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My son is new to epilepsy and I'M VERY NERVOUS

Thu, 04/06/2006 - 15:03
Hi. My 4 1/2 year old son was just yesterday diagnosed with childhood absense epilepsy. I have noticed for a while that he at times seems in his own world, or that he doesn't always answer when he is spoken to. But I thought he was just being a typical boy. Then he had an incident at preschool when the teacher said he zoned out for about 1 minute. His faced looked blank, his eyes glazed over. Then he came out of it and he was fine. His ped thought it could be a seizure, and after an EEG, a neurologist diagnosed it as CAE. They would like to put him on zarontin, but I am very nervous doing so because he doesn't really seem that bad to me. Has anyone else struggled with this issue? Should I get a second opinion? Does anyone have a child with CAE who is not being medicated? Any help at all would be greatly appreciated. I know absolutely nothing about this disorder.

Comments

Re: My son is new to epilepsy and I'M VERY NERVOUS

Submitted by suebear on Fri, 2006-04-07 - 14:48
Please do yourself and your son a huge favor and get a 2nd opinion - you won't regret it and you'll have peace of mind. Neurologists are good doctors at what they do but it is your right to hear it from someone else that he may need to be on this medication especially with him being that young. I'm not that familiar with the drug to be honest with you. I've heard of children being placed on Keppra or Lamictal a lot of times however. Here is a few questions that you can ask the doctor next time you see him; what does the drug exactly do for his condition, what are the side affects, what should I watch for while he's taking it, does he have to eat something when he takes it, how often will he be taking it, will it affect his daily activities, make him lethargic (sleepy), drunkish like feeling, dizzy, etc. Any question you think sounds silly to ask, isn't because it's your son's health at risk and your money is paying for the medication, not the doctor's. Good luck to you both and keep me posted if you like. Sue Do the impossible today. For yesterday is gone and the opportunity of tomorrow may not be what you expect.

Re: My son is new to epilepsy and I'M VERY NERVOUS

Submitted by jolieweng on Sun, 2006-04-09 - 11:23
My little guy is almost two and we've been dealing with several types of seizures, but mainly partial or absence seizures. When the docs first prescribed Zak meds, I was very hesitant! I thought, they are only "little" seizures, and if they are not causing him to fall and get hurt, then why should I treat him with meds and all their side effects. I resisted the docs for a while and felt guilty giving the meds until I asked the questions about why. He explained to me (and I've since seen why) that "little" seizures can trigger "bigger" seizures. They can also cluster together and that can be very dangerous. I thought that my little guy wasn't that bad compared to other stories, but he has had several instances even on the meds that his partials have clustered and turned into secondary generialized grand mals. He ends up taking a trip to the ER in an ambulance and being admitted to the hospital. I agree that you should seek another opinion, or at least seek another drug that is more familiar. I have not heard of this drug and am in the same agreeance as suebear in that there are other drugs more commonly used-Depakote for instance is what Zak takes now. It is used to control absence seizures. Keppra can cause some severe mood and behavior issues-bad enough to take the child off, so be forwarned about that one! Good luck and I wish you and your son the best!

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