concerned

[Jadesmama]

Hi everyone. I'm new at all this forum stuff so plz excuse me if it turns more into rambling. My daughter had her first gran-mal or tonic clonic whatever they want to call them now, seizure at the age of 8. We had complications with medications and drs. for 2 yrs. then she was taken off meds and released from drs. care. NO SEIZURES....until March 2010 which was 3 days from being exactly 7 yrs from the date of first seizure. She was placed on meds again and again all kinds of complications from the meds. Released from meds and dr care in November 2010. Had another seizure January 2011. Does anyone have a clue what may be going on because the drs. don't seem to know what they are doing. I have come to the realization that this is going to be a part of her life. But I what I don't understand is why they can't tell me...something, anything! Why did she have the first one, why did she go 7 yrs with out any then have 2 in less than a year. Her last EEG was done in hospital for a 4 day 3 night study and they said it showed no epileptic activity. I don't understand what is going on. The type of seizures that she has are so horrible. The first 2 lasted almost 10 minutes then she had memory loss that lasted months after. The last seizure it took 45 mins before she had any motor function in her speech, hands and legs. They have her back on Keppra and that medication is just messed up. She is a highly intelligent girl. She is in the 10th grade and takes 11th/12th grade honors classes which used to be very simple to her but now she is struggling to remember basic work. She is very moody, sometimes she even gets childlike. I feel like i am talking to a 7 yr old at times. And this coming from a child whos friends have always told her that she was to serious. I don't know if that is the meds or if something else is wrong. Poor thing can't keep a boyfriend (not that I mind),lol but because she is so extremely moody it is like living with jekyll and hyde and someone that doesn't have to put up with it isn't going to and then the little boys break up with her and like all cruel children are they start running their mouths about how she is crazy. That is very damaging to a 15 yr old girl. She is having a hard time coping with all of this and I just don't know what to do. Well, thanks for listening. Sorry so long.

 

[Rae1889]

First off welcome.

Second, you will find lots of information on here.

Third, you should think about letting your daughter make an account and ask questions.

It is odd that the seizures are spaced so far apart, but from what it looks like to me is that it seems to be hormonal. As 8 years old is when the bodies hormones start to change, and then again around 14-15. Have you noticed any similarity between the seizures? Example: did they happen while she was sleeping? not enough sleep? low blood sugar? havent eaten? exercise? period? etc etc.

I would suggest she start a seizure diary. mark down everything you eat, drink, sleep when how much etc. as detailed as she can. It seems tedious but can help when she has her next seizure. Did the doctors do an MRI or CT scan? what about gluten tests or allergy tests?

 

[Endless]

Jadesmomma,

Welcome to the forum! You are a great mom for coming here and doing research. We'll help you and your daughter any way we can.

Ditto what Rae said. I agree.

I'm going to add that since your daughter has a case that's tougher to figure out, maybe she should see an epi (seizure specialist). The garden variety general neurologists are sometimes not completely knowlegeable when it comes to seizures. An epi can help get this all sorted out much more quickly.

One of the easiest ways to find an epi is to either ask your daughter's existing neuro for a referral to one. Are you in the U.S.? If so you could also find an epi at a regional epilepsy center first, then ask the neuro for a referral. Search here for a regional epilepsy center near you: http://www.naec-epilepsy.org/find.htm

Here's a thread in the forum that gives links to different pre-made formats for seizure journals. It makes keeping one easier. http://www.coping-with-epilepsy.com/forums/f23/seizure-journals-10776/

Will you let us know what you find out, and how she's doing?

 

[Nakamova]

Hi Jadesmomma --

Ask your daughter's doc about having her take a B Complex vitamin with B6 and B12 -- many have found that it helps with the moodiness ("Kepprage")that is a side effect of the Keppra.

Best,
Nakamova