If I could use one word that describes what everyday life is like with a child who has epilepsy, it would be UNPREDICTABLE.
I think that would be the answer for any mom, of any circumstance, in that the only thing you can really count on is the unexpected.
Let's take yesterday for example, our son woke up with an amazing energy. He dressed himself, ate his breakfast happily, played with his little brother kindly and with words, not fists, when there was conflict, he was joking, laughing, and being his goofy self. I loves days like that, they don't appear too often and everyone is happy and laughing along with him.
He was able to go to school and when I picked him up at the end of the day I was expecting to see him in the same mood. Instead, I was greeted as always by his aide but along side her was his classroom teacher, which made me a little nervous. Then I looked at my son. He was walking with assistance and very pale. They explained to me that he had just vomited all over his desk, and clearly wasn't feeling well. I felt awful for him, not the best way to end a day at school.
Well he climbed in our van, we drove across town to pick up his little brother from play school, and then headed straight home. By the time we got home, he was better. In fact, he had a quick snack and was ready to pick up where he left off playing with his brother that morning. I had to check on him a few times to make sure he was ok, but it was as though nothing happened. The only mention of it was when his dad came home later and he said, "Dad, at school I barfed all over my desk but it's done now". Well, I guess that's that.
The evening was going pretty smooth until he had an "unexpected" seizure. It seems to happen like this often where our son is having a fabulous day and WHAM, he hits the floor. He had left his helmet in his bedroom and didn't have it on when he fell, so the fall resulted in a goose egg on the side of his head and a bleeding nose. Poor guy slept for the next couple of hours, took his medication, then went back to bed for the rest of the night.
I'd love to say the seizures ended there, but that's rarely the case. The next day he had a long one lasting over 5 minutes and I had to give him midazolam. Actually, he had 2 seizures that were much too long and required rescue meds, one in the morning and another in the evening. Days like that he stays home from school and we all just spend time together.
It would be a fairly safe assumption that these seizure days are hard on the family. They are difficult. However, we've been very fortunate to have more good days than bad lately. Days where I'm playing referee to all of our children, where we can participate in activities as a family, and days where we feel incredibly blessed to have 3 amazing little boys.
Sunday, February 13, 2011
Friday, February 4, 2011
IVIg Treatment
We took our son to the hospital this week for his monthly IVIg treatment. Since I'm not really an expert, I'll use Wikipedia's description of what that actually is:
Intravenous immunoglobulin (IVIG) is a blood product administered intravenously. It contains the pooled IgG(immunoglobulin (antibody) G) extracted from the plasma of over one thousand blood donors. IVIG's effects last between 2 weeks and 3 months. It is mainly used as treatment in three major categories:
Intravenous immunoglobulin (IVIG) is a blood product administered intravenously. It contains the pooled IgG(immunoglobulin (antibody) G) extracted from the plasma of over one thousand blood donors. IVIG's effects last between 2 weeks and 3 months. It is mainly used as treatment in three major categories:
Immune deficiencies
Inflammartory and autoimmune diseases
Acute infections.
The Neurologist's theory is that our son possibly has an autoimmune condition. There has been no definitive confirmation but since our son's medications haven't been enough to keep away any breakthrough seizures, trying the treatment is worth a shot. It takes 6 months to see if it's helping or not, and he just had his 4th treatment. So, we're still in the trial phase.
He is surprisingly very calm at these hospital visits. We take him to the hospital first thing in the morning and are there until mid afternoon. He's only 7 but seems tougher than the teenagers. A lot of patients require freezing before the IV is attempted and we've heard the odd cursing at the pain, but not our little guy. He just breathes right through it, even through the 3-4 attempts it takes to find a good vein. His strength amazes me.
On the plus side, he gets to order almost anything he wants for lunch, watches TV, plays Xbox and sometimes gets to play in an attached playroom. In fact, I think he enjoys being at the hospital all day with so many fun things at his disposal. It's reassuring too that when the treatment is finished for the day we get to go home. :)
On the plus side, he gets to order almost anything he wants for lunch, watches TV, plays Xbox and sometimes gets to play in an attached playroom. In fact, I think he enjoys being at the hospital all day with so many fun things at his disposal. It's reassuring too that when the treatment is finished for the day we get to go home. :)
Monday, January 24, 2011
Valproic Acid Side Effects
As I've mentioned in previous posts, our son has undergone a severe cognitive decline in the last year. The whole situation has been quite puzzling to everyone involved, our family and the health care professionals. Our son was just not displaying side effects in a typical way. It was difficult to pin point what was causing his troubles. Was it as a result of the seizures, the medication, the two combined, or an underlying condition? We're still not sure what the answer is. However, during one of our IVIg (intravenous treatment) visits at the Children's Hospital in November, our Neurologist came to us with an interesting theory.
Our Neurologist and Neuropsychologist had just attended a medical conference where a colleague shared his patient's experiences with Valproic Acid. This doctor had 3-4 cases where he found a direct link between the use of Valproic Acid and Dementia. Dementia being a serious loss of cognitive ability in a previously unimpaired person. The Neurologist & Neuropsychologist immediately thought of our son, who was taking 18mL (900mg) of Valproic acid per day. In fact, he has been on Valproic Acid for half his life.
With these new confirmed cases in mind, our Neurologist thought it would be best to start weaning our son off the Valproic Acid. The possibility of the medication causing severe difficulties was pretty alarming since he had been taking it for so long, and so much of it. Regardless, we were very happy to reduce the medication. We felt that our son was possibly being over medicated anyway because he really seemed to be in a drug induced stupor all the time.
On the higher doses, our son was extremely tired all day. He would sleep in so long that I would need to eventually wake him. He'd take long naps and go to bed very early. Sometimes he would even need to sleep at school because he was so tired. He had a lot of difficulty getting ready in the morning. On a typical morning, he would require assistance using the toilet, bathing, and dressing. Each meal was spent coaxing or forcing him to eat, which would sometimes get vomited in resistance. Reading a book would take an hour, when it used to take maybe 5-10 min. I could go on, but he basically would need to be carefully walked through each step of his day. He was also having several absence seizures throughout the day, which wasn't helping his already tired body.
After a month of reducing the Valproic Acid, we've seen a significant improvement. I wouldn't say he's back to "normal", but we're starting to see more good days than bad. Maybe 4 days out of 7 he's waking on his own, dressing himself, eating, talking more to us without phasing in and out of seizures, interacting more with kids at school, and his reading isn't as laboured. There's still a lot of issues we're dealing with in regards to all of these things, but we're just ecstatic that there's any progress at all.
It made me wonder how much influence it had on him when he was 4 or 5 years old. How much of his development had been impaired because of this drug? I don't think we'll ever know the answer, and there's probably no point dwelling on it either.
Our Neurologist and Neuropsychologist had just attended a medical conference where a colleague shared his patient's experiences with Valproic Acid. This doctor had 3-4 cases where he found a direct link between the use of Valproic Acid and Dementia. Dementia being a serious loss of cognitive ability in a previously unimpaired person. The Neurologist & Neuropsychologist immediately thought of our son, who was taking 18mL (900mg) of Valproic acid per day. In fact, he has been on Valproic Acid for half his life.
With these new confirmed cases in mind, our Neurologist thought it would be best to start weaning our son off the Valproic Acid. The possibility of the medication causing severe difficulties was pretty alarming since he had been taking it for so long, and so much of it. Regardless, we were very happy to reduce the medication. We felt that our son was possibly being over medicated anyway because he really seemed to be in a drug induced stupor all the time.
On the higher doses, our son was extremely tired all day. He would sleep in so long that I would need to eventually wake him. He'd take long naps and go to bed very early. Sometimes he would even need to sleep at school because he was so tired. He had a lot of difficulty getting ready in the morning. On a typical morning, he would require assistance using the toilet, bathing, and dressing. Each meal was spent coaxing or forcing him to eat, which would sometimes get vomited in resistance. Reading a book would take an hour, when it used to take maybe 5-10 min. I could go on, but he basically would need to be carefully walked through each step of his day. He was also having several absence seizures throughout the day, which wasn't helping his already tired body.
After a month of reducing the Valproic Acid, we've seen a significant improvement. I wouldn't say he's back to "normal", but we're starting to see more good days than bad. Maybe 4 days out of 7 he's waking on his own, dressing himself, eating, talking more to us without phasing in and out of seizures, interacting more with kids at school, and his reading isn't as laboured. There's still a lot of issues we're dealing with in regards to all of these things, but we're just ecstatic that there's any progress at all.
It made me wonder how much influence it had on him when he was 4 or 5 years old. How much of his development had been impaired because of this drug? I don't think we'll ever know the answer, and there's probably no point dwelling on it either.
Sunday, January 9, 2011
Seizure Control & Medication
Seizure control? Nope, and we're still searching for answers.
His typical pattern is to have absence seizures throughout the day, and about 1-2 days a week he'll have a bad cluster day. These cluster days aren't good. He'll have multiple tonic clonic (grand mal) seizures, some back to back, some a few hours apart. Each of these bad days results in rescue meds needing to be given. We used to give him Ativan to stop the clusters, but I can't stand the side effects. It takes a few days for this med to work out of his system, and makes him extremely disoriented. We mainly use midazolam now. It's quick acting but doesn't last as long in the body, so our son may have a cluster a couple of hours after the previous.
The cluster days always put me on edge. They are also the main reason we decided to stay home for Christmas. If our son has too many seizures back to back or if the rescue medication doesn't work, he could require emergency care. The chances of us having to call an ambulance are high whenever a cluster day appears, so we tend to stay close to home.
All our current maintenance medication:
Valproic Acid
Clonazepam
Keppra
Vitamin B6
Lamictal
Our son also receives an IVIg treatment, which I can explain more in a later post.
We joke about how we feel like a pharmacy, which isn't too far from the truth.
Severe Cognitive Decline
The last few months have been up and down to say the least. As mentioned before, school had a rocky start. We had difficulty getting our son ready for his early school day start. Often we would need to wake him up by 6am in order to get him alert enough to be at school by 8am. He would need help showering, dressing, and eating. He wasn't really responsive and almost always too tired to really be anywhere but home most of the day.
We received more insight into our son's condition when we met with his Neuropsychologist. She didn't provide any answers as to why he was progressively delayed, but she was able to help us see what his abilities were at the time due to his medical condition. We knew that his overall functioning had steadily declined, and I knew just from reading with him that he was really struggling. However, it was worse than we thought. Our son went from an average 6 year old to an extremely low functioning 7 year old. Most of the areas they were able to investigate showed that he was functioning much below the 1st percentile. I was shocked with the realization that he had declined that much cognitively in just 1 year. These results explained so much about him emotionally as well. We really needed to simplify things for him; his routine, communication, school, expectations, tasks, everything.
With these assessment results, we, along with his teachers, decided to shorten his school days. This would allow him to get a couple hours more sleep and enable him to be at school when he's more alert. This modification has been amazing. Our son appears to have more energy throughout the day, is better able to perform simple tasks to get ready in the morning, is more engaged during class, and is interacting more with other children. Everyone is so pleased with these changes in our son's abilities. It gives me hope that maybe we'll keep getting glimpses of how our son used to be. Maybe he'll continue to pull through all these layers of fatigue, medication and seizures to show us he's still in there.
We received more insight into our son's condition when we met with his Neuropsychologist. She didn't provide any answers as to why he was progressively delayed, but she was able to help us see what his abilities were at the time due to his medical condition. We knew that his overall functioning had steadily declined, and I knew just from reading with him that he was really struggling. However, it was worse than we thought. Our son went from an average 6 year old to an extremely low functioning 7 year old. Most of the areas they were able to investigate showed that he was functioning much below the 1st percentile. I was shocked with the realization that he had declined that much cognitively in just 1 year. These results explained so much about him emotionally as well. We really needed to simplify things for him; his routine, communication, school, expectations, tasks, everything.
With these assessment results, we, along with his teachers, decided to shorten his school days. This would allow him to get a couple hours more sleep and enable him to be at school when he's more alert. This modification has been amazing. Our son appears to have more energy throughout the day, is better able to perform simple tasks to get ready in the morning, is more engaged during class, and is interacting more with other children. Everyone is so pleased with these changes in our son's abilities. It gives me hope that maybe we'll keep getting glimpses of how our son used to be. Maybe he'll continue to pull through all these layers of fatigue, medication and seizures to show us he's still in there.
Monday, December 6, 2010
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.
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.
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