Wink Epilepsy.. what can you tell me?

[Austin2007]

I have a 3 year old son who was diagnosed with Wink Epilepsy in Aug 2009. We dont really know anything about it, what can happen, if he can outgrow it etc. Anyone have any info for me ? thanks

 

[Endless]

Hi, and Welcome!

I had never heard of wink epilepsy until you posted your message. I googled it, and this is all I could find:
http://www.cordingleyneurology.com/hemifacial.html

 

[Bernard]

Hi Austin2007, welcome to the forum. :hello:

I don't think Wink Epilepsy is a clinical diagnosis. I can't seem to find any information / references to it anywhere.

 

[Rae1889]

Hi Austin2007, welcome to the forum. :hello:

I don't think Wink Epilepsy is a clinical diagnosis. I can't seem to find any information / references to it anywhere.

Same. Nothing comes up. But my guess would be that If he is making the wink motion, that it is a myoclonic seizure.

 

[Austin2007]

HI thanks for that link. That is a link we went to as well. Talked to the Neurologist who said no it was quite different to that. he is looking for somer info for us for next time we visit in 6 weeks.

 

[Austin2007]

Same. Nothing comes up. But my guess would be that If he is making the wink motion, that it is a myoclonic seizure.

I'm new to all this but we have been diagnosed by a top neurologist in our city. He said Wink Epilepsy was extremely rare and can be confused with Tics. We have had EEGs and an MRI to confirm it is epilepsy. It is frustrating to have no information on this type. He starts winking mainly on the left eye but it does happen on both, he winks for hours then looses all control of his facial muscles on the side of the face, his eyelid droops till he can't open it any more. He also has a slight mouth pull upwards when this is happening. They tried him on Tegratol (sp) but it made him so sleepy and his speech started to worsen and become slurred. He is now on Epilim and every week we are increasing the amounts till we are on the max we can give him. We are going into hospital for 5-7 days to be hooked up to a machine like an EEG constantly to be monitored so the Drs can get more of a picture of what is going on. These episodes are happening daily.

I will do a bit of reading on myoclonic seizures thanks

 

[drarvindr]

Dear Austin2007,
I have never heard of anything called "wink epilepsy" and your post intrigued me.Since you mentioned it i have poured through neurology texts (yes, i love neurology so much i read it in whatever little spare time i have. yes , i know how pathetic i sound) and have looked through journals and not ONE reference. So , after a deep search i must conclude that , unless your neurologist has published a paper on it somewhere i can't find , there's no such thing and you need to ask him for a proper medical name. Tell him you're not intimidated by long and foreign sounding names.

The closest i could find was this : ( Taken from Victor and Adams' Principles of Neurology 8th edition)

Benign Childhood Epilepsy with Centrotemporal Spikes (Rolandic
Epilepsy, Sylvian Epilepsy) and Epilepsy with Occipital Spikes
This type of focal motor epilepsy is unique among the partial epilepsies of childhood in that it tends to be a self-limited disorder,
transmitted in families as an autosomal dominant trait. The convulsive disorder begins between 5 and 9 years of age and usually
announces itself by a nocturnal tonic-clonic seizure with focal onset.Thereafter, the seizures take the form of clonic contractions of
one side of the face, less often of one arm or leg, and the interictal EEG shows high-voltage spikes in the contralateral lower rolandic
or centrotemporal area. The seizures are readily controlled by a single anticonvulsant drug and gradually disappear during adolescence.
The relation of this syndrome to acquired aphasia with convulsive disorder in children, described by Landau and Kleffner, is
unsettled. A similar type of epilepsy, usually benign in the sense that there is no intellectual deterioration and a cessation of seizures in
adolescence, has been associated with spike activity over the occipital lobes, as identified by Panayiotopoulos. As described in the
review by Taylor and colleagues, visual hallucinations, while not invariable, are the most common clinical feature; sensations of
movements of the eyes, tinnitus, or vertigo are also reported in cases of occipital epilepsy. These authors point out symptomatic
causes of the syndrome, such as cortical heterotopias. In both of these types of childhood epilepsy, the observation that spikes are
greatly accentuated by sleep is a useful diagnostic aid.

Seizures Presenting in Early Childhood (Onset during the First 5 to 6 Years):
A number of partial epilepsies may appear for the first time during this age period and carry a good prognosis, i.e., the neurologic and intellectual capacities remain relatively unimpaired and seizures may cease in adolescence. These disorders begin between 3 and 13 years of age, and there is often a familial predisposition. Most are marked by distinctive focal spike activity that is greatly accentuated by sleep . In one form, unilateral tonic or clonic contractions of the face and limbs recur repeatedly with or without paresthesias; anarthria follows the seizure. There are central and temporal spikes in the EEG interictally. According to Gastaut, the focus may involve an occipital lobe with EEG spiking on eye closure. An acquired aphasia was noted by Landau and Kleffner to mark the beginning of an illness in which there are partial or generalized motor seizures and multifocal spike or spike-and-wave discharges in the EEG. Tumor and arterio-venous malformation are rare causes in this age group

Hope this has helped somewhat,
My best wishes to your son for a speedy recovery,
Arvind.