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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: I can't believe I'm here, but I am (Absence Seizures)
Submitted by joi_128 on Wed, 2007-07-18 - 12:51
My daughter was also diagnosed with absence seizures (May 2, 2007). She is 8 and I am unsure of how long they were going on. We just thought that she was ignoring us. I wish I would have caught on earlier but what can I do now. Anyway she started taking Lamictal a month or so ago. I was completely shaken to my bones to give her medicine that could change the beautiful person that she is. However everything has been going smoothly. She is not up to her full intake level but we have seen a dramatic drop. From about 20 or so a day to 2-3 now. I have not seen any side effects at all, and I have looked extensively. I know each AED varies from person to person so this is simply my experience. I hope all goes well with your journey. And feel free to keep in touch.
Re: Re: I can't believe I'm here, but I am (Absence Seizures)
Submitted by sugarsue on Thu, 2007-07-19 - 15:11
Hi, I am so glad that your daughter is taking to the medicine so well! My daughter is now on Zonegran and is doing pretty well (much better than the Topomax she was on). I still observe some seizures too and they stress me out so much now that I know what they are. Thanks for the support!
Susan
Re: Re: I can't believe I'm here, but I am (Absence Seizures)
Submitted by Buffie S on Tue, 2007-08-14 - 23:54
Hi Elisa- I was reading you response...it sounds like our kids were dx'd around the same time. My daughter had a bedside seizure at our very first neuro visit and we left with a rx for zarontin/ethosuximide. My daughter is 5 and is also starting kindergarten this year. We have noticed leg cramps and headaches as side effects but not extremely painful she says only mild. However, I am still seeing 1-4 sz daily. Our EEG showed that she has numerous all day and night. We go back to the doctor next friday to discuss med options. She too has wondered with a sz...it is sooo scary. And it is true what they say "If you blink you might miss them sometime...the seizures." Hope this helps you and Susan some. i would like to hear how you son is doing on the ethosuximide. Blessings and best wishes!! -Buffie