I have no idea where to even start. Sigh.

[KimHen5]

My beautiful daughter Ellie, who turns 11 next week, had a seizure on June 5th around 4:30 am. First one we've ever noticed. It lasted about 4 minutes or so & was what I would classify as gran mal based on what I've read so far. The ER doc started her on 5ml Keppra 2x daily. We were told Keppra was the best choice for young females due to reproductive issues with other choices.

June 28th at right around 4:30 am she had another one, also lasting around 4 min that we know of. At this point we were told she has epilepsy & they upped her Keppra to 7 ml 2x daily.

I'm driving myself insane trying to read up on everything to do with epilepsy & I honestly believe I'm on the brink of panic attack! I've started sleeping on her bedroom floor, scared to death that she's going to have another and no one will know! She has had an MRI & we are waiting to see the neurologist next week for results but I'm hoping you all could take a minute or two & give me a bit of advice. I feel so helpless not knowing what's going on.

Some background -- no known family history, and looking back my husband & I suspect she's had absence seizures for years but we just never knew what the heck it was or that it could possibly be a problem. And that makes me feel horrible! I'm supposed to know these things right?!

She is growing very quickly, way faster growth spurt than her older sister experienced. I'm also wondering if since both known seizures were at the same time of morning, does that mean anything good or bad for her prognosis? And can anyone give me some basic questions I should be asking her neurologist next week?

Thank you so much in advance for any insight or advice you can offer. You seem like an amazing group and I'm really excited I stumbled upon your site!

 

[thornton8000]

welcome Kimhen5!
from the female stand point I cannot say!
as I'm a male lol
keppra for me has been great, and I have seizures not E, and possibe absence seizures as well just never dx'x as a child but will never know as well due to so many issues.

my own personal thoughts?
document everything, get a journal and doucment it all start and stop times, foods, drinks, triggers, any kinds of auras she may have before, things she feels after them, and bring them to the neuro, so they can have a paper trail of everything.
CWE is an awesome place and the people here have helped me alot! helped me understnad I'm not alone and that i'm ok. I'm not weird and it's ok to to feel and have emotions.

mike

 

[MonkeyBoy]

KimHen5 - So sorry to hear. Not to waste time I would highly suggest you read everything RobinN has written on this forum... you and her have a lot in common - just she is a long way down the road and her daughter is doing very well. Robin has done an incredible work in journaling her journey and care for her daughter. As hard as it is to not over-react. DO NOT! Take a breathe and learn from trusted and reliable sources. Best wishes.....

 

[Nakamova]

Hi KimHen5, welcome --

First off, a big hug to you for what you and your family are going through. Epilepsy can be a pretty scary idea at first, when there are so many unknowns to take in. You are doing the right thing by seeking out more information. It can really help, and if you are armed with the right questions you can get a lot more out of your daughter's medical team. Please don't blame yourself for not being aware of her possible absence seizures -- they are not easy to notice or identify, especially without knowing what to look for.

The timing of your daughter's seizures may not be particularly relevant, though it is always good to look for patterns and possible triggers. Many people have seizures as they are transitioning in and out of different phases of sleep. You might ask about whether a sleep study would be useful -- sometimes apnea or other issues can play a triggering role.

Her growth spurt could be making her more vulnerable in the sense that the changing metabolisms and sleep schedules associated can lower the seizure threshold of someone who is already at risk for seizures. You might ask her docs about whether hormonal imbalances -- thyroid, pituitary, estrogen, etc. -- are playing a role, as well as how that might affect her medication levels.

All the anti-seizure medications are fairly powerful and can have a wide variety of side effects. Keppra in particular is known to cause moodiness and anger ("Kepprage"), so keep your eye out for that and anything else that may seem unusual or problematic. If the Keppra doesn't work, there are many other meds out there to try.

here are some general questions to ask the neurologist:
-- What to look for with the Keppra -- side effects, doses, blood levels
-- Assuming the Keppra works, when would it be worth considering a med taper
-- If the Keppra doesn't work, what other meds might be recommended
-- Does a previous history of absence seizures affect her prognosis?
-- What lifestyle precautions should she take? What should you as parents be aware of?
-- How often should she see the neurologist?
And very important:
-- How to get in touch with any additional questions or concerns?

Definitely feel free to ask questions here as well -- CWE members have a wealth of information, anecdotal advice, and support to offer.

Best,
Nakamova

 

[Nakamova]

Here is the thread by RobinN that MonkeyBoy references:
http://www.coping-with-epilepsy.com/forums/f32/neurofeedback-rebeccas-story-2733/

 

[Cint]

Some background -- no known family history, and looking back my husband & I suspect she's had absence seizures for years but we just never knew what the heck it was or that it could possibly be a problem. And that makes me feel horrible! I'm supposed to know these things right?!

She is growing very quickly, way faster growth spurt than her older sister experienced. I'm also wondering if since both known seizures were at the same time of morning, does that mean anything good or bad for her prognosis?

First of all, please don't put yourself on a guilt trip. You're not supposed to know these things just because you're a parent. Sometimes seizures just start happening for no known reason. I'm the only one in my family with seizures, too. And menstrual hormones could play a role in seizures. Keppra also can effect moods, so beware of Kepprage. Here is a site with info about "what will the dr. do?": http://www.epilepsy.com/101/diag101_procedure

 

[HotMess]

Hi KimHen5,


This is my first post on this website, but your story resonates deeply with me. I was diagnosed with Epilepsy around the same age as your daughter and was prescribed Keppra by my neurologist. I took Keppra for 9 years, and it did wonders for me until my situation changed.

I was taking 50 mg 2x a day and had absolutely no side effects. I will tell you at her age, seizures may be more frequent because her body is changing. I have come to find that anytime your body is changing or your lifestyle, such as college, seizures are more apt to occur.

However, when you do find the right dosage, because I am a true believer in Keppra for a young girl, things will be better. What is so frustrating about Epilepsy is that it is a guessing game, but eventually you will find the answer.

As people have mentioned write EVERYTHING down. When they happened, how long, and how long your daughter was incoherent after. The more you right down, the better the neurologist appointments will go, because you AREN'T supposed to know these things unless you have previous experience. I had my first seizure when I was nine, I am now 22 and I continue to learn new things. You can never ask too many questions.

You have to tell yourself you are doing the best you can even if it doesn't feel like that. My mom did sleep with me every night after I had a seizure because that is what mom's do.

You won't sleep, you won't eat, and you will never stop worrying; but things will get better.

"All the world is full of suffering. It is also full of overcoming."

-Helen Keller

This quote helps me get through the hard days, and I hope it will for you as well.

 

[chop456]

Hi Kim,
My heart goes out to you. I was in your shoes about 6 months ago. My daughter was diagnosed with Epilepsy in February and I remember those initial days. You have come to the most wonderful group. CWE had been a life saver for me - it is filled with caring and knowledgeable people. Please keep us posted on how your daughter is doing and ask any and all questions you may have. There are so many helpful people on CWE. Hugs to you and your daughter,
Beth

 

[KimHen5]

Thank you all so much. What an amazing group. I appreciate all of your advice & encouragement!!

 

[Bathtub]

HotMess wrote:

You have to tell yourself you are doing the best you can even if it doesn't feel like that. My mom did sleep with me every night after I had a seizure because that is what mom's do.

You won't sleep, you won't eat, and you will never stop worrying; but things will get better.

Thank you so much for that! I'm a mom who is currently seething with frustration at the apparent reckless stupidity of my lovely daughter, who acts like she has to carry on partying for Britain even if it does provoke another seizure; and I needed that encouragement today. You so got the heart of it with "Because that is what moms do"

 

[Fedup]

KimHen5

I am sorry to hear about your situation and your young daughter, I cannot speek from the female point of view as I am male but this might help, I was 2 when I first had a seizure, you remind me of my mother, you are not to blame no one is - what did you or anyone do, nothing, did you know this was going to happen - no you did not, therefor it is not your fault and there is nothing you could do about it, but you are doing what my mother did and still does - she blames herself (she should have known and been able to do something) no matter how often I tell her its not her fault (only when we are alone) she is still being a mother, I remember being you daughters age no matter where I was in the house my mother knew it was like I was bugged and I hated it, I am over 40, married with a good job and most importantly a good family. If I may the one thing of you is not to put your daughter in a glass house and secondly as above write everything down and ask your daughter what she remembers and how she feels write this down as well.