Seeking advice

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clairekerzner

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Hi,

My name is Claire, and I'm mum to baby Sophie who is currently five months old. After a traumatic birth in which she became entangled in the umbilical cord and cut off her oxygen, Sophie spent a month in the NICU. The day after her birth she began to have seizures which were quickly controlled with medication. She's been on maintenance phenobarbitol ever since, but has just been weaned off it after a positive EEG result. We're now in a horrible waiting game to see what comes next.

I'll post my question down in The Nursery area, but basically I'm seeking a little advice from people who might have been where we are. They can't give us a long-term outcome for Sophie's problems just yet, but epilepsy and cerebral palsy are very possible (even likely). I've never encountered epilepsy before and I have no idea what I'm looking for when it comes to seizure activity. So, the possibility to ask for a little help is much appreciated.

Not sure how much help I'll be to anyone else before we have a firmer diagnosis of Sophie's problems, but I hope you don't mind me coming along.

Claire
 
Dear Claire,
There are no words that can express my sorrow about little Sohpie. I have no answers for you, but the best advise I can give you about different types of seizures is to look in the Library on this website. I have found very informative posts there and links to other websites that can help.
I will keep you both in my prayers.
 
I'm also sorry to hear about that situation. I was in a very similar situation. My epilepsy started when I was one year old and nearly suffocated. I shouldn't be alive, but I'm still here with several college degrees and a good job.

Technically, if Sophie hasn't had 2 seizures (or more), her diagnosis is not epilepsy. But, I would think the doctor would want to continue the therapeutic level of phenobarbital. A normal EEG can happen to somebody with epilepsy. That would be something I'd also question as well.

Personally, I was on phenobarbital throughout my childhood. Sometimes it worked, sometimes it didn't work. My schooling ram a gamut from compassion, discrimination, ignorance and over-protection. Epilepsy gave me the ability to stick up for my rights. It defined my true friends.
 
carrie, i get so tired of teling people this. why doctors don't tell patients this is beyond me. if your daughter was on maintance pheno and NOT seizing her eeg will NORMAL the only time an eeg is abnormal is when there is an event in progress! an eeg CAN NOT tell you have had a seizure minutes ago, once the strom is over there is NO sign of it having happened as far as the eeg is concerned it did NOT happen. the only condolense i can offer you is being diagnosed at this young age you daughter has better chances should she have brain injury the young brain can recover many times over what your or mine would. we are to put in simple terms; we are hard wired our brains are in large part what they are going to be a young child has not formed the synapsis we have. their brains are malable and can reasign and reshape how the brain works.
 
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