My Daughter

Hi
sorry to hear that you are going through such a tough time.
I dont know what it is like to be a mother and go through what you are, but have you seen a movie called " first do no harm".....It has meryl streep in it.
I would strongly concider that you watch it and then you look closley at the options that you have. 7 months ago I was diagnosed with epilepsyand I was very bad. Then all of a sudden my medication began to work. Try the ketatonic diet. If you have already tried it then I guess the surgery is your last option. Just such a tiny person, going through all that and you aswell as her mother.
I just suggest watch that movie and
god bless to you I pray for you.

Yes I have seen the movie and I think the diet is a wonderful thing and I am so gratful that it is out there and is a choice for alot of parents! My daughter is the pickiest eater in the world!!!! She has a gag reflex also so when she doesnt like something she throws up very easily and she likes nothing on the diet... And I have discussed this with her and she would rather deal with seizures than to eat the foods crazy huh! I personally think that I would rather eat food I dont like than have seizures but I guess I cant say since I have never experienced it before. I would give anything to understand what it is like for her. With her being so young she doesnt describe her auras or seizures very well. It has gotton better as she gets older though. I am sorry I am just babbling thank you for replying and listening!
Mikki

Dear mikki
you can talk to me about anything. I will reply and I will listen to you and answer your questions the best that I can. I know that if I was your daughter I would rather have the seizures too then have brainsurgery. I wouldnt be able to cope it just scares me too much. You must be a strong parent and your daughter must be a strong little girl.

Thank you so much! You replied to my other post to. You seem like a very nice person and I really appriciate you talking to me. I have a hard time understanding what my daughter is going through and you and this forum have helped more than you know. She is a very strong little girl the side effects from the meds are hard to deal with for her and myself... Shegets so irritatated that I dont think she can stand to be in her own skin! What meds are you on? How old were you when you were diagnosed? What type of seizures do you have? Its nice to talk to someone who knows what my daughter(her name is tj) is dealing with.
Thank you

Hello there my name is samantha
i am 21 yrs old
i live in sydney australia
i was diagnosed with temporal lobe epilepsy 8 months ago now
i am currently on epilim(sodium valproate)ec 500mg tablets 2000 mg daily
and tegretol(cabramazapine)cr 200 mg tablets 600 mg daily.
My seizures are mostly always tonic clonic(grand mal) - full body convulsions lasting 10-20 minutes.
And I have also had the odd petit mal(absence seizure)
i have been told that my seizures fit into the category of secondary genrelised tonic clonic and simple partial seizures.
The neurologists also think that I have some ? Pseudo fits. Wich are psychogenic...Meaning non epileptic and its not uncomon for epileptic to have those esp in women they are more common. I just try not to stress out too much and hope for the best. :d

Hi mikki,

what type of seizures does tj have? Do they severely interfere with her life? Is there a chance that she may grow out of it? If there is, I wouldn't rush into surgery. It's a big deal. But if she can't live a "normal" life with the seizures, then it may be a good idea. I can identify with tj in that i'd also rather have seizures that be on the ketogenic diet! Here are my stats:

age 25.
Simple partial seizures started age 4.
Started seeing neurologist for migraines age 5.
Complex partial seizures started age 13.
Grand mal age 15.
Diagnosed with epilepsy age 15.
Finally found a good doctor age 17.
Exhausted all meds, had 3-stage surgery age 20.
Since then on depakote, diamox, and lamictal.
The surgery helped tremendously, but simple partials recently returned and I can't seem to get them back under control.

I wish you both the best. I'm also here to try to answer any questions. Maybe I can help give you tj's point of view since I was young when mine started.

jen