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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: i am heart broken and ... so confused!!!
Submitted by nnchau on Mon, 2004-08-09 - 22:20
hi tibet2, so glad to hear from you, i almost cried when i read your reply message. this is 1st time i 'met' some one who really understands our situation and my feeling. your message encouraged me a lot, thank you very much, tibet2. |
hi tibet2, so glad to hear from you, i almost cried when i read your reply message. this is 1st time i 'met' some one who really understands our situation and my feeling. your message encouraged me a lot, thank you very much, tibet2. |
RE: i am heart broken and ... so confused!!!
Submitted by tibet2 on Mon, 2004-08-09 - 11:42
hi, i'm sorry to hear that your little girl has epilepsy. parents have a lot of questions and worry about their children. it's normal. even though i have epilepsy myself, if one of my children had epilepsy i would be worried. but in my heart, i know that epilepsy does not need to get in the way of a busy and full life. but mothers all over the world worry about their children. it sounds like your daughter is having a partial seizure - a motor seizure. if you watch carefully it will probably start with her thumb or pointer finger twitching.... tegretol or trileptal are good meds to control those sorts of seizures. you will have to give the tegretol some time before you know if it will work. when your sweet daughter has a seizure go ahead and hold her on your lap... you can rub her hand and tell her it will be ok... and you might want to make it a habit to read a book to her just then... children that age love to be read to... and that way she will be on your lap, and feel comforted. yet you won't stay focused on the seizure. if you distract her by reading a book that will help both of you cope with a seizure in a productive way... if she is too upset to be read to, then of course don't read to her. just pick her up and hold her and let her know it will be ok... maybe she would like you to sing to her... it is very difficult to know if your daughter will "outgrow" epilepsy. of course every parent wants that for their child. i hope she does. time is the best diagnostic tool for that. it's important to stop seizures so that they don't become worse. many people with the type seizure your daughter has have very successful lives. she has a mother who writes excellent english, so i think she comes from a very educated family. if you teach her, by example, that she can do well in life, i think she will. i'm curious if you have started teaching her english already. the brain of a young child is very adaptable. neuroscientists say it is "plastic" meaning it can learn new ways to adapt. since your daughter is so young i think that her brain will find ways to make up for any problems her epilepsy might give her. in english we say that kinds are "like a rubber ball, they bounce back". and they do. my friend has had epilepsy since he was a young child and he is a university professor. even though i am almost 50 i am learning spanish and am doing well at it. it is VERY good news that her MRI was clear and that there is no "structural" reason for her to have epilepsy. i just had a high resolution MRI and in spite of having had epilepsy for decades, my MRI is still entirely normal. i was worried that it would show problems with neuron death in the memory area of the brain, but it didn't. i hope you and your family have a very good day. i know you are worried. and i know you feel alone, but you aren't.