This post expresses my personal opinion. It is merely a theory for discussion and possibly a hypothesis that will or will not be supported by evidence over time. Simply stated, my theory is:
A: There are different kinds of seizure disorders.
B. It is possible for an individual to have more than one kind of seizure disorder.
C. Individuals with MECP2 Duplication Syndrome often have multiple seizure disorders.
It could be argued that this idea is really just splitting hairs from conventional thinking. Certainly, it is well known that some people have more than one kind of seizure, but in most cases it seems this is conceptualized as a single seizure disorder that manifests itself in two or more types of seizures. This way of thinking about it implies that it is most likely that a single intervention that manages the underlying disorder may control the various types of seizures seen in that individual. The multiple seizure disorders concept suggests that it could be more helpful to view this situation as two or more disorders, each manifesting in its own seizures, which may or may not be similar to the seizures of the other seizure disorder or disorders.
In my opinion, it is simply a different way of conceptualizing epileptic activity in SOME individuals. For example, monotherapy (the use of a single medication) has usually been shown to be more effective than polytherapy (the use of two or more medications) in treating seizures. But there may be a subgroup of individuals with seizures who need different medications to treat different seizure disorders in the same individual. These different seizure disorders might result from problems different areas of the brain.
Of course, it seems reasonable to assume that the seizures seen in individuals with MECP2 Duplication Syndrome all stem from a single cause, the overabundance of MeCP2 protein. Nevertheless, the effects of this excess activity may have different effects in different areas of the brain.
These thoughts are based on a simple observation of our son’s seizures. Last October, we made a change in his anticonvulsant medication. Since then, we have seen a remarkable change in some kinds of seizures, a less dramatic change in others, and little or no change in yet other kinds of seizures. For example, prior to this change he had what his neurologist called hypermotor seizures about once per month. From, the first day of the medication change until today (10 months later), we have not seen another of these.
He also had extreme myoclonic spasms (with his upper body Jacknifing down violently) 4 or 5 times per week on average (these sometimes could occur as often as several in an hour or as infrequently as more than a week apart). These have decreased in frequency and intensity but still occur.
There is also a third kind of seizure these are smaller spasms that affect his face and body that come in clusters, every 10 or 15 seconds, with the clusters lasting for anywhere from 5 to 35 minutes. These have not decreased at all with the medication change.
This might help explain why seizure control is extremely difficult and why it is often difficult to determine whether a specific treatment is helpful or not.
So, this raises the question of whether it is most useful to think of this as one seizure disorder manifesting in several kinds of seizures or multiple seizure disorders. I would be surprised to find out that I was the first one to raise this question. I’d be interested in what other people think about this… pro or con. Please consider leaving a comment.