Temporal Lobe Epilepsy - Simple partial Seizures

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Hi, I'm new to this, my son (10years old) was diagnosed with temporal lobe epilepsy last week, i believe he has simple partial seizures although the doctor did not go into this. For the past year or so he has experienced episodes of de ja vu, at first we thought that was all they were, after he has theses episodes he has a really bad headache, feel sick, sometimes goes clammy and feels quite tired. The last couple of times he had it he also heard voices, which was really scary for him, the episodes of de ja vu and voice hearing usually only last about 2 mins. Sorry if I'm rambling on a bit, but I feel in such a daze about it all, my son is an above average intelligent boy and I feel like we've gone from just thinking he's having de ja vu, which most people I know get every so often, to epilepsy. The diagnosis was confirmed by a 3rd EEG, but the doctor doesn't seem to be able to answer any of my questions and I reall feel like we're walking blind. If anybody out there can help answer these questions I'd be so grateful, firstly I asked the doctor what the chances are of the seizures developing into full blown fits, she said she didn't know, I asked if he might grow out of them, she said she didn't know. Basicallly she said they will either stay the same, get better or get worse, which to me is pretty obvious! She left it up to me whether or not we started treatment, and so far we haven't, but if I start treatment now while they're not so bad will that prevent them getting any worse? Or if they're going to get worse will that happen anyway regardless of whether we start treatment now or later? If anyone can help I'd be so grateful, right now I don't know whether I'm coming or going. Thanks Lisa

Comments

Re: Temporal Lobe Epilepsy - Simple partial Seizures

Submitted by Katryna on Mon, 2008-06-02 - 16:52

Hi Lisa, I have been surfing the net for 2 hours, hoping to find someone who has had a similar experience. My son is 13 years old and recently became ill with, what I thought, was flu. During the night he had high fever and woke me up to say that he was feeling strange. He had a high fever and I tried to calm him down. I also gave Paracetamol for his fever. I thought his feelings was a sort of delirium due to the fever. 2 weeks after this he came to me to say that he has been having experiences similar to the night when he was ill. He was hearing things and feeling weird from time to time. An EEG showed abnormal activity in the temporal lobe. We thought it would pass and perhaps it was all just a side effect of some sort but he is now having the episodes 2 - 3 times per day. Reading the comments from other people made me realise that we should immediately consider medication. I am worried about his swimming (he is a champion swimmer) and his academic work. It breaks a parent's heart, doesn't it?

Karin

Hi Lisa, I have been surfing the net for 2 hours, hoping to find someone who has had a similar experience. My son is 13 years old and recently became ill with, what I thought, was flu. During the night he had high fever and woke me up to say that he was feeling strange. He had a high fever and I tried to calm him down. I also gave Paracetamol for his fever. I thought his feelings was a sort of delirium due to the fever. 2 weeks after this he came to me to say that he has been having experiences similar to the night when he was ill. He was hearing things and feeling weird from time to time. An EEG showed abnormal activity in the temporal lobe. We thought it would pass and perhaps it was all just a side effect of some sort but he is now having the episodes 2 - 3 times per day. Reading the comments from other people made me realise that we should immediately consider medication. I am worried about his swimming (he is a champion swimmer) and his academic work. It breaks a parent's heart, doesn't it?

Karin

Hello Lisa, my name is Susan

Submitted by aquila316 on Mon, 2006-06-05 - 06:52

Hello Lisa, my name is Susan and I have been living with Temporal Lobe Epilepsy (TLE) for more time than I care to think about. All together I have absence, tonic-clonic (gran mal), simple and complex partial seizures. It is the partial sz's that are located in my temporal lobes, and the reason I had to answer your post. Obviously I see that you and the doctors have done several tests already, and that answers that question. Deja Vu is something I think almost all of us have more regularly than the rest of the population, but it was the other symptoms that caught my eye. The first thing I notice is my aura (warning of a sz) consisting of an odor and a strange tightening of stomach muscles. The next sensation is usually profuse sweating (no matter what the temp) and in the air conditioning, once the spell is over, that turns into a nice cold, clammy, wet feeling. What happens during the complex partials and I can't really say, because I only remember the aura, I don't loose consciousness, but I am no longer in my own body (the only way I can describe this...it's very strange). The first symptom that appears when the sz is ending, unfortunately, is severe nausea. This sometimes actually makes me physically ill, but most of the time if I breathe deeply it will go away without a mad rush for the ladies room (ppl at work sometimes joke and ask if I am pregnant---I hate that). Now, I am told all the time and it is documented extensively, that I smack my lips during partials, and that it is extremely common. I found out that that is from the nausea, my mouth starts to salivate, I have that ill feeling, and smack my lips to try to avoid throwing up (it only took 33 years to figure out that one). Lastly, if he is feeling tired, and getting headaches, I've noticed that myself, and quite a few others have the same 2 symptoms after having sz's for a while. For example, if I have partials all night (the night before last) the next day I am very tired, and I usually, not always, have a headache. Now, if I get a full-blown migraine, with the light sensitivity, as well as the ill feeling, that usually means I have a night of partials to look forward in the near future, usually within the next day or 2. I hope this information can help you a bit. I will say there is a good deal of literature on TLE and partial sz's on Epilepsy.com, as well as personal experiences, and information from people who know what it is like first hand. Good luck to you, your son, and family, Susan

Hi Lisa. If you are going to

Submitted by solis on Tue, 2006-06-06 - 01:22

Hi Lisa. If you are going to a typical neurologist I'm not surprised they can't answer questions. (been there!) The best chance you'll have at getting your son controlled is via an epileptologist = a neurologist that specilaized (and focuses on) the over 40 types of epilepsy. I have had simple and complex partials since I was three. My GP finally sent me to an epileptologist after I'd gone though all the neurologists at his hospital. After seeing her (at 39yrs), I was immediately controlled for the first time in my entire life. I have some pages for you to read..they should look very familar. (www.epilepsy.com is an excellent site for learning) Temporal Lobe Epilepsy ( I also have it) http://www.epilepsy.com/epilepsy/epilepsy_temporallobe.html Simple Partial Seizures http://www.epilepsy.com/epilepsy/epilepsy_temporallobe.html Complex Partial Seizures http://www.epilepsy.com/epilepsy/seizure_complexpartial.html Surgery http://www.epilepsy.com/epilepsy/surgery.html Temporal Lobe Epilepsy straddles between neurology and psychiatry; as, far more than other seizures, TLE has many psychiatric symptoms. http://www.psychiatrictimes.com/p950927.html Also, unlike Absence Epilepsy, and some pediatric types, temporal lobe epilepsy is NOT typically outgrown. Bottom line..Not treating seizures could cause them to get worsen & some types of seizures can have a permanent effect on the brain. You MUST use the meds to combat the problem immediately. That may not work, but try it. Then, after trying, if your specialist believes you have had no luck with meds.... your child could also (possibly) have brain surgery. It sounds scary but it's frequent today for temporal lobe epilepsy. (I had my surgery last January) Wishing you luck & hope the info helps ~sol