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Bad is about to go to worse. Feel helpless.
Sun, 02/26/2006 - 19:51Topic: New to Epilepsy.com
Hello. I posted earlier today about my 5 yr. old daughter Bronwyn.
She's having 10 or more seizures a day that last 30-45 seconds each. Once they start in the morning they go on all day long, almost an hour apart, until bedtime. I don't observe her after she goes to bed. They are diagnised as partial focal, but look tonic to me since she always falls down and is nearly paralyzed.
Bronwyn was prescribed Topamax sprinkles, 30 mgs. in the morning and 30 mgs. at night. Today, she refused her medicine. Nothing I tried seemed to work. I told her that the seizures might get worse (like over 10 a day isn't bad enough!) but Bronwyn looked at me and said "Mom, I'll handle it".
I'm afraid for tomorrow. I haven't been to work in two weeks because I can't leave her or send her to school like this.
Just wanted to vent. Thanks.
Comments
Re: Re: Re: Bad is about to go to worse. Feel helpless.
Submitted by land1968 on Mon, 2006-02-27 - 09:03
I am glad you are not completely alone, then. I wonder if a social worker at the hospital could put you in touch with some kind of nursing/in-home care while you are getting this situation under control? It would be worth looking into.
As far as the meds go, I'm going to second the other poster that you can't let her get the best of you on this one. My son is very much like your daughter, temperament wise. All the way down to this: it turns out he has been having his "mild" seizures for years, intermittently, but I always chalked it up to him being drama-boy and thought he was making it up. Now I feel pretty bad about that, but it would have been possible.
I would use whatever it is you can to get her to take the meds. My son, who is addicted to the computer, loses his mouse when he doesn't comply with us. He is willing to take his medicine, but he is much older than your daughter. Our battle right now is to get him to do his homework. Make-up work, actually, because he has missed so much school the last three weeks. He is a highly motivated, straight-A student, but the fogginess of the medicine is making him very hard to work with.
Our school district offers homebound instruction if they are to miss more than two weeks. That doesn't help you with the supervision aspect, if she has to miss a lot it might help with that end.
By the way, things are looking better here, suddenly. His seizures have decreased, and the side-effects are diminishing. Hope you get in a better space SOON!
Leslie
Re: Re: Re: Bad is about to go to worse. Feel helpless.
Submitted by land1968 on Mon, 2006-02-27 - 09:03
I am glad you are not completely alone, then. I wonder if a social worker at the hospital could put you in touch with some kind of nursing/in-home care while you are getting this situation under control? It would be worth looking into.
As far as the meds go, I'm going to second the other poster that you can't let her get the best of you on this one. My son is very much like your daughter, temperament wise. All the way down to this: it turns out he has been having his "mild" seizures for years, intermittently, but I always chalked it up to him being drama-boy and thought he was making it up. Now I feel pretty bad about that, but it would have been possible.
I would use whatever it is you can to get her to take the meds. My son, who is addicted to the computer, loses his mouse when he doesn't comply with us. He is willing to take his medicine, but he is much older than your daughter. Our battle right now is to get him to do his homework. Make-up work, actually, because he has missed so much school the last three weeks. He is a highly motivated, straight-A student, but the fogginess of the medicine is making him very hard to work with.
Our school district offers homebound instruction if they are to miss more than two weeks. That doesn't help you with the supervision aspect, if she has to miss a lot it might help with that end.
By the way, things are looking better here, suddenly. His seizures have decreased, and the side-effects are diminishing. Hope you get in a better space SOON!
Leslie
Re: Re: Re: Bad is about to go to worse. Feel helpless.
Submitted by My3Dogs on Mon, 2006-02-27 - 07:58
I am sure this is going to sound harsh and probably not going to win me many friends but here goes...... When my daughter was 3yrs old she had eye problems/surgery and part of that was she prescribed to wear a patch on her 'good' eye for most of the day. I tried patching my eye own eye. Not fun. She didn't like it much either. We tried everything the books suggested. Finally it boiled down to this.....if she didn't wear the patch then she didn't leave her bed. Period. This wasn't something that was negotiatable...this was her health. There were a lot of tears. A LOT OF TEARS. Hers and mine. Hers I saw. Mine she did not. Now she is a teen. Her eyes are straight. I am telling you what worked for our family. You will choose what is best for yours. No one can tell you that. Only you can. Best of luck to you as you work that out. -Wendy. Please forgive the grammatical errors. I've been increasing the trileptal again and had another seizure this weekend.