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i am heart broken and ... so confused!!!
Sat, 11/13/2004 - 14:57Topic: Family & Friends
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 Mrscownz on Tue, 2004-08-17 - 03:51
nnchau,Hello. I have a son who is 5 who sounds very much like your daughter. His seizures first happened when he was 18 months old & then they stopped. But they started again just before he turned 4. He has complex partial seizures, which involve body movement, however he is often ¨responsive" during the seizure - but he does not really know what is happening even though he appears to. His MRI also came back completely clear, and it took a sleep deprived EEG to confirm the diagnosis of epilepsy. He is on Tegretol - he started on the liquid form, but then about 6 months ago began taking control released tablets as he began having break through seizures during the day. He is completely seizure free during the day at the moment, but still has a few at night.I was devastated when I found out that Cameron had epilepsy - the last thing you want is for something to be wrong with your beautiful child - but I found myself being thankful that it was not an illness that was likely to take him from me and that we were very lucky that his condition could be controlled with medication. We need to be thankful that it is not a terminal condition and hold on to the hope that they will outgrow this. Our Paediatrician is hopeful that Cameron will outgrow it - however I think this is more likely if we can get him completely seizure free and this is not happening.I want to assure you that although your child may have epilepsy, she can still do very well. Cameron is a very bright and happy child. He has just started school and is doing very well and is ahead of many of his peers with reading and literacy. Give the Tegretol time to build up in your daughters system and hopefully it will stop the seizures.Please contact me if you want to talk to another parent in a similar situation.Best wishes.Michelle
RE: RE: i am heart broken and ... so confused!!!
Submitted by nnchau on Tue, 2004-11-09 - 03:57
hi all, it's me again. it's quite along time since my baby started her treatment with tegretol, she at first seemed to response to the med well but still not completely seizure free, so that her doc. had to increase her dosage step by step and now she already got her max. dosage, 250mg for her 10kg weight. unfortunately, last sunday at midnight of sat. and about 2.00am to 5.00am she had many seizures and her siezures looked more ... serious than before, not only her right hand shaking, but maybe all the right part of her body, her face and she cried a lot, almost screamed out, and seemed so scary that she cling to me, the seizures happened about i think every 5-15minutes in 2.5hrs!, we, my husband and i felt so shocked and frustrated. i went to her doc in the morning and the doc. described neurontin 300mg (1/4 tablet a day) for a week. but sunday evening (from 4.30pm to 5.00 ) and last night she still has some seizures. we are so worried, why her condition became bad, is that she is one of the cases which can not be controlled completely by antisiezure medicine, monotherapy is a good choice but now she has to combine 2 kinds og med, will it be any harm to her health???? her doc told me that as my baby's MRI is clear so there nothing to worry so much but i can't help as to look her seizure became so bad, not only the severity but also the number of seizures??? any one can tell me something about my baby's condition??? thank you
RE: i am heart broken and ... so confused!!!
Submitted by seeker2 on Wed, 2004-08-11 - 14:37
Hi.
Keep talking to her, and sharing with her all that you are now.
Learn as much as you can from the articles upon here that deal with pediatric epilepsy,and the syndromes and descriptions to enable you to build up a picture that you can discuss with her doctor when you go see them.This website has people that do understand and are willing to help and offer support as and when you need it.The others do as well,and have good info and people that again can offer support to you.
Research is ongoing all the time and one day there may just be something that will suit her better than right now.
You can get through this.Your post shows that you are willing to learn and want the best for her.Involve her father in this and allow him to help you to help her.Support each other through this,and whilst doing so pass on what you have learned and educate those around you who then maybe can understand and educate others while they are learning.
Hi.
Keep talking to her, and sharing with her all that you are now.
Learn as much as you can from the articles upon here that deal with pediatric epilepsy,and the syndromes and descriptions to enable you to build up a picture that you can discuss with her doctor when you go see them.This website has people that do understand and are willing to help and offer support as and when you need it.The others do as well,and have good info and people that again can offer support to you.
Research is ongoing all the time and one day there may just be something that will suit her better than right now.
You can get through this.Your post shows that you are willing to learn and want the best for her.Involve her father in this and allow him to help you to help her.Support each other through this,and whilst doing so pass on what you have learned and educate those around you who then maybe can understand and educate others while they are learning.