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I can't believe I'm here, but I am (Absence Seizures)
Tue, 06/26/2007 - 19:39Topic: Parents & Caregivers
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: Re: I can't believe I'm here, but I am (Absence Seizures)
Submitted by sugarsue on Sun, 2007-08-12 - 20:01
Good luck to you and your daughter. It is so upsetting to get this news. But knowing is better so you can get her the help she needs. I was warned of learning disabilities as well. My daughter is very smart and has not had trouble yet but she is medicated now and doing well. Her behavior is much better. I think the seizures must make her feel a certain way that I don't understand yet and cause her to have trouble with the way she acts.
I wish you the best.
Susan
PS... Our neuro also said the biggest danger is in the water and they should not be left alone in the tub. I wanted to pass this along. My daughter is a little older so you may not have her alone yet, but I had started letting her do more on her own in the water before I learned this.
Re: Re: Re: I can't believe I'm here, but I am (Absence Seizures
Submitted by Buffie S on Wed, 2007-08-15 - 00:02
Hi Susan and Friends-
My daughter is on Zarontin. What med is your daughter on? I was worried about side effects but so far our daughter has only had mild headaches and leg cramping. It is hard to imagine medicating our little ones. But, I work in the medical field and know of physicians with seizure disorders that are under medication control...so to the previous poster...don't lose hope. We may have a long road but there is always hope. I was told by our neuro to not allow our daughter to ride her bike or do anything where a lapse of 10 secounds or more could be life threatening...the tub, the playground swings, etc. Good luck to you all and I hope this site is a much help to you as it is being for me...and this is my first night on.
Blessings and best wishes!! -Buffie
Re: I can't believe I'm here, but I am (Absence Seizures)
Submitted by Maddiecakesmom on Thu, 2007-08-09 - 16:26
My daughter is 3 and has just been diagnosed with the Absence Seizures. She has staring spells and she has the seizures in her sleep and when she is awake and some are to short for us to even notice. We have not seen the Pediatric Neuro yet, and I too am worried about the effects of the medicine being worse than the seizures themselves. We were told by the pediatrician that the seizures become a learning disability when they start school b/c they miss bits and pieces of info and that they would more than likely medicate her.