I have a 3 1/2 year old daughter who was diagnosed with generalized seizure disorder in April. they put her on phenobarbital, and it seems to be working a little bit. Her behavior has changed a lot, she is out of control, i can no longer get her to go to bed at a good hour. I still do not know enough about epliepsy to fully understand it. Will I loose my child to this?

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Thank You so much for your reply.

Don't panic - I'm 52 and I've had Epilepsy since I was 10 1/2! The trouble is most of the drugs prescribed for Epilepsy are very strong and when I was on Phenobarbitone and other drugs when I was first diagnosed, I'd have days of lucidity and days when I was just a zombie. The other symtoms are that you become a little distant and unemotional. This is caused by the drugs.

It sounds like your daughter has been given too strong a dose, but I am no doctor so cannot advise. I'd take her back to whoever prescribed the dosage and ask whether it should be changed.

On the other hand your daughter may not have epilepsy because children's sweat glands don't operate when they are born and sometimes they get convulsions when their temperature goes up. This happened to me even before I was dianosed with epilepsy.

All you daughter needs (and this is speaking from experience) is to be able to lead as normal a life as possible - in other words don't over-protect her and give her lots of love and TLC but not to the detriment of your other children, if you have others. Explain to them what is going on and you will probably find that they will support their sister. When she has an episode she may come round totally confused and disorientated. At this time just reassure her with soothing words and comfort. Just like you, my parents didn't know what was going on as I didn't either, but you all find the strength to carry on and I still had friends who took me on face value and would make sure I was OK at school.

I hope your doctor can help you.

I'm sorry to hear what you are going through. My daughter started at 4 months and is 15 months now and we still don't have her seizures under control. She is on phenobarb as well, she takes 20mg twice per day. She is also on topomax and clobozam, we hope to be able to wean her off one drug soon. Did you have a blood leveling done recently? I think the doc's told me that a good phenobarb level was 107.

Good Luck and keep us posted.

hello all my name is rose i am 23 and i have grand mal petite mal and sleep seizures the others are right it is just trial and error with medication to control ur little girls seizures i am on two different meds to control mine but it took three years to rind the right meds and right dosage to get mine under control so dont give up hope your little girl will get the right meds it might just take a while but things will settle down for her the meds might not make the seizures go away all together but they will make them less frequent and some meds do disrupt behaviour but thats normal things will settle down
lots of luck
rose

First of all i would like to thank all of you for replying!!
Mscheid---what caused your daughter to have her siezure? We are going to the childerens hospital of denver on August 3 to find out the levels of her phenobarbital, the last time i took her in to find out the levels they never gave me a number, they just said that she was good. Last week we had to up her medication because she was having siezures in her sleep, she now takes 4tsp every morning (it was 3tsp. before). I know that i should be asking my doctor all these questions, but what happens if her phenobarb level is above 107?

Laughalot--I talked to my doctor about the dosage, and they feel that it is the right one for now, they did tell me that my daughter has an opposite reaction to her medication, instead of making her calm, and relaxed, it makes her hyper and a little mean. They did tell me that we can change her medication to something else, but they thought the phenobarbital was the safest for her. It was in January when my daughter started with her siezures, She had the stomach flu and she had a fever any where from 101.0 to 104.3 for eight days, and the doctors kept sending me home telling me that she would be fine, on the eighth day she had her first siezure, we went to the ER and they told me that she had Febrile Siezures. Well then she got better and then in February she started having siezures again, I took her in and they started her out on the phenobarbital without taking any tests. I got scared and i didn't want my child drugged so i took her off of it, she was fine until the end of March, she had more siezures and i took her in and they finally scheduled a EEG...........Her EEG came back so abmormal, that they told me that she had a Brain Tumor and possibly more than one. They orderd a CAT scan the very next day and it came back clear, so they diagnosed her with Epilepsy.
Thank you again for replying and thank you for all your advise!