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Children with Epilepsy


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Since young children don't communicate symtoms well I wanted to start a thread for parents to share thier experiences in dealing with thier children diagnosed with epilepsy.

Our seven your old experienced a Grand mal siezure about 5 months ago. Not knowing what the hell was happening to her we had her life flighted. The EEG showed a slight abnormality in the front temporal lobe, however, the doc would not diagnose her with only one seizure. Sure enough she had another seizure three months later. She was diagnosed partial complex. She has these seizures in the early mornings in her sleep. The second seizure was not nearly as voilent as the first .The doc put her on Tegratol 100mg to start per day going to 100mg three times a day after the first week.

I would be interested to hear parents experience with Tegratol ?

This little girl HATES meds. We can hide them in juice,oatmeal etc no luck !!

any suggestions ?

We were told there was a good chance she would grow out of this ?

If she were not on the meds could we expect the seizures to cycle every three months ?

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Konrad,

I can't offer a whole lot of feedback, simply because my recollection of my youngest boy having seizures happened more than 20 years ago and I can't recall much of it. Paul began having seizures at about age 4, but wasn't immediately placed on Tegratol. His seizures were apparantly trigged by a series of concussions, the most serious of which left him unconscious for several minutes. He was an incredibly active kid who had a habit of falling out of trees and backwards off of slides. After that one really serious concussion, we were told to remove all objects from his room that might cause injury if he were to thrash around and collide with them during his sleep.

Once put on it, Tegratol seemed to control the seizures just fine, although there were occasions when Paul would begin to 'break through' the medication. My dogs were incredibly sensitive to this and would bark at Paul as if he was a total stranger whenever a partial breakthough occured. The good news is that my son completely grew out of this by around 12 years of age, so this sort of healing really does take place.

I just picked my wife's brain about this and she tells me the Tegratol was a very small pill that even our 4 y.o. son was able to swallow without complaint. She also says the med made him quite drowsy.

As far as how often your daughter might cycle through her seizures I have not a clue. There seemed to be no rhyme or reason to the way Paul's seizures occured.

Sam

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Hey Konrad...I was dianosed with juvenile myoclonic epilepsy the day before I turned 15. My parents were completely freaked out...and....so was I. After a CAT, MRI, and several EEGs showing abnormal results...I think either the MRI or CAT showed a lesion on the right frontal lobe (I think, its been awhile)...and the all the EEGs Ive ever had throughout my life has shown 3 second spikes...which is common with JME.

After my first grand mal, the doctors wanted to wait and see what happenned, and of course I had others...but I was put on phenobarbital and they kept increasing it until I was too zombified...finally my doctor put me on Depakote, but I was reeling from med switches, trying to adjust, a total space case, grades failing in school, so my parents asked that I be switched off of depakote and on to something else. My doctors put me on Dylantin...I got a bad rash...a very VERY bad rash. One that put me in the ICU. So my half ass doctor at the time decided on tegretol, and I took Tegretol for 15 years. Unfortunately, Tegretol didnt work for me very well for those years, as I found out later on, it actually aggravates JME, and now I am on Keppra, Topamax, and Depakote ER...which is working fine for me now. Don't get me wrong, Tegretol is a fine drug, just didnt work for my flavor of epilepsy.

Pheeewww. So thats my story of epilepsy so far. I might also mention that juevenile myoclonic epilepsy (what I have) isnt one of those you 'grow out of', it does tend to show up when youre young, ussually around adolescence, but it stays, but is managable.

As far as your little girls meds go, Im sorry she hates them, have you tried smoothies? I had to give my son some medicine once that he absolutely HATED but I hid it in a bannana and strawberry smoothie (with some sugar) and he knew nothing...

Also, this may be something she grows out of, maybe not...only time will tell...but dont EVER stop meds without a doctors STRICT supuervision. Hope some of this helps...

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