My 3 Year Old Has Epilepsy, I have a few questions for people who have them.

[MyBabyGirlAbigailFaith]

My 3 year old daughter has epilepsy and starting having them (that we know of) Dec. 2006. She was diagnosed in Jan. 2007 and at first they were "still" falling down seizures and a large amount of blank stares with pupils very big. She is now starting to yell out a scream or starts asking for her now dead great-grandmother and then goes into a strong convulsion that makes her very tight with large pupils and of course she has always had the draining of fluids from the mouth. My question is: When she starts to scream right before going into one, does this mean she is in pain? Is she hurting? I can bear to hear the scream b/c she acts like its hurting her. I know that her doctors say that she cannot feel it, but I want to know from someone who actually has them. She also acts like she is very uncomfortable and cannot sit still right before one hits and always tries to come to me right before she has one.
Is there a reason that she never talks about her Mamaw any other time except right before she goes into one? She has had seizures up to 25 minutes before and also as small as 10 seconds. And they keep getting worse. She has now had 9 seizures within the past 3 days and it didnt used to be that frequent. I am scared to death for her b/c she is so helpless and I had never saw a seizure before hers started. Please someone let me know wether or not she is hurting.

[POSITIVEPERSON]

My husband asked the same thing if I was hurting,because I always screamed for help. And I keep asking or looking for my mother who died in 1987. I have no memory of this.
The only szs that hurt me were the withdrawel szs ,because they are so violent.

I would suggest from my own expereience is check out a homeopathy Dr. I have been using that Dr for 1-1/2 now for my epilepsy. I am truly satisfied . I have weaned off my
meds ,I am down to 50 mgs of mysoline . Thats after 39 yrs of meds ,my body is exhusted. Your child has a great chance of stopping her szs and weaning off all her meds. Which is such a miracle.

Welcome to the boards

Riva

[Bernard]

... She is now starting to yell out a scream or starts asking for her now dead great-grandmother and then goes into a strong convulsion that makes her very tight with large pupils and of course she has always had the draining of fluids from the mouth. My question is: When she starts to scream right before going into one, does this mean she is in pain? Is she hurting?

I have witnessed a similar phenomena with my wife at times. She starts to moan/scream as she enters the seizure. Of course, she never remembers this when she regains consciousness, but I always got the impression that she knew she was about to have the seizure and was trying to cry out - like "Oh no".

Is there a reason that she never talks about her Mamaw any other time except right before she goes into one?

It's a touchy subject on epilepsy forums. Some people strongly believe epilepsy has a relation to a/the spirit world and others think its bunk. When seizures involve the temporal lobe, people can experience all kinds of strange things.

I wouldn't be surprised if the source of her seizures are close to a spot in the brain where memories of Mamaw are stored. I'm not sure if there has ever been a study done correlating seizure activity with specific memories, but it sounds like something worth looking into.

Another possibility is that she has a strong emotion tied to her memories of Mamaw that are stressful to her. Stress is known to be a seizure trigger.

She has had seizures up to 25 minutes before and also as small as 10 seconds. And they keep getting worse. She has now had 9 seizures within the past 3 days and it didnt used to be that frequent. I am scared to death for her b/c she is so helpless and I had never saw a seizure before hers started. Please someone let me know wether or not she is hurting.

I'm so sorry to hear that her seizures are getting worse (or more frequent). Has she been on any medications since her diagnosis? Did they help? You should really call her neurologist or epileptologist for immediate attention IMO. Getting the seizures controlled early is important.

If she is like my 3yo boy, she probably likes to eat sweet things, but I would recommend (I'm not a doctor - just been around a bit) restricting all simple sugars (ie. candies, cake, soda, etc.) as much as possible.

[MyBabyGirlAbigailFaith]

She started out on trileptal and she had a reaction that actually made her throw up badly after her first dose. She was also on keppra which made her run into walls and about knock her self out. I have never heard that this could do this. Then we put her on topamax sprinkle caps which made her skin feel like gator skin and she was always itchy. Now she is back on the keppra b/c thats what her dr. wanted. She is very hyper on it and runs into walls w/o knowing she is going to. But they also put her on clonidine to try and calm her down so she doesnt do that. And so far it has calmed her down alot.

[MyBabyGirlAbigailFaith]

What are withdrawl seizures and what is the difference in regular seizures? Thanks so much.

[POSITIVEPERSON]

Withdrawel szs , are tougher because my body is reacting to not having a med like mysoline which turns into phenobarb in the body. I withdrawel seizure is when they take a med away to fast and your body reacts with a violent seizure.

I hope I explained that well . Some meds pple have to stay on for life because its so difficult to get off.

Riva