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[vmagill]

hi everybody,

our 1 yrold baby girl just got on Keppra 6 weeks ago - she had had 4 seizures during 5 month period (since she was 7 1/2 mo old) - the first 3 seizures were focal - each effected different side of the body - the 4th one was a stataus seizure that lasted 1.5 hrs - she was watching her big sisters playing Wii that day -

she also had 2 febrile seizures a week ago when she got sick - we noticed some unusual look in her eyes since she started Keppra - we're thinking it must be side effect from Keppra or damage to her eye mussels from having a long status seizure -

we're so stressed about leaving her out of our sight and worried about her future - how can she go to school in the future? -

for now she had 2 nornal EEG and 1 normal MRI - no family history of having epilepsy -

[speber]

I'm so sorry your family is having to go through this! You must be scared out of your mind.

Take heart, there are MANY parents here...MANY resources...lots of good information!

You guys are not alone unfortunately...epilepsy is WAY more common than most people think. Some get it early on...some get it late in life.

Check out Epilepsy 101 - Part FAQ, Part tips and advice and
the Inspiration thread if you need some help getting 'up'!

Peace

[Bernard]

Hi vmagill, welcome to the forum.

It's really stressful dealing with the anxiety of uncontrolled seizures. There will likely become a point where you just accept that you will do the best you can when the time comes and not worry about it until then.

On the bright side, a child's mind is still developing as they grow. There is a possibility she will "outgrow" the seizures.

Just curious, was/is she eating a soy or dairy based formula?

[brain]

Vmagill!

Welcome to CWE! Glad to have you
here, and so sorry your little one is
having to experience seizures!



But it's true that they can outgrow
them, and let's pray that yours will
too! Feel free to browse around and
especially visit those links below!
Make yourself a home here!

[skillefer]

Hi vmagill! I agree with speber, check out the epilepsy 101 posting. Also, feel free to ask any questions. People can outgrow seizures. I used to have grand mal and petite mal seizures. I outgrew the petite mals. So it is possible. And Bernard is right. Don't worry about the things you cannot control. You do what you can, and move on. That's true of schooling too. Epilepsy isn't talked about a whole lot, but it's actually more common than people think. So it really shouldn't effect your child's ability to go to school a whole lot. Several of us here at the forum have advanced degrees, so it is possible.

[stilldancing_98]

Welcome Vagmill. I am so sorry that you all are going through this. I have had epilepsy since I was ten and my son since he was 6 mo. It's hard I know. But don't worry about things that don't need to be worried about yet like school. Or even in my opinion growing out of them. Just deal with the hear and now. Soon you will be an expert. Have any books been recomended to you yet? I definatly will be thinking about you. Lots of hugs for everyone.

[stilldancing_98]

sorry about the mistake. lol its vmagill. Teresa

[RobinN]

Welcome vmagill -
My daughter is also having seizures. Though she never had them as a young child.
I would also ask you if she is drinking formula. Has she been tested for any vitamin deficiencies? Have you had her tested for any food allergies? (OAT test?). Can you connect any fevers to a vaccination? Or any odd changes after a vaccination? Any strange illnesses? How is the health of her intestines?

There are so many different causes that you have to consider. Along with the traditional testing that is done. Liver health, oxygen levels, blood sugar levels, MRI testing and also MRA testing.

A few I was told about, many others (some we have yet to try) I found out mostly from this website. So have a seat and take a look around. There is a ton of info to browse.

[thelton115]

Hello everyone!

[BensalemAngler]

Welcome and I am so sorry you had to find us.

My only advise is do not worry about the febrile seizures. Do what you can to avoid them with tylenol and motrin but just know they are coming when ever she gets sick. Most likly she will be dealing with that until she is 5 or 6. BUT febrile seizures do no damage to a child it is the body's way of stopping the fever. Believe me I know this b/c my almost 4 year old has had then since he turned 1.

The possiblility of out growing them is true, I do not hold my breathe b/c I do not want to be let down. Just understand I went for a long time not sleeping being pissed off just being mad. None of this helped.

You WILL find a way, just relax and breathe, this too will pass...

[vmagill]

thank you guys soooo much for welcoming us - this place is sure a very warm place - our baby is on Keppra - she's now on 40 mL/day(mid range, recomended dose is 60mL/day) - still we notice some jerking movement of eyes and neck - could that be some type of seizure called absent seizure, anybody has info or experience on this one please comment - anyway if it deosn't go away in 2 weeks we' re going schedule a vedio EEG test for her to see if it's in fact a seizure activity -

vmagill

[vmagill]

hi robinn, she is a healthy child except i recall some of tremor activities started when she was ~3 mo old until her 1st seizure when she was 7 1/2 mo old-

vmagill

[vmagill]

hi stilldancing 98, no i have not gotten myself a book yet - i spent a lot of time on internet fishing out info - i know it's time to get myself one - please recomend - thanks - vmagill

[vmagill]

hi bernard, she is on milk based formula - she was breat fed until 7 mo old -thanks - vmagill

[Bernard]

... i recall some of tremor activities started when she was ~3 mo old until her 1st sz when she was 7 1/2 mo old-

... she is on milk based formula - she was breat fed until 7 mo old ...

Is it possible that the dairy base is contributing to the seizure activity? I'm guessing DogtorJ (advocate of a GFCF diet) would think so.

When my wife had absence seizures, there was no jerking or eye movements involved. Her eyes just had an unfocused, distant look until the moment passed. It's more likely IMO that the behavior you are describing is a complex partial seizure.

[stilldancing_98]

I am trying to think of it. You guys help me . Its called Epilepsy in Children 3rd edition. It has medications. It lists what the seizures look like. Resources. Even though I have epilepsy. My son had other factors in his and it really helped on meds and educating myself. Go to any bookstore and they will be able to find it or order it for you. Also I can't remember the author right now. But they will know.Get the book. I am on Keppra.