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

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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: 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.

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.
you know i feel like... it's unfair for my daughter, for me. in the difficult condition of our country, of my own family, i have tried to save the best things and do my very best to give her all i think the best for her even thought i sometimes seemed to be an alien overhere, eg. not forcing her to eat to avoid eating disorder while most of other mommies do, reading to her since she was 10months, sleeping ritual so she can sleep on her own while most mommies don't... etc. ... sometimes i think what if i had not done such that thing, sometimes i want to blame those who have made me stressed during my pregnancy... When i read information on websites of epilepsy action of UK, epilepsy foundation US i felt a bit ... somehow calm down and content to accept the situation, but the discussion with the doctor yeasterday made me so confused, and this morning when i turn on my PC, check email, and your message comfort me a lot when i knew that you and one of your friends do well with epilepsy, so many ups and downs, i think i am getting stressed out... again thank you for your sharing my feeling and worries.
P/S: i haven't yet taught her English because i actually don't know how to teach a baby, i just help her to get used to English by singing to her( but i know very little children song, poor me?), turn on english songs on CDs, naming her dolls in English... is that enough?

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

Submitted by tibet2 on Tue, 2004-08-10 - 01:53

hi, i have to say honestly that i am glad that i have epilepsy and not one of my children. i know that, as a mother, you want to take this away from her and would gladly take it yourself. but unfortunately the world does not work that way. when something goes wrong with one of my children, i wonder if i did something to cause it. i don't think moms can help but think that way. you have to teach yourself to move beyond blaming yourself. it isn't easy, but it is part of the work of being a good mom. i still find myself blaming myself sometimes, but i try hard not to do that. my children are older, 19, 16 and 13, and of course there have been small and big problems as they grew up. i cried when my oldest got his first cold because he couldn't breathe very well and i was worried. what if he stopped breathing? what if i didn't hear him? he was only 6 weeks old and i had done everything "right" so how could he be sick when my husband and i were healthy? so if i can cry over a cold, i think you can certainly cry about epilepsy. we just need to dry the tears. sometimes a word like epilepsy or dong kinh can really hit someone hard. my friend was very upset to hear the word "epileptic" used to describe her son. somehow seizure and epilepsy did not bother her, but "your son is an epileptic" made her very sad. we both live in america, but even here the words epilepsy and epileptic have some negative associations for many people. first children benefit from their parents' attention, energy and idealism... i tried to do everything perfectly with my oldest... like you, i read to him and sang to him... i didn't let him watch television.... our house looked like a preschool! i still did a great job with the second and third children, but i wasn't as worried about doing everything perfectly. the most important things you can give your daughter are your love and your attention. she will be a happy child if she has those things. you also have to give her freedom and teach her that epilepsy is just a little bump in the road. she is your precious daughter who is sweet, lovely, lively, happy, strong, capable, curious, smart, fun loving..... and she happens to have epilepsy. but it is only a tiny, tiny part of who she is. even though you are upset right now (and i would also be upset if one of my children were just diagnosed with epilepsy and i know first hand that it does not get in the way of a full life! ) your job is to learn to make epilepsy a very small part of your daughter's life. i'm sure you are doing a great job with your daughter... i think exposure to another language is great for a child.... even if she doesn't speak english now, hearing it will help her when she learns it when she is older. i was just curious if you had started teaching her. i don't speak another language as well as you speak english, so i could never really expose my children a second language.... i did teach them little songs i knew in other languages... and i taught them small phrases and things like counting... but that's as far as it went.