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Old 11-21-2002, 06:03 PM   #1
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Question 4yr old son newly diagnosed

Hi All,

I've never posted to any boards before, so please bear with me. My 4yr. old son has just been diagnosed with epilepsy. He had an eeg done last week which showed "obvious" abnormalities (as soon has he was hooked up, the "spikes" were apparent, and they were evident during awake and asleep time). Two days later we were seeing a neurologist who put him on Tegretol. We are increasing the dosage to 3x a day over the next 3 weeks. I am supposed to be observing him to see if the medication is working, but my biggest question is that I don't know if I've ever seen my son have a seizure, nor am I sure I would recognize when he is having one. The reason his pediatrician sent him for an eeg is because I mentioned how "out of it" he often seems. He also has had numerous tests done (mri's, xrays, blood work- all normal)due to "falling down" episodes that occured for several months when he was just two. He would fall down and not be able to walk for 20-30 minutes at a time (but fully aware of everything -he would also say his back or legs hurt when this would happen). He is a very explosive child, with severe rage or temper attacks, especially when things don't seem to go the EXACT way he needs it to. He is also very clumsy. The neuro seems to think that this is all connected due to where his "seizures" are coming from (left side - I believe he also mentioned temporal lobe - I need to double check). He can only tell me that he is having partial seizures (he said that they were not absence seizures) and he says it's really not necessary for us to find out more. Does any one have any light to shed on any of this? We are only one week into this all and I am feeling a little overwhelmed and just so confused. It just seems like there are no easy answers. Thanks for any info!

 
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Old 11-22-2002, 06:35 AM   #2
Bleubird
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i'll ask around and see if i can get any answers for u

 
Old 11-22-2002, 07:37 AM   #3
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If you can read up or do a web search on partial seizures you will see that there is a wide variety of them. Many types you do not loose consciousness, lik eyou described. Even the rage episodes you describe CAN be seizure, but is not always. If you see any rash, extreme lethargy or big behavior change in your son, let the doctor know, it may be from the med. Otherwise, educate yourself on the differnet types of seizures. Start writing down these different episodes so you can ask the neuro more specifically about them. Hang in there. You can also see if there is an Epilepsy affiliate near you. they can offer you more info

 
Old 11-22-2002, 09:26 AM   #4
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Ok now that I have bumbarded this post hehehehe ... hope any of this helps....

Partial seizures happen when the disturbance occurs in just one part of the brain, affecting whatever physical or mental activity that area controls.
Sometimes the seizure activity starts in one area of the brain and then spreads. If the whole brain is affected, it causes a generalized convulsion, or fall.
When this happens, doctors call it a partial seizure secondarily generalized.
Sometimes, changes in feeling or movement produced by the partial seizure at the beginning act as a warning of the bigger seizure to come. The warning feeling is sometimes called an aura.
Partial seizures are the most common form of seizure in adults, affecting six out of every ten people with epilepsy. Among children with epilepsy, four out of ten have partial seizures.
Partial seizures may be called simple partial seizures or complex partial seizures. The main difference between them is whether people remain fully aware or experience a change in consciousness during the episode.


 
Old 11-22-2002, 07:32 PM   #5
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Thanks so much for your information. I have been on the internet and to the library much in the last two weeks to try to get as much info as I can. If nothing else, at this point I think it helps me clarify the questions I'm needing answers to. One of the most confusing things is this whole "simple and/or complex partial seizure" thing. I just can't tell if my son is truly out of it (complex) but by the time I go to him he's recovered, or if he's just sort of out of it (simple), because he is able to respond to me. It does appear that he is "missing moments" so to speak. Yesterday as we were eating, after he had already taken a couple of bites of his sandwich, he said, "hey, who ate my sandwich?!" He appeared to be "with us" the whole time. I'm just so confused! And contrary to what my neuro is telling me, I do think it's important to know the difference! In fact, today I made an appointment with an epileptologist (sp??) to get a second opinion. I just don't know if medication is necessary for a 4year old little boy who nobody knows for sure has ever had a seizure, only a very abnormal eeg, you know what I mean? Thanks for listening and the info!

 
Old 11-23-2002, 08:29 AM   #6
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I think you'll do great with the epi. i was with the regular nero. for 3 yrs .... after switching to the epi. I couldn't believe all the more info I got on my seizures they are great!! Good Luck with your son.

 
Old 12-01-2002, 12:04 PM   #7
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Bleubird,
Thanks for your support! - I am very much looking forward to our meeting with the "epi" and hoping we will be better informed going forward. Good luck to you! God Bless!

 
Old 12-01-2002, 01:10 PM   #8
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nennery - see my previous posts by lazoo. Has your son had any high fevers, bad illnesses like meningitis, etc anything you think might have caused this? I'm desperately trying to find what caused this in my daughter.
my child has the same type of E, tle, just hers affects the abdominal area. Glad you are going to an epi - it makes a big difference. Wish I hadn't waited so long. God bless, lazoo

 
Old 12-02-2002, 08:05 PM   #9
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Lazoo,

I did just read your previous posts, and I'm so sorry to hear what is going on with your daughter! How did your appointment(s)go? What is the next course of action for you to take? I just find it so amazing that over and over again it seems as if it is the parent (usually the mother) insisting on further testing, etc., and lo and behold, something is found! You should have the peace of mind that you have been so persistent in pursuing what is wrong with your daughter and what is the best course of treatment. That fierce protection and gut instinct will guide you, I believe. I forget if you mentioned when everything started for your daughter.....did you know something was wrong right away? Did you suspect seizures?

As far as the fever or illnesses go, he did have a very high fever that I remember when he was about 2 or so....it registered 104.5 on the ear thermometer, but I also know that those can tend to either run high or register higher than what a rectal thermo would read. So I'm not really sure what it was exactly but it was obviously high.

I am so thankful for this board. There is such a wealth of information to be found. It's comforting to share and figure things out with others who understand and know what you are going through.

I will keep your daughter in my prayers, absolutely!
Take care!

 
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