Infantile Spasms

For the past few weeks Elisabeth has been having multiple seizures a day. We almost doubled her dose of medication and still nothing changed. Today I took her back in to the pediatrician who then got in touch with her neurologist.

It has been concluded that Elisabeth is suffering from Infantile Spasms. Here is a little information about this form of epilepsy:

Infantile spasms constitute a unique and very serious epilepsy syndrome confined to infants. The usual characteristic features of this syndrome are:

• tonic or myoclonic seizures
• hypsarrhythmic EEGs
• mental retardation

Infantile spasms may vary considerably in their clinical manifestations. Some seizures are characterized by brief head nods, whereas other seizures consist of violent flexion of the trunk, arms, and legs.

Infantile spasms frequently occur in clusters, and the intensity and frequency of the spasms in each cluster may increase to a peak before progressively decreasing. The seizures are very brief, and the casual observer may miss single seizures. The number of seizures per cluster varies considerably. Some clusters have as many as 150 seizures. The number of clusters per day also varies. Some patients have as many as 60 clusters per day.

We will be taking Elisabeth to Spokane for an EEG sometime in the next week. The EEG will confirm the diagnoses. We will then begin treatment to stop the spasms. I hope to get this situation under control soon. I have read on several websites that 1 in 20 babies with infantile spasms die.....and that has me slightly panicked.