I stuck my finger in, thinking that he was going to throw up and be ok just like the previous time but of course, it didn't help. He was out and I had no clue. It wasn't so much that my finger was stuck and was hurting – it was that the seconds were passing and he was out to the world. We had the presence of mind to check that he was breathing.

            Again, the two of us in the car, on the way to the clinic. R was happy in school – bless her – she had no clue with what was going on. V came around sometime soon after we got into the car and wanted to sleep – I thought if he sleeps, he never will wake up, not realizing that he had to sleep – that is the body's reaction. By the time we reached the clinic it was hard to keep him awake. His regular pediatrician was busy – so another one saw us. She reassured us that everything seemed fine and he was fine and that it is fine to let him sleep. None of what she said was comforting. On the way back we stopped at the daycare – both our kids had been there since they were babies and with no family around they truly were our family. They had taken excellent care of both the children and it was a second home for them. We had decided to keep V home for the next ten days. I could barely say anything to the director and the office staff member – two other people besides several others at the daycare/preschool who were our lifeline and who we feel indebted to for all of their support. They understood – asked me – is this epilepsy? I was like – what does that mean? What does anything mean? It didn't make any sense.

            V was drowsy but fine upon reaching home. His pediatrician called later in the afternoon, apologized for not being around and said that given that he had had two seizures, he should be started on medication. The one she was prescribing was Tegretol which had been around for a long time. The long term effect was a bad liver – so do we live with a bad liver in the long run or let him have seizures? The answer was obvious as far as we were concerned. He had his first dose of the medication that night. We were told to come in and get his blood tested for the medication level periodically.

            That day was so confusing – I mean, is this something we would live with? Is this something he would outgrow? How long would he need to take the medication? How long would this continue? Being the optimist that I am, I assumed that he was going to be just fine.