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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 Doozie on Mon, 2007-08-27 - 04:16
This is my very first time to write anything here. I am feeling so worried. My 10 year old son just had another tonic clonic seizure at 10:05 this evening. He is sound asleep now, peacefully,next to my husband. I am wide awake trying to figure out what we can do to help him. All of his nine big seizures have been within the first hour of falling asleep. Thankfully he is safe in bed when it happens, but it is still heartbreaking. He takes lamictal...300MG per day. I will call the DR in the morning to see if we need to increase his meds. Each seizure feels like such a setback. He is a normal, athletic, smart 10 year old in every other way. The seizures are so scary! Each seizure seems to really take a toll on him. Tonight his speech seemed to take longer to return to normal. He was so frightened when he came out of it. He could not see us, talk or move his left side for 20 or so minutes after the seizure. Is this similar to what happens to your child? I so wish I could help him.
Thank you~
Doozie
Re: Re: Re: I can't believe I'm here, but I am (Absence Seizures
Submitted by mary1029 on Fri, 2007-08-31 - 13:21
Just wanted to say I hope your son is doing better. Mine will be 10 on Monday and so I feel a certain empathy with you. My son is so precious to me and I am having a really hard time accepting that he has this-he has always been so happy and easygoing and "normal!" He missed 2 days of school this week because he could not keep his eyes open. I have no idea what this is and it is worrying me. He is also dizzy when this happens and I just wonder if it is a side effect of Keppra. The nurse at the Drs office says they think he is having some type of seizure activity at night while he sleeps. I have slept with him and there is nothing I can see, but they say it can be something that is not apparent. Very confusing...but I just wanted to tell you that I will be thinking about you and your son and I pray that he is doing better!
Re: I can't believe I'm here, but I am (Absence Seizures)
Submitted by mary1029 on Wed, 2007-08-15 - 10:50
Just wanted to say that I am in your shoes also-I can't believe I am here! I have a beautiful, sweet, smart 9yo son that had a seizure in April that completely shocked us. We were hoping and praying that is was a one time thing, but the pediatric neurologist that we saw said his EEG showed some abnormalities and that he was at risk to have another. Well, we haven't had another seizure that we know of but he had two days this summer where he was so sleepy he could not keep his eyes open. The neurologist believes that he was having some type of mild seizure in his sleep and recommended medication. We started him on Keppra a few weeks ago and we have not had any more episodes like that. But now-after learning about absence seizures-I think he has been having these for a while. We always thought he was just "thinking"-but now I think they are absence seizures. He will just "zone out" for a second or 2 and then come right back. I never thought much of it but now I think it is associated with this. He started 4th grade yesterday, and I feel like I need to tell his teachers what is going on and that he is not daydreaming or not paying attention. He is such a good student and has never had any type of behavior problem. I went to talk to the office staff at school today and found myself in tears having to even talk about all of this! It is so hard, but I am very happy to have found this board. I feel like I finally have someone to talk to about all of this!! Mary