Hi, I am new here to help my beloved newphew

[cuty]

Hi everyone,

After reading some posts, I decided to register to be a member. So glad to find this site. My nephew was dianogsed with absence seizure epilepsy when he was 2.5 and has been being on medication for 2 years now. Recently, we were advised that he would need to be on drugs for 2-3 years more. I hardly have any knowledge and understanding about epilepsy. But, I have a feeling like something is not right and I just can neither find a proper answer from our doctor nor available information pack. I love my newphew so much and this is the reason why I am here. I will very much appreciate for any information.

The situation is my newphew had absence seizure for only 2 times (each for 2-3 seconds) before he was dianogsed. After seeing our neurologist he was sent for an EEG and a calcium-blood test. His EEG showed some abnormal waves which I have no clue which is normal or not normal. His blood test said he was slightly calcium deficient. And since then he has been on medication with Depakote. It has been more than 2 years now, and he has never ever had one single seizure. So, we just wonder if he was misdianogsed? if he does not need to be on medication any more? if there are other options?

Doctors said we had to be strict on medication or the seizure will go back and we will have to restart all over again and may have to be on it longer time. and then all the dangers if the seizure occurs when he's walking near rocks... We are frightened. We have talked to several different doctors, but all said the same thing. But, who wants to give drugs for such a long period of time into that little body?

Thank you very much for reading my post and really looking forward to your reply.

 

[Cint]

Hi cuty and welcome to CWE,

Sounds like you nephew has a caring family. Sometimes it is hard for one to know if seizures will return after being taken off medication. The doctors are playing it safe. Sometimes people can go for years without seizures while on medication, and then all of a sudden, they come back.

Here is a website with more info on childhood absence seizures:
http://www.epilepsy.com/epilepsy/epilepsy_childhoodabsence

 

[cuty]

Hi Cint,

Thank you very much for your response. Yes, in our family, we all care about each other eventhough we live far apart in different continents of the world. I myself have my own family with my own children now.

I know our doctor just wants to be safe, for his patients and for herself. But, I think she's either quite lazy or irresponsible. I have reasons to say this as every times we mention about alternative treatments like diet, vitamin supplements.... she just won't listen. She always says medication is the best proven method, all the others are not reliable.

The way I see the situation is my newphew has very mild epilepsy, ONLY 2 times before being dianogsed (compared to others often with high freqency of seizure occur) and NOT 1 SINGLE seizure after 2 years 4 months on strict medication. So, I think if he really has epilepsy, it has been well controlled. Why have to extend the medication? Considering his age and seizure condition, he should be taken off medication by now. Besides, together with abnormal electrical waves in EEG, he also had calcium deficiency when he was diagnosed? Why the doctor did not look into that issue? Maybe there was another cause of seizure that is non-epileptic?

The problem is that my nephew is living in Vietnam where all the alternative treatments are not available. Everywhere we go, they just offer medication, noone give any information about diet, vitamin supplements,... So, I want to study more about epilepsy to educate myself and my family back in Vietnam to make the best decision for my nephew.

Thank you for the link, I am going to check it out now.