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Need help with diagnosis

Tue, 03/26/2013 - 10:22

Hello, I am new to these forums and would really appreciate any insight you might have on this issue.  My son (now 7) started having seizures when he was 3 or 4.  The first seizures he had were pretty severe - shaking of his entire body for about 30-60 seconds.  His eyes were still open and he seemed conscious during them, but he could not speak or otherwise communicate.  If he was standing, he would fall to the ground.  Our nuerologist put him on Kepra and that seemed to work for almost a year.  Then he started having night seizures (only).  They started sporadically, but became more frequent.  They were the same type of seizures he had initially - except they occurred only when he was asleep.  We switched drugs (not sure the name of the new one) and that seems to have stopped the night seizures as well.

However, now he seems to have what appears to be very mild Atonic seizures.  He has what he calls "wiggly" hands, feet or legs.  These last 10-15 seconds and there is no visual signs of any problems with his hand, foot or leg.  He simply complains that the extremity feels wiggly.  When we touch it during that time, we cannot feel anything abnormal.  If it is in his leg, he often will drop to the ground, but seems able to control his fall.  There is no evidence of a seizure on his face - droopy eyes or anything else I have read about that is associated with Atonic seizures.

Our nuergologist at first dismissed these as not being seizure related, but since the frequency has increased during the last few weeks, we just completed a 72 hour EEG scan and should have the results later this week.  Obviously the results of the scan will give us more insight, but I just wanted to reach out to the community to see of others have had similar experiences and might have some insight to share.

 Thanks for taking the time to read this and provide feedback.

 Jeff

Comments

Re: Need help with diagnosis

Submitted by mereloaded on Tue, 2013-03-26 - 12:11
For what you describe, it seem like myocyclonic jerks. No loss of conciussness, just like a jolt on arms/hands or feet or together that last just a second or two and they repeat a short moment later. Is that it?

Re: Need help with diagnosis

Submitted by JCS on Tue, 2013-03-26 - 12:31
Thanks for responding.  I don't think that is it as there is no actual movement of his limbs when this happens.

Re: Need help with diagnosis

Submitted by mereloaded on Tue, 2013-03-26 - 13:21
I understand what you mean. Seizures, however, manifest themselves in different ways. My son fell randomly when he was younger(about 4 times in his life time), he would simply collapse, but he was wide awake to pick himself up. I never know what it was and I attributed to him being sleepy or too hungry/too tired. He said his knees "just buckled" , and we left it at that. Fast forward 8 years later and then he had the myoclonic jerks one morning, and then 7 weeks later he had teh jerks again followe by his first and only GTC that lasted about one minute. When the neurologist asked about past episodes I remembered about the few times he "fainted" but without the fainting part, because he pick himself rigth up said it was OK. He would look pale (almost green) and we would tell him to sit down. it turns out that it was the prelude of seizures, the brain short circuiting momentarely and then correcting itself before an episode. children grow and the brain grows until they are 25 years of age. A lot of times the brain is able to stop the episodes naturally, that is why new seizures are called "break trough" seizures because thay are the ones that either the body or the medicine could not stop. Anyway, maybe this does not help at all but wanted to let you know about my son;'s experience. His 15 now and just diagnosed with JME.

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