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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: Bad is about to go to worse. Feel helpless.
Submitted by land1968 on Mon, 2006-02-27 - 07:23
daughter's father, not daughter's ex. duh.
Re: Re: Bad is about to go to worse. Feel helpless.
Submitted by PJ on Mon, 2006-02-27 - 07:38
Hi Leslie,
I have a unique situation actually. I have an almost 10 yr. old daughter by birth whose father lives in town (we were not married). He's always been involved in my daughter's life. My 5 yr. old was adopted. I have a good friend who had to give her up, so I took her. She is accepted by my other daughter's father and calls him daddy. So yes, I have some help, but he is married and Bronwyn's hospital stay put a strain on his marriage since his wife cannot accept that he treats Bronwyn like a daughter. My parents are deceased. I am an older parent (51 yrs. old). I have siblings, but they have their own lives. And I have some good friends. I'm still in this basically alone. This is the third week I am missing work and this leave isn't covered because I am out of leave time. So I'm feeling pressure all over!
PJ
Re: Bad is about to go to worse. Feel helpless.
Submitted by land1968 on Mon, 2006-02-27 - 07:22
Hey, me again:-) I am certainly no expert, but from my understanding the fact that your daughter is conscious during the seizures indicates that it is partial/focal, meaning that the seizure activity is on one side of the brain. She could have any number of different symptoms, based on where the "focus" of the seizure is (ie, in a language processing area, motor area, etc). My son has had the stiffening/tonic stuff too, but since he doesn't lose consciousness, it's a "partial." Does that help anything? I know how awful it is, as a mother, to feel like you don't know enough or can't do anything. Is your daughter's ex in town? Do you have any help with the children? I was a single mother for 10 years and I can't imagine what it would have been like to face this alone. Leslie