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i am heart broken and ... so confused!!!

Sat, 11/13/2004 - 14:57
hi, i am from Vietnam and new to this site. i has a 21months old daughter who just been diagnosed with epilepsy, it just written down on her papers "dong kinh" - in Vietnamsese means epilepsy, i don't know what exactly type name of her seisure. she firstly took trileptal, but the number of seisures didn't slow after 5 days, then she took tegretol 1/2 of tablet 200mg x 2 times a day for 1 week, then increased to 3/4 of tablet 200mg per day and this morning her docter just described 1 tablet 200mg per day as she still has 2-4 seizures a day. well, let me dscribe her seizure, her right hand shakes uncontrollable for about form 10seconds to a minute, i think, she still completely concious, she even uses her left hand to hold her right shaking one, or give her shaking hand to me to hold it, it's so heart broken to see my little baby in that condition. her MRI is normal. you know, in VN i hardly find information about epilepsy, my friends, my colleagues know nothing about epilepsy, some even think epilepsy was something like... mad mad, it's so hard for me and i think my dear baby would have a difficult future with her epilepsy to deal with social misunderstanding about epilepsy. i'm so worried.
other problem is that when i read on web, it is said that after seizure the brain return to normal completely, but her doctor said that after seizure some nerve cells (i just translate word by word what she said, don't know if she meant neurons) would be killed, is that correct?
1 more question is that some doctors said that epilepsy in babies 2 yrs old and less are easier to cure than in older kids and adults, that means when the seizures controlled, no seisures anymore the babise would take meds in 2-3yrs afterward and she would have seizure free life, without medicince but i search on some websites i did't find any information like that, i want to know if there is any hope for my baby's epilepsy to be cured completely and she would do not have to take med for lifetime. her doctor this morning also said that epilepsy in the younger babies is the harder to cure, it's contrast with what i have been heard so i feel so confused and even get more worried about my baby's future.
can any one please help me to know more about my baby's condition, what to expect and how to take it easy, for me, for her dad and for her??what should i do when she has seizure and give me her shaking hand, should i hold it, should i say something to comfort her or just ignore and draw her attention to something else?

Comments

RE: RE: RE: i am heart broken and ... so confused!!!

Submitted by beautimouslove on Sat, 2004-11-13 - 14:57
dose is: 10-20mg/kg/dy in 2-3 divided doses, may increase every week.  so if we use the formula: 10mg x 10kg = 100mg per day. so ur child is not on the max dose... maybe u should talk to the dr about another med. i would ask for another med if it was me.  good luck, i understand ur fear. u are not alone. ur baby will be in my prayers.

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