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.
Monday, January 24, 2011
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.
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