Drop Seizure Video

This YouTube video looks a lot like what has been described as a drop in individuals with individuals with MECP2 Duplication Syndrome. The individual in this video does not have MECP2 Duplication Syndrome, but the video provides a good example of what some drops look like.

The text below is the original text accompanying the video on YouTube.

Uploaded on 16 Aug 2006

An actual epileptic seizure. The patient has had them since the age of nine months. They have been labeled as Infantile Spasms. She has been hooked up to machines which have said that when she has these jerks, there is electrical activity throughout her whole body, not just in the brain. Various medical treatments have been tried, including brain surgery in New York City, the implantation of a Vagal Nerve Stimulator or VNS, plus many different medications such as Felbatol and Topomax.

Some say the brain surgery in 2000 helped, but she still has seizures at the rate of about one a week now. The VNS(2007) proved ineffective, but that still remains as inconclusive evidence since the staff at the hospital which installed always averred “something was wrong with the VNS unit, there’s a short in it, or it’s not sending information correctly.” We were advised “we’ll turn it off” and they did. Really it never seemed to make a difference.

Towards the end of the brain wave monitoring session in the hospital, which lasted five days and nights, we lowered her Felbatol medication to almost zero. Although we gradually re-upped her meds to the same level as had previously been, she began having much worse seizures than she’d previously had, and even with extra Felbatol, the seizures remain worse, never to return to the type seen here, which now seem gentle in comparison.

Our son, who has MECP2 Duplication Syndrome has drops like this. Sometimes, they are momentary and he regains consciousness quickly. Other times, he remains down and unconscious for some seconds or minutes at the end of the drop. Other MECP2 Duplication Syndrome families may want to comment on whether the drops they have seen look like this or how they differ.

While families have generally referred to these as drops, these kinds of seizures have also been known my many other, including: epileptic spasms, nodding spasms, infantile spasms, salaam attacks, salaam convulsions, generalized flexion epilepsy syndrome, Blitz-Nick-Salaam-Krämpfe, eclampsia nutans, flexion spasm, infantile spastic epilepsy, jackknife convulsion syndrome, jackknife spasm, massive myoclonia syndrome, and nodding spasms.

In our son’s case drops seem to fall into two categories: atonic drops (loss of tone) and flexion spasm drops (which are forceful).

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One response to “Drop Seizure Video

  1. Pingback: Late Onset Spasms (LOS) | MECP2 Duplication Syndrome Blog

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