New to the forum, son with seizure disorder.
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UPDATED: Fri, 05/16/2008 - 6:27am
BadgerMom
New to the forum, son with seizure disorder.
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Hi everyone,
I am new to the forum. My 8 year old suffers from seizures. They started when he was 4, and they started rather quickly. Within a day, I noticed there were times when he just wasn't "there" and afterwards his speech was very slow and slurred. Sometimes his face would twitch. I started to keep track and noticed this was happening about every hour. I called an made an appointment with his PCP for the next day, but that night loomed long and I started to get scared and took him to the ER, they were basically going to just send us home when he had an episode in front of the doctor. (thank goodness) they admitted him and did a CAT scan (normal) put him on some medicine (can't remember what) with an appointment to a nuerologist.
The nurerologist put him on Trileptol and things were fine. I actually started to think that this was a thing of the past and something he had outgrown. Well, February he had a break through seizure in the middle of the night, and within 3 weeks he was having about 20 a day. Some very mild, others pretty severe...lots of drooling, facial twitching and arm movements, loss of speech for quite awhile afterwards. He's starting to pick up on "feeling like a seizure will start". Anyways, EEG study was done and he had every sympton we had complained about out on camera within the first 6 hours of the study, so we were only there 1 night. Found out that he was actually having 1 seizure with no visiable symptons on one side of the frontal lobe, but that would trigger the other seizure on the other side with the symptons. He is now taking the Trieptol and they have him on Topamax. His seizures have dropped from 20 a day (that we see symptons for) to about 4-6 a week, but he complains of eye pain is having some emotional outbursts....either very weepy or very angry, we see the neurologist again in 2 weeks, my question is....I have been guilty of being somewhat laissez-faire with his neurologist and her treatment plan for him. What kind of questions should I be asking? Sorry for the long post, just wanted to explain his history.
Thanks for listening and any advice.
BadgerMom
By BadgerMom at Fri, 05/16/2008 - 6:27am | 28 views | 4 comments
Topic: New to Epilepsy.com
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Recent Comments on this Discussion
Badgermom....I am also new to the forum and have just written a small peice. One of the things that I mentioned was that my daughter also seems to be having some sort of pain( ? ) sensation in her eye that causes her to cry out and seem very distressed about for a minute or so then it stops and she is fine again? My husband was very frustrated last night when it was happening and kept asking her "what is the matter?" she couldnt answer him and became very angry at him. This has been happening since just before christmas for her and is still unexplained. Could it be yet another type of seizure?
welcome to the site badger mom....... sorry to hear about your son's sz's.....keep a journal on everything that happens , so you can ask the dr. when you see him/her.... remember there are no stupid questions you can ask when it comes to your son's health....take care and god bless.....
Hello BadgerMom
I have a 13 year old daughter with epilepsy. She has been on Topamax, Keppra, Dilantin and now she is on Trileptal. None of the medications were working and she was having starring seizures and confusion to where she would have no idea what was happening around her until she than started having Grand Mal's and to say the least this was very scary. Her neurologist sent us to Miami Children's Hospital where she was put on the Trileptal. That was March of 076 and she went seizure free until about March of this year when she started having break-thrus. She is now on the last dose possible of the Trileptal.
As far as talking to the Dr. I would suggest keeping a lot of notes in between your visits. I keep a journal and write things down everyday that she has a seizure or does not seem herself because I know that I will not remember "everything" when it comes time for the Dr. visit.
Anyways, I saw that you wrote that your son was having "eye pain" while on the Trileptal. My daughter started having eye problems about 6mths ago. She said that her vision get's blurry and her eye's feel funny. Whenever I ask her to try and explain it she says she can't explain the feeling but it's enough that she says it "scares" her when it's happening. Has your son explained the feeling that he has in his eyes? Im just wondering if it's just a side effect of the Trileptal.
Good luck to you and your family
cg
The only thing I can say is I took Topomoax for a very short period of time and it made me feel very strange. I had times where I would have images in my head of suicide and I started having panic attacks along with a little bit of anger. I called my neurologist after just a couple of weeks of these symptoms and he immediately took me off of Topamax. It was a very scary thing for me as I had never experienced these types of thoughts and I could actually see images of it in my head. I know it is different for each individual, but I feel very strongly against Topamax because of that. I hope things work out for your son.