Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

I can't believe I'm here, but I am (Absence Seizures)

Tue, 06/26/2007 - 19:39
My daughter has just been diagnosed with something, I don't know for sure yet but assume it's absence seizures. She's 4.5 yrs old. Right after diagnosis on Friday the neurologist went on vacation so I won't hear the actual term until July 10th but she seems text book absence with multiple seizures during her EEG. She started on Topamax on Saturday and was taken off today due to bad side effects. We start on Zonagran tomorrow. I am so saddened by the side effects I've seen so far and am not hopeful at all at the moment. Has anyone decided not to medicate? I am so anxious to find the pro's and con's and learn all about this. Because I don't understand how the seizures are affecting her, It's hard to see why medication is necessary. But as I said, I am new to this and will learn a lot I'm sure in the near future. Susan

Comments

Re: I can't believe I'm here, but I am (Absence Seizures)

Submitted by Paws1129 on Tue, 2007-06-26 - 22:38
Hi Susan, I am sorry to hear that your neurologist is on vacation that really stinks. What was the side effect of the Topamax? My ds has been taking that and Keppra since Feb. and his side effects seem to come and go. Good luck in finding out what is going on. I am new to this too and it is so overwhelming. Take care, Paws

Re: Re: I can't believe I'm here, but I am (Absence Seizures)

Submitted by sugarsue on Wed, 2007-06-27 - 07:02
I just posted this to the general board so I copied it over here for you. She was only on the Topamax for 4 days. I have not heard of Keppra yet. So far, the available medication does not sound too hopeful. :-( Her side effects were kind of like she was drunk. She'd laugh very silly and then break out crying. She would not participate in anything, couldn't put her clothes on by herself or get up into her car seat. She said her puzzles were too hard, would not color (these are her favorite things). She would forget words and what she was saying in the middle of sentences. It was heart breaking. I am so afraid to start the new medication tonight. I'm sure you will be seeing more of me here! Susan

Re: I can't believe I'm here, but I am (Absence Seizures)

Submitted by karissasmommy on Wed, 2007-06-27 - 13:53
Hi Susan, I so empathize with you. My daughter just turned 4 and was diagnosed in March with partial seizure disorder. She has only had one seizure, but her EEG showed seizure activity. We took 2 months to decide on medication. Like you, I didn't see the reason for it, and was getting very conflicted advice all over the place. Our ped. neuro wasn't helpful at all, and we're switching doctors. We have to wait until Sept. for that appointment because neuros in our area are overloaded. What finally convinced us to start her on meds was talking to an adult friend who has had partial seizures for 14 years. She challenged me to stop viewing meds as "hurting" Karissa, and see it as something that will protect her from more seizures, and perhaps giver her a chance to heal/grow out of this (the doc didn't give us high percentages for this). ANYWAY, we did start Karissa on Trileptal in mid-May, and ours SOFAR has been an easy experience. I'm not on this board much (I have 3 other little ones ages 2 and 6 *twins*) but I do check back from time to time. It has been such a blessing to find comraderie and read how other families are coping with this overwhelming experience. I recommend reading this book--it is the only place I finally got the answers I was looking for (other than this board): Epilepsy and Seizures in Childhood, a Guide (3rd Edition). Blessings, Margie

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.