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

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

Submitted by eanj on Fri, 2007-08-31 - 21:47

Tonic Clonic seizures are so hard to witness. Our son too has them in his sleep. All of our tests have come back "normal". He used to have them once every four to six months when an illness was coming on; but recently he has had three within a month. (All followed by a minor illness: cough, sore throat, etc.) He is eight now and these stared at six years of age. My daughter who is five has tonic clonic during illness and daily absence. Keep him sleeping in your room as long as your family sees fit. There is no shame to that. (See my blog on my sleep situation :) We have not begun to medicate yet. We are hesitant to because he has not had them during the day but now that they are more frequent we are probably going to. We see an epileptologist in November. Have you had an EEG? Our son also has partials that cause him to have a terrible time with speech. It scares him and I hate that. Take Care! Jean

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

Submitted by KellyS on Sat, 2007-08-25 - 23:01

Susan, I have absence seizures that started in late childhood...I went undiagnosed until I had a grand mal at age 32. I always knew that I blanked out and "lost my train of thought" or stared but when my parents inquired about it to our famiy dr. they were told it was hormones and preoccupation. It continued on into adulthood but i ignored it getting along and covering up as I had done for so long until the day I had a grand mal. Luckily, I was not behind the wheel of a car and neither myself, my daughter or anyone else was hurt. This is probably the most important reason to get her treated. It may or may not go away after she hits puberty. Most kids do outgrow it but there are a small percentage of us who don't. I guess this is why I am urging you to do something in regards to meds. Trust me, I have been on many over the last 5 years and some of them are not pretty as far as side effects go. I am currently on Keppra and have been seizure free for 4 months (just started in May). It has virtually no side effects for me. No drowsiness or anything. It also doesn't have many drug interactions which means if I need to go on an antibiotic i don't have to worry about what kind i can take. My neuro said it is very good at controlling absence seizures by itself although the FDA has approved it for adjuntive therapy only...keep in mind many seizure meds are often used for off-label uses...Europe has approved Keppra for monotherapy though. Kelly

Susan, Reading your post was

Submitted by mamapost on Thu, 2007-10-11 - 18:42

Susan, Reading your post was like looking back in time 2 years and 3 months ago. I could probably give you the exact date and time if I thought about it long enough...only because it was the beginning of the most difficult year of my life (and that includes my own childhood of psychological, physical and sexual abuse). Yes, the day my smart, beautiful, confident and all around amazing 4 year old (4 years and 4 months to be exact) began "day dreamimg". Three the first day, 6 the second, by the fifth day it was hard to say 20-50 I suppose. By the seventh day we were at Childrens Pedia. Neuro. having my daughter's first EEG. By this point I've done my own research and have a pretty good idea of what we're in for or so I thought. During the EEG, the tech. has my daughter blow for 3 minutes (hard). Aiming to please, she blows with all her might. Within 30 seconds she turns pale and asks to stop, he says no...she blows once more and on comes the longest lasting seizure yet...30 seconds (felt like 30 minutes). Feeling sick to my stomach and legs shaking, I had to sit. We were later shown the EEG with not one, but three seizures during the 30 minute long procedure (all the time necessary to make the diagnosis...Childhood Absence Epilepsy). Off to the examination room to meet the neurologist and his team. One and half hours later, we leave with our heads spinning. We were "persuaded" to have her in their study researching the effects of the medication(s) they were planning to give her, told she was developmentally advanced (in her favor) but not to have any expectations as far as learning goes for the next couple of years and given a prescription to begin Depakote sprinkles immediately if we chose not to have her in the study. Her seizures continued to increase, so we began the medication. If we were to be in the study, we would have had to wait 10 days until the neurologist handling the study would return from vacation. We were scared, no terrified! Her seizures kept increasing (up to 100+ a day now...that we could see) and she began dropping things, recking on anything she attempted to ride and having rhythmic eye and eye brow twitching. A week and half on the Depakote and she was out more than she was in "the lights were on but no one was home", I felt like my baby girl was slipping away from me one day at a time. When she was "in" she was confused and complaining of painful head sensations. Every call to her neurologist went the same "increase the medication" and or "we aren't familiar with her symptoms...could be a side effect of the medication, that's why we wanted her in the study, so we can learn more about the medications used to treat absence". I'll cont. on next It is a pacifier in her mouth...old photo, but a favorite of mine :)