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Ten years' of mysteries

Wed, 01/31/2007 - 15:05
I'm looking for help on some very basic stuff, and from what I read in some of the other posts, so are a lot of people. I thought epilepsy was such a well-understood branch of medicine that answers would be easy to find. My son (16) is having these weird spells, always upon waking either at night or from naps. He displays intense anxiety bordering on terror. He can speak, has full body control, etc. The episodes only last three minutes, maybe even less. He describes dark, obsessive thoughts about odd things like: infinity, or the infinitesemal, or both, unresolvable mathematical problems, etc. Generally, it is a feeling of doom, that the world is fundamentally flawed, the way he describes it. He has had a handful of generalised seizures in his lifetime, going back ten years. His EEG has been declared "abnormal" by medical science. So I assumed these recent episodes were just a new type of seizure -- probably simple partial seizures. However, when we took him to the pediatric neurologist recently, the guy said categorically these were NOT seizures. It never occurred to me to doubt him . . . . . . until now. Reading so many posts about people getting no help from neurologists, I guess it is time to go back to Square One. I would appreciate hearing from anyone who has experiences similar to my son's. Do they sound like seizures? many thanks to the group in advance Finnegan

Comments

Hi Finnegan, The medical

Submitted by solis on Wed, 2007-01-31 - 16:03
Hi Finnegan, The medical understanding (& treatment) of epilepsy has improved greatly in just over the past fifteen years. As your son has already had abnormal EEG readings, I suggest you take him to an epileptologist. That's a neurologist who further specializes in treating people with E. Whereas a general neurologist must know about every problem affecting the entire brain and spinal column. To find an epileptologist, go to epilepsy.com.. top of the page & third from the left. Then, I'd suggest phoning the names to corroberate. You are correct, the fear you mention does sound like a simple partial seizure. (note: I'm no physician, just one who's had partials for a long time) However, you are also correct in thinking this needs to be checked out, asap. If he has E, it is best to get your son on meds immediately to control the seizures & to prevent them from possibly getting worse. The generalized seizures he had might possibly have been partial generalized seizures, which ,if so, could make him ,possibly, able to have surgery if meds don't work. best wishes to you & your son, ~sol

Re: Hi Finnegan, The medical

Submitted by 1aussiemum on Wed, 2007-01-31 - 16:20
Hi Finnegan, I totally agree with Sol, also a friends son has nocturnal seizures, I know they were told they were most likely to happen either when he first falls asleep or around waking. A sleep study would help you to know what is actually going on and if it is a new type of seizure activity. At your son's age, I would presume he is still going through puberty so hormones will be fluctuating, this can impact on ANY underlying condition and make it necessary for reassesments, medication adjustments etc. There is so much more known about epilepsy than in the old days but sometimes it just adds to the confusion for us parents. Take Sol's advice and see someone who is more specialised that can assess your son and hopefully help him. Sue, New and confused

Re: Ten years' of mysteries

Submitted by Tabby on Wed, 2007-01-31 - 17:03
Hello Finnegan, I am very sorry to hear that your son is experiencing these "episodes" .I too use to get these feelings of anxiety and fear, and just about the same obsessive thoughts as your son when I was his age, and then after about 3 to 4 minutes I would be fine. I never seeked help until recently when the fear was followed by "auras" and then the complete inabilatity to move, when I first went to the doctors they didnt think I was having seizures, but small strokes. After an MRI the found a slight Chiari 1 malformation, which is the only reason my PCP reffered me to a neurologist. after they did the EEG they finally determined that I was having simple and complex partial seizures. and diagnosed me with epilepsy. If You've only had your son to one doctor, you may want to get a copy of the EEG and get a second opinion. Keep a record of what is going on before and after each time this happens. It will help, a good doctor will want to know I'm having seizures now and unfortunately know all to well what your son is going through, I cant say that what he is having are seizures, but I really think from being there myself, to get that second or even third opinion to see if they can help him out. Best wishes to you both ~ Tabby

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