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.