Rapid Deterioration

It has been almost a year exactly since my son's seizures returned, and in that time his condition has changed rapidly from mild to severe. The pace was gradual at first, but as his school year continued he was missing more and more days, and barely keeping up.

For the last day of school in June 2010, we actually had to take our little guy to the ER at the children's hospital. He had spent the previous day and night having drop seizures probably every 30 minutes. Then added to the seizures were hallucinations. I don't think he slept at all that night. He kept sitting up quickly seeing clowns appear in the bedroom (he was watching a kid's show earlier), and was frightened the entire night. My husband stayed by his side and they prayed all night for Heavenly Father to help the scary things go away and to protect him. That was probably the scariest night of our lives.

The morning didn't bring about any changes, except that his hallucinations weren't scaring him anymore. He would see magic dolls flying or our faces changing colour, and think it was pretty funny. Needless to say, we didn't wait any longer to see if he came out of the seizures on his own and took him to the hospital. He was there for a week's long visit with massive amounts of medication.

Before the hospital stay, we were trying an additional drug called clobazam, didn't like the side effects and had just dropped his dosage. To this day we're still not sure if the drop in medication caused the hallucinations or if it was seizure activity.

The summer of 2010 and on turned into my worst nightmare. Our son's steady deterioration was alarming. My best description is that he was like a barely walking zombie. He couldn't eat on his own and would often vomit what we could get into him. He would wet the bed or wake up disoriented not knowing where he was, and couldn't dress himself. He would cry all the time due to his inability communicate, or take several minutes to say just one sentence. He would try so hard to speak, but his mind and overall functioning was almost at a stand still. Many days he would often just stare and have little response at all. He no longer had any friends and showed very little interest in anything.

He maybe had 3-5 days for those 2 months where we saw our son coming back to us, but the seizures would quickly return. The summer ended with 2 more hospitalizations from his brain going into a persistent seizure, status epilepticus.

Seizures Return With a Vengeance

Up to this point, our son's experience with epilepsy was very mild. The stresses were manageable, as were the seizures. Looking back, we were incredibly naive. We only had the smallest glimpse of what life with epilepsy was really like. The generalized tonic clonic (grand mal) seizures that our son had were frightening but since he really had so few, after a time the memory of them easily faded.

That is until December 4th 2009. I received a call from my our elementary school telling me they had called an ambulance because our son had a seizure. I almost didn't believe it. So many years had gone by without any seizure activity. Weren't those days were long gone?

I arrived at the school and found the teachers and paramedics surrounding my son. He was extremely disoriented, but ok. Obviously everyone was concerned and quite shaken up, it was the first seizure any of them had seen. I reassured them that it was normal for him to be quite tired after a seizure and that I would be taking him home to rest.

I'm sure everyone fully expected me to take the ambulance to the hospital. I knew how the system worked here, and I knew that we would sit for several hours to see a doctor who would tell us what we already know. Instead, I called our former Neurologist (we had moved to a new city) and we were began the treatment of Valproic Acid again.

Since we didn't have a local Neurologist, we knew it would be several months before we would get one. However, we weren't too concern based on our previous experience. The Valproic worked before, we expected it to magically stop the seizures again.

Again, we were mistaken. The seizures just kept coming. In one week in December, he had 10 "grand mals". His condition still wasn't severe, but the fact that the number of events were increasing despite the use of increasing medication was upsetting.

For a few months there began to be a bit of a pattern. He would have a seizure, sleep it off for a couple of hours, and then be back to normal. I always counted on him to have only one event and wake up fully recovered.

Eventually, this expectation began to fade as well. The trend changed from 1 event at a time to 2 or 3 throughout a day. The seizures also began to take a real toll on his overall functioning. Sometimes it would take him a week to get back to his regular speed in activity and thought processes. Along with the lapses in his thinking abilities was a new type of seizure we hadn't seen before: absence seizures, or petit mal.

Our son's absence seizures were also increasing. He appeared to be daydreaming and staring off into space, but he was really having 2-10 second seizures throughout the day everyday.

Valproic Acid

Changing the seizure treatment to valproic acid was overall great choice. I'll admit it was difficult to tell how much the medication was affecting his behaviour. Since he was 3 years old, it was pretty hard to tell what was as a result of meds or just him. He was extremely strong willed and somewhat aggressive, perhaps the valproic intensified it. However, we just dealt with behaviours and issues as they came, just as any parent would do when raising their children.

One positive thing about the valproic acid we noticed right away was how much easier it was to give him the medication. It was in liquid form and simple to give one quick squirt with the syringe, 3 times a day, and done. Much less wrestling.

The long term positive to using the valproic acid was that he had no seizure activity. The medication kept the seizures at bay for 2 1/2 years. It was incredible. We were so excited to meet with his neurologist in the summer of 2009 with the expectation that our son would be weaned off the medication, and that he had quite likely grown out of the epilepsy.

It was definitely a time of optimism. Our son was really flourishing. He was growing out of some younger tendencies with food pickiness, roughness, tantrums, and was generally becoming more independent. He no longer required speech pathology, which he had been doing through the ages of 3 and 4. He had a great year in kindergarten, and was continuing to learn and grow in grade 1. He could read well, was good with numbers, and made friends easily. He also loved to dance in a hip hop class. All in all our son was happy, as a 6 year old should be.

After about 6 months of loving life with our son free of medication, things turned for the worse...much worse.

Childhood Epilepsy

Our oldest son's second major seizure lasted probably 2 minutes, but it felt like 10. Another mom was at the park with me and she ran to the nearby community centre to call an ambulance. I remember her telling me how amazed she was that I could stay so calm.

I guess I was calm. It wasn't the first seizure I had seen, but I HAD to be strong and remain calm. I wanted to be able to communicate with the health professionals. Plus more importantly, my little guy needed me to be able to comfort him when he woke up.

That seizure was the real indicator that we were no longer dealing with just breath holding spells and our son obviously needed a specialist. We were put on a waiting list to see a Neurologist and to get an EEG, a test that measures and records the patterns and location of electrical activity in the brain.

His case was quite mild and he didn't have another seizure for another 6 months, but the next was 3 months after that. Each one occurring without any visible triggers. One happened when we were having a blast decorating cookies. It was so sad to see that joy dissipate so quickly. I caught him before he fell off his chair, kept him safe during his 2 minute seizure, and then watched him as he slept it off the for the next 2 hours. The next came as we were getting him ready for a bath. I was so relieved he hadn't gotten into the tub yet, but I would have been by his side regardless.

By this point, we finally had a specialist working with us and assessing the situation. We were told that the our son had childhood epilepsy and he would need medication to keep the seizures under control. However, the neurologist expected him to grow out of it.

Obviously this news was upsetting but not a complete surprise. The plan was that if our son could remain seizure free for 2-3 years, we would eventually be able to wean him off the medication. We were cautiously optimistic with the likely possibility that his condition was temporary.

We started on Tegretol. It was a real struggle at first to get him to take the pills. He was 3 at the time and, remember, had a mind of his own. I wrestled with him for an hour that first day and had no idea how we would manage it everyday.

Chocolate was the answer. Can you believe it still took some coaxing, but mixing it in chocolate milk or chocolate pudding did the trick.

After a time we noticed the Tegretol was actually increasing some very small jerking movements. Our son would be walking or talking normally, would have a very slight jerk or shake and would then continue on like nothing happened. He did not do this before the medication. It was so slight that most people didn't notice, but it was my job to notice things like that.

Valproic Acid was our next option.

First Seizure

My oldest had his first seizure when he was 2 years old. Being a strong willed toddler, a trait he will never grow out of I'm sure, the doctors thought the seizure resulted from a tantrum. In other words, they thought he had a breath holding seizure.

I, like many parents, had no idea that a child could have a "spell" from holding their breath. We were told not to worry and sent home armed with a warning to watch for intentional breath holding. I guess some kids quickly figure out how to get their way using this scary tactic.

Fortunately he didn't use the seizures to his advantage, but he did have more breath holding spells. They would happen after a fall at the playground where he would bump his head, take in a deep breath in preparation for some heavy wailing, but no cry came out. Instead his body would stiffen and contort. I quickly learned that I could help pull him out of the spell by calling, in close contact, his name. It was such a relief to see his eyes respond to my voice, look at me, and relax into my arms. Even though we were told to not coddle him so as to avoid manipulated breath holding, I didn't care. I held him close to help sooth the pain from his fall, telling him he would be ok and that I loved him, and of course gave him lots of kisses.

I should have realized sooner that the very first seizure didn't resemble the following 4 or 5 breath holding ones. His body reacted completely different. The breath holding spells had his entire body arched, limbs twisted, would only last a couple of seconds, and most importantly he would respond to my voice.

I didn't see the difference until a year after the first seizure. We were having a great time at the park, laughing and playing. Unexpectedly he just dropped to the ground face first. I ran to him, rolled him over, and said his name repeatedly while brushing sand off his face. This time however, his arms just stayed tight, close to his chest and his eyes were not coming back to me.