School: Part 2

Looking over my previous post, I've realized how much progress we've gained in the last few months.  I also remembered that our Neurologist has seen a few of our son's absence (staring) seizures, and the Nurse Practitioner we work with actually saw one of his "grand mals" just a couple of weeks ago.  So, I guess I was wrong.  Going through all this history has also helped me see how much ongoing care we do receive.

Our son's Neurologist is very thorough, knowledgeable, patient, and treats us with great respect.  So much so, that he helped what began as an incredibly frustrating situation with the school board become extremely positive.  I wasn't sure how long it would take to get a meeting set up with the school and the doctor, or if it would even be a possibility.  However upon hearing our dilemma, the Neurologist was more than happy to cooperate with the school and answer any question they had, especially if it would help our son.  We already had an appointment booked for later that week and he agreed to meet with the administrators for the last 15 minutes. I was a little bit shocked that such a meeting would fall into place so easily, but was truly grateful for his generosity and willingness to cooperate.

The day of the arranged conference, 4 individuals came to meet with the Neurologist: the principal from our elementary school, the resource teacher, our son's grade 2 teacher, and a member of the school board.  Our son's condition and treatments, as well as answering any and all questions from the school staff.  One of the main questions regarding what protocol they should take if our son did have seizures at school.  We had a system in place the previous year, but given the new situation it was a necessary question.

We were able to leave that meeting with a whole new outlook and respect for the school board.  It didn't take me long to realize that my initial anger was based on a simple miscommunication.  Once the time was taken to explain the situation at the school, we were very happy with overall goals.  Yes they were covering their butts, but they were also ensuring the best care and education would be available to our son.  I put my defensive momma bear reactions aside and began to trust their decisions.

We also left that meeting knowing the principal had an interview lined up with a possible special needs aide, who recently moved to our city, and had experience with seizures.  This aide would be by his side for the entire day at school.  She would be there to help in the event of a seizure, but she would also be there to help him learn.   Our son still wasn't able to start school right away, but there was a solid plan in place.  Which was a good thing because, yet again, our son's "awake" days only lasted for about a week before the seizures returned again, along with his haze.

Over these past few months, the special needs aide has been amazing.  She meets us at our drop off spot each morning and afternoon so my son is always in arms reach, and we update each other of how things are going for him.  I basically get a run down everyday of how my son is doing at school.

I know not everyone gets that much interaction with their children's educators.  I also know there's many parents of children with special needs who have to fight, sometimes for years, to get any help from their school boards.  Eventually some of these kids are granted funding for supports, but they may only see an aide for 30 minutes a day, or not at all and the money is spent elsewhere.  Our fight didn't really turn into a fight at all, but now I have a small idea of what some parents have to face for their children's education.

I feel an overwhelming sense of gratitude for the school our son is attending. Along with their effective reading programming, the principal and any teacher our son's had have been patient and kind.  Plus, I really love his aide.  I genuinely feel as though my son is receiving the best education available.

New Challenge: School

September 2009 brought about some new challenges for our family. With our son's steady decline and ongoing tests to look for some diagnosis, the possibility of him going to school was questionable. I thought about his ability to be able to handle school for the entire month of August. He was so "out of it" that I didn't think school would really be an option. My only other options were private school, homeschool, or no formal schooling at all until he could become more stable. I made several attempts in contacting our local school board to discuss the situation, but found it pretty difficult to get any response since they were on summer break as well.

It wasn't until the end of our son's 2nd hospital stay in August that we saw a ray of hope. His treatment allowed him to experience a break in the seizure activity and regain at least a small amount of stability. He came home almost looking like himself again. He was able to walk and run on his own, he was engaging in conversation, drawing, writing, and wanting to play with friends. It was such an amazing contrast to the previous couple of months. Maybe a regular classroom environment, with an aide, was a possibility after all.

With only a few days remaining until classes resumed, we attempted to contact the school again. We were able to discuss how our son's condition changed, and was continuing to change, throughout the summer, but we were left with the impression that everything was already in place from the previous year. He could return to school as planned.

The day prior to 1st day of classes we took our son to meet his new grade 2 teacher. We discussed his care and needs, and everything seemed to be falling into place. Our little guy was really excited to get back school. That is until we received a call later that day from the vice principal requesting that we not bring our son to school the following day. They didn't want him returning to school until an aide was in place for him, whom we were told only a few days before was already there. We decided to take the request as only a request, and had him ready for class the following day. didn't want him missing out, especially since he was feeling so well.

Upon our arrival to the 1st day of school, we were immediately sent home. The school board decided that our son would not be allowed to return to school until they met with our Neurologist, and hired someone trained with experience in seizures. I was extremely confused and upset. It took a full month for them to return my calls prior to school starting, were told an aide was ready for him, and then they demand meetings with his doctor??

It was really difficult for us to get an appointment for our son, it could take up to a year for some children to even see a Neurologist. For some reason though the law suit fearing school had to hear straight from the "doctor" what our son's seizures looked like and what his needs were. It made no sense to me that they thought the Neurologist, who to this day hasn't seen any of my son's actual seizures, could describe what his typical events were like. I contacted our local Epilepsy Association and they had never heard of such a request, the Neuro team at the hospital had never encountered one either.

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.

Opening Up

In an attempt to cope with our son's ever worsening epilepsy, I am starting this blog. I am by no means an expert in any way. I am just trying to wade through all the difficulties and harsh realities while focusing on small moments that give us happiness and hope.

I'm sure there are many who share similar experiences, possibly even similar symptoms, who could offer advice and support. Maybe our family's challenges and joys can show others that they are not alone in their struggles.

In the very least, this blog will give me an outlet to share our journey with epilepsy.