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Fears

My name is Shawn, and my daughter Emily has been diagnosed with Frontal Lobal Epilepsy. The scary thing is they put her on medication and the seizures didn't get any better. She out of the blue had a grand mull seizure 12/4/03. She's only 2 1/2 years old. It's scary to know as her Dad who's supposed to protect her can't do a single thing about this. I'm also worried because the Doctor said this could lead to a real bad form of Epilepsy. Thanks for reading this and please feel free to respond. It helps to talk about it.

Comments

RE: Fears

hi, that's a tough diagnosis.... and as parents we want to protect our children and help them. it's so hard when we can't. here's a good place to start reading about epilepsy and the brain. there are links to many good sites on this site. http://members.nuvox.net/~on.jmorgan/this is a good place for parents to read: http://www.epilepsy.org.uk/info/parents.htmlhere is a good article about frontal lobe epilepsy:http://www.emedicine.com/NEURO/topic141.htm in case you missed it - the epilepsy.com link on frontal lobe epilepsy is very good...http://www.epilepsy.com/epilepsy/epilepsy_frontallobe.html

RE: Fears

Well, tibet2 already gave you the URL of the epilepsy.com page dedicated to frontal lobe epilepsy. Besides that page, I hope you'll explore other parts of the site and get generally well informed. If your daughter's seizures do not improve, she may need a different medication or another treatment altogether. Keep asking the doctor questions and if you don't get good answers or see progress within a reasonable time, get another opinion. The first diagnosis is not always correct.Many parents do feel hopeless, but new treatments are constantly being developed, so don't give up! You can also do a lot to help your daughter thrive during the times when she is not having seizures. It helps to focus on the positive things that she CAN do.

RE: Fears

the editor raised a good point... sometimes the first diagnosis is not correct and frontal lobe E seems to be something that can be hard to diagnose..... that's where reading, and then reading some more can really help. you feel more in control when you know more.if the more you read the more it sounds like your daughter, then the diagnosis is probably correct.if the more you read the more alien things sound, then i would look for a second opinion. i hope i didn't sound blunt last night - it was late and i am an information junky - so i gave you what i thought were the best links i had on E in general and frontal lobe E in particular..... i know people with frontal lobe E who have successful and productive lives. also meds can really work wonders. but finding the right med can be more art than science at times..... so be patient and keep reading and most importantly keep enjoying your little one.

RE: Fears

I would just like to respond to Shawn about his fear for his daughter. I can understand this fear my daughter at the age of 4 1/2 started to have seizures. Scarey I know but the worst for me is that I have epilepsy aswell and never knew that my daughter could get it aswell.My daughter is now 7 1/2 and yes it has been a tough road but she is very close to being two years seizure free from grand mal seizures and as for myself I am 11 years seisure free. take care and be strong it will work out. ck

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