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Temporal Lobe Epilepsy - Simple partial Seizures

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

Hi Jodi, Sounds very similar

Hi Jodi, Sounds very similar to my boyfriend's story who has TLE http://anepilepticlife.com/

Hi Dee, Sounds very similar

Hi Dee, Sounds very similar to my boyfriend's story who has TLE http://anepilepticlife.com/

Hi Jodi, Sounds very similar

Hi Jodi, Sounds very similar to my boyfriend's story who has TLE http://anepilepticlife.com/

Hi Jodi, Sounds very similar

Hi Jodi, Sounds very similar to my boyfriend's story who has TLE http://anepilepticlife.com/

Hi Dee, Sounds very similar

Hi Dee, Sounds very similar to my boyfriend's story who has TLE http://anepilepticlife.com/

Hi Lizette, Sounds very

Hi Lizette, Sounds very similar to my boyfriend's story who has TLE http://anepilepticlife.com/

Re: Temporal Lobe Epilepsy - Simple partial Seizures

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

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

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

Re: Temporal Lobe Epilepsy - Simple partial Seizures

Hi Lisa,

I have a 10 year old son with rolandic epilepsy. He was diagnosed two years ago and believe me, I know how you feel. My husband and I decided to hold off on medicating even though his neurologist recommended it. At that point he had only had two simple partial seizures and we were very concerned about side effects of medication. After making the decision to wait on the medication, my son had a few more simple partial seizures. We thought we could handle it. He wasn't losing consciousness, even though he couldn't respond to us until the seizure was over. Then he had his first tonic clonic (grand mal). After that we put him on medication. He started taking Trileptal in Sept. of 2004 and was still having seizures...less severe because of the medication, but still having seizures. Now he is on Lamictal and we're still working on getting the dosage right. I am not saying that your son will have a grand mal, just giving you our personal story. Our neurologist told us that if you don't do something to control the seizures, they can sometimes continue to get worse. We had done a lot of research ourselves and didn't really find much to support that, but in our case it turned out to be true. It's hard and can be consuming at times. I hope this helps you. Good luck.

Re: Re: Temporal Lobe Epilepsy - Simple partial Seizures

Hey Christine,
I see your post was a year ago but my ten year old daughter has just been diagnosed with rolandic or childhood epilepsy with central tempral spikes (BECTS). I was wondering how close this was to your case and how the meds worked out for you all. Our first neuro visit this week really didn't give us much more info than what I already learned on the net. The neuro reccomended no meds for now unless we wanted her on them and then he would reccomend Keppra or Neurontin
we are torn on what to do because of the side affects. Her first and only seizure so far has been a tonic clonic and it was abnormally long..about fifteen minutes. I never want her go through that again. Right now we are not medicating and are wondering when the next seizure will or will not come. Anyone else out there who has any info at all on this type of epilepsy please tell me your story. Thanks Debi

Re: Temporal Lobe Epilepsy - Simple partial Seizures

My daughter is 5 now and has simple partial and complex partial seizures.what I recently learned(as a few days ago)is that although her periods of starring are very short less than a minute her memory is being affected.after a spell she is unable to retain information for up to two hrs after it occurs.the question to medicate is never easy.my husband and i are both firefighters and see the complications from seizure medications.we researched to find the meds we were both comfortable with.we started her on trileptal.it is fairly safe.It doesn't affect the kidneys or liver or require routine blood test.another one that we are switching her to is lamictal.it helps with memory and is semilar to trileptal.if you have a good ped.talk to him about your options as well.I no for me having my daughter on meds helped me to rest easier knowing that it helps her

Hi Lisa, I found some

Hi Lisa,

I found some additional information:

"Will I always have epilepsy?"
http://www.epilepsy.com/101/ep101_duration.html

Here are some pages dedicated to parents of children with epilepsy
http://www.epilepsy.com/info/family_kids_diagnosis.html

I hope I have given you some helpful information..

Please, try to remember that 3/4 of people with E live normal lives with perfectly controlled seizures.

~sol

Re: Temporal Lobe Epilepsy - Simple partial Seizures

Lisa, Hi my name is Michele and I have a 11 year old son that has been having the same side effects as your son for almost a year. I talked to our family doctor who kept telling me it was normal to have deja vu at this age. He would have these visions then vomit almost right after. He also is a bright child, but starting having a hard time in school. His teachers said he would drift away for minutes then return to himself. I finally ask to see a specialist. We seen him this past wed. and he belives he is having simple partial seizures. He also has had a 6 year history of migraines. He is scheduled for an eeg on monday and an mri. He was put on Tompax.

Re: Temporal Lobe Epilepsy - Simple partial Seizures

My daughter's symptoms are an exact match to what you describe! She is 12 now and they started 4 years ago. My reading suggested that EEG confirmed TLE usually is less responsive to medication, and that it is rarely confined only to childhood. My daughter also has celiac, and with the diet her seizures are controlled.

Re: Temporal Lobe Epilepsy - Simple partial Seizures

hi Lisa,

I started having partial seizures when I was an adolescent. it was a lot of deja vu, daydreaming, losing track of where I was, etc. my parents decided against treatment. unfortunately, the results of this decision were that at 27 I had a grad mal seizure during which I fractured my skull. it was a long road back to normalcy. I am under control now (9 years later) and have been for about 8 of those years.

None of these experiences have effected my intelligence ( I became a doctor). I do wish, however, that my parents had decided to treat my epilepsy at an early age so that maybe I could have avoided the grand mal. even just the chance to have avoided it would have been worth it, because the injury caused by the seizure resulted in an almost total loss of memory of my only child as a baby.

I would encourage you to treat your son. he needs to know how to manage his epilepsy. this can make his life much better. repeated episodes of deja vu may not seem very significant or bad, but trust me, they are. it is very draining. and there is no need for him to have to go through this period of his life with all that added pressure. I have learned to look at it not as a burden, but a reason to be thankful that medicine has advanced far enough to help me with my condition.

hope my story helps. good luck to you and your son.

Re: Temporal Lobe Epilepsy - Simple partial Seizures

Hi Lisa,
My 11month old son was recently dx. with Complex-Partial Epilepsy. The way the neurologist explained it to me was that "Seizures beget Seizures"---they said the brain is a learning organ and the medicine is essentially designed to teach the brain to not keep having seizures. In otherwords, no treatment=more seizures. I don't know if that's true for every type of not but it would be worth asking about. I personally was very hesitant to give my baby any medication but "Seizures beget Seizures" spoke volumes to me. Good Luck!

Re: Temporal Lobe Epilepsy - Simple partial Seizures

Just wanted to give you guys a little insight on my own personal experience. I am 22 years old. I was just diagnosed with temporal lobe epilepsy, and simple partial seizures.

Basically, I had one episode where my vision kind of went. What I mean by that was flashing lights so badly in my vision, that I couldn't make out anything around me. This had happened to me before... .however, I always thought it was migraines. On this particular day it was a lot worse than usual. As this was going on I started to hear voices. And then I started seeing people from my past. It was the most awful thing that I have ever been through. I cried for hours after the episode.

After this I began having panic attacks. The panic attacks started off like once every two weeks. Then once a week, and after a few months they were daily. I was panicking because nothing around me felt real. I felt like I was in a dream state, I felt foggy, out of my body. These are the most awful experiences. They are scary, and they completely diminished my qualilty of life.

After having an EEG and confirmed results, I started Lamictal. I am only taking 100mg a day; but I am now not having episodes daily. I still have a few a month; but I don't have my dose right.

I think it is important to put your kids on medicine, if they have been diagnosed with seizures. Only because I waitied, and it got to the point, where I was having them everyday and crying for hours. They do get worse, when not treated. It is important to stop them before they get too bad. I didn't have any problems with Lamictal. No bad side effects; nothing. I had a few headaches, but its better than walking through life like your a zombie. Any more questions on simple partial seizures feel free to email me.

Re: Temporal Lobe Epilepsy - Simple partial Seizures

thank you! A concerned friend!

My friend is experenced the voices for so long he has teamed up with them and does what they say, and nothing will stop him till the forrest and the world is saved by him. " He has been choose the THE CHOOSEN ONE." And nothing will stand in his way or slow him down to keep him from what he believes he is here for and that is to save the world. But since he has joined forces with them because he had no way to fight them back. And he will not take his meds. because they told him that they are against him and are bad for him.. There is so much more I could talk about, I need to come up with some answers. Before someone gets killed or very sercisely hurt...Surgeory is out of the question. He has excaped from our Pine View Behavioral Health Center three times.... Somebody please help?????

Re: Temporal Lobe Epilepsy - Simple partial Seizures

I'm sorry if this is rambling a bit but this is how I write. When I tell people about my experiences I get to shaking and pretty much panic attack. So it's hard to write. I love writing though but hate the state it puts me in so I tend to steer clear of it.

I know this is an old post but I had to reply. This is the first time I've heard someone say they felt like they were here to save the world. I have left TLE and have the same feeling. My auras are religious in nature. I've always seen god and walked with him. Everything in this "hallucination" is destroyed my whole city. God tells me something but I never remember. I get the feeling that if I could only remember I could save the world. I feel like its my mission to tell everyone I can. My interpretation of everything being destroyed is that we're destroying the earth and on a direct path to destruction. Everytime i see this i have a gran mal seizure. my simple partials are nowhere near this but tie into it. It's déjà vu like a flashback of a dream ive had but i cant remember ever having this dream. I never see god in my partials but the destruction is still there fire trucks and ambulances everywhere. This is brief 15-20 secs with after effects lasting 2-4 minutes. I don't drive no more because of this I see a fire tuck and here comes a partial. I haven't had a seizure in almost a year and to tell you the truth in a weird way I miss walking with god and having these "visions". But I'm glad I don't have seizures anymore. Another weird thing is I'm atheist been that way since my seizures first started in my early teens. I just can't believe that feeling just isn't there anymore.

To anyone else trying to decide if they should be on meds. Get on them. It might take time to find the right ones but its worth it in the end.

Re: Re: Temporal Lobe Epilepsy - Simple partial Seizures

Hi Lisa,

Your situation sounds very very similar to my own experiences. My son had occasional episodes of De Ja Vu which would normally only last a minute or two. This began just before his 10th birthday (he's now 13). I took him to my GP who refered him to hospital. Unfortunately his condition was not considered urgent and his appointment was scheduled for several months later (we live in England where health care is very different). During this time the episodes increased in frequency and he began feeling sick, tired and had headaches after. We eventually saw a neuro who diagnosed TL epilepsy (simple and complex partial seizures) and gave meds as an option. I felt it was to soon to consider this as we were coping fairly well. Several months later Jake became ill with a stomach bug. Nothing serious but his temperature was up. Later that day he told me he felt funny and then had several grand mal/tonic colonic seizures. I had to call paramedics and he was given meds to stop the seizures and rushed to hospital. Fortunately he suffered no long term effects. Doctors advised me that his simple/complex seizures had spread across his brain due to his temperature and that this was less likely to happen if he had been on meds. We saw his neuro and started on meds the following day. Jake was included in the discussion and told me he wanted to start meds and take control of the seizures. After the Tonic Colonic seizure Jakes simple/complex seizures increased alot in frequency. I dont know if this was because of the Tonic Colonic seizure or the introduction of the meds but I felt very guilty for both. I agree that it is a hard decision to make and no parent wants to give their child drugs. In our case it has taken several years and different meds to finally find a drug for Jake but we now feel as though we have turned a corner. Jake has not had a seizure for a few months (he now takes Keppra) and tells me he feels like himself for the first time in years. He is very open and honest about his Epilepsy and copes very well with taking his meds. Your son may continue with his partial seizures and never have another type of seizure however his epilepsy may also progress as Jake's did. I wish you and your son luck and hope you make the decision thats right for you both. Let me know how you get on. Lisa

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