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Feeling alone
Mon, 04/10/2006 - 19:39Topic: Parents & Caregivers
Hi! In January my daughter was diagnosed with having Epilepsy. I was wondering what the normal amount of seizures is. I mean she had four today. Is that a lot? I have no way to compare. Sounds crazy I know. She is taking Frisium to control her seizures. Anyone else taking this medication? She is at the maximum dose allowed for her size. Her neurologist says that she may need to go on another medication if this dose does not work. Her seizures seem to be getting more frequent now that she has been on the medication. She had an MRI done last Friday and has had two cat scans. The problem is, I have a 3 month old and a 6 year old to also take care of as well. She keeps having these fainting spells now and I cannot be there every single second that she falls. I am thinking about putting a helmet on her to protect her head because she falls straight back and bonks it! I am trying to be strong but I am all alone at night (my husband works the night shift) and this is usually when it happens. Anyone else going through my nightmare?
Comments
We had another EEG yesterday
Submitted by Karatanoron on Thu, 2006-04-13 - 07:31
We had another EEG yesterday because the day before she had one seizure and four fainting spells (that I knew of anyway). After they reveiwed the EEG, the nurse called me and told me that the doctor wanted to see me as soon as possible because Emma had a lot of sezures that I was not aware of. Most of the time she looks spaced out or grabs her clothes. I did not know this was a seizure. I am used to the eye fluttering and shaking seizures. They told me that they want to add another medication but are tied between two. One of them may make her fainting spells worse and if they treat her fainting spells, it may make her seizures worse. I have no idea what to do right now. I am just really upset at the amount of seizures she is actually having that I had no idea about. She is getting really aggitated in this Frisium too. I feel like I am slowly losing her. They are worried that if these seizures are not controlled soon that she may have some speech and learning disabilities.I'll see what the doctor has to say today. I hate this never ending battle with the meds!
Re: We had another EEG yesterday
Submitted by terrij on Thu, 2006-04-13 - 07:56
Karatanoron,
as achlid the drs. called my pet-mal my left arm would shake really bad and my left eye would twitch all at the same time.I took phenobarbitarl and dilantin like vitamins I believe for the first 16
years I was alive.And then taken off because I grew out of my child
hood seizures.Until I was 23 and driving my car and had my first
complex partial and almost killed myself driving.As the complex seizures started I would also pick at my clothes and sometimes take
my shirt off!I spoke to acase worker with our local Epilepsy Fond.
and asked her how common that was,she says its very common and the
theory of why people do that while in aseizure in because they get
very hot.I took tegratol one time and it made my seizures real bad.
After about 12years of nonstop seizures,all kinds of meds my neuro
finally said I needed surgery.
take care,
Terri
Re: Feeling alone
Submitted by kayakmom on Wed, 2006-04-12 - 09:20
yes, she is still having a lot. Sometimes finding hte right med is annoyingly difficult. If this one is causing more, it might be time to think about switching. A helmet for the time being might be wise to keep her safer. I would talk to your neuro and see what he feels about a different medication if you have given this one at least 6 weeks to see if it works... I am sorry things are so out of control. G