Mom - New and needing info

[eemcn529]

Hello all! My name is Erin. I joined this group because my 9 year old daughter was just dxs with having partion onset seizures. She has had 3 "episodes" since last July. I call them episodes because we are not convinced that what she is experiencing are really seizures. That is why I need all the help I can get!!!

She did have an abnormal EEG. Her seizures have all happened within 15 minutes of her getting up in the morning. Her last one, the Friday before Christmas, had her stumbling across the kitchen saying "I...think...I ....am....going..to..." then crash, poor girl fell right on her chin. Luckily, she just got a nasty bruise and didn't break anything. By the time I got across the room to her she was awake. She also complains of her stomach hurting right before.(I understand from the Dr. that could be an aura) So, the Dr recommended Keppra and we started yesterday.

To say the least I am worrying alot and I feel that my worry has a lot to do about not understanding and having enough info. So, here are some general questions I have and please, please share common stories and recommendations.

1) Could the seizure be caused by something else...lik low blood pressure?

2) Would it have been avoided if she had slept longer? (averages 10 hours of sleep)

3) If she had went back and layed down after feeling the aura would she have NOT had the seizure?

4) I am very nervous and was reluctant to put her on the medication...any advice?

I look forward to hearing from anyone who has time to talk to me about this.

Erin

[RobinN]

Hi Erin,
Welcome to CWE. I am a mother also. My daughter Rebecca is 16, and her seizures began 1.5 yrs ago. I will attempt to answer your questions to the best of my ability. I also feel that knowledge is my best defense against worry. So I have done an extensive amount of research over the past year.

1. My belief is that is can definitely be triggered by many different things. Low blood pressure, vitamin deficiency, intestinal issues, virus, hormones, and others that just are not popping into my head right at this time.

2. Sleep is a big trigger for many. Yet it wouldn't cause the underlying condition. As I understand it, we all, everyone of us, has a seizure threshold. Your daughter's threshold at this time, is lower for some reason.

3. Some people are able to stop the aura in it's track, but they have to have knowledge of the aura, and be in control of their mind at that time to be able to do so. Tricky set of circumstances. My daughter loses memory, and so she has no knowledge of aura. At times she has felt funny, but completely lacks the ability to do anything about it. I guess it has gone to far. There is a great book though that I just finished reading called:
http://www.amazon.com/Epilepsy-New-A...9736798&sr=8-1

4. I feel for you here. I was/ am reluctant as well. There are many that it helps. We have tried 4 different ones, and my daughter is able to tell me that the medicine was worse than the seizures (so far). This is certainly a personal choice. I would do as much research as you can. Coming here is a great step as there are a lot of alternative that are spoken about. Right now my daughter is not taking any medicine and we are trying nutritional changes, supplements of the vitamins and minerals to support brain health, and bio-identical hormones. We found that my daughter was not producing progesterone, and this is common in some women/girls that have seizures around their cycle. Rebecca had just started her period around the time of her first seizure. And the day of her first seizure she began her period. So you might consider this in your research, as 9 is not too young. Especially if she is getting hormones in the foods that she eats.

Hang in there.. continue to ask questions. It is a scary time I know. Learn to breath, and teach your daughter to do the same. There is research that cleansing breaths can turn a seizure upside down.

[skillefer]

Hi Erin!
Welcome to the group! You'll find that there are alot of really nice people here that are more than willing to answer your questions and help you out with your research. As for your current questions:
1. Can other things trigger seizures?
Yes. One of my triggers is low blood sugar. I just found out this year, and I've been a diagnosed epileptic for 32 years. Needless to say, this means I HAVE to eat breakfast every day. And I have to try to eat in a balanced way, whole grains, vegetables, proteins, and occasionally fruit. Other triggers for me are:sleep deprivation, stress, my period, ...oh, and strobe lights.

2. Could she have avoided it by sleeping longer?

Maybe. Another of my triggers is sleep deprivation. I'm more likely to seize if I don't get enough sleep.

3. If she went back and laid down after her aura, could she have avoided the seizure?
Maybe, but she's awfully young. Most of my friends who have seizures have never been able to actually stop the seizure. They just use the aura to let them know to get to a safe place and position to have the seizure.

4. Medication?
I understand your reluctance. Do the research. There are positives and negatives to meds. My seizures were controlled successfully for a long time using meds, and I have a drivers license and am able to drive. You also have to consider what the side effects might be, the frequency of the seizures, your daughters emotional health, etc. Personally, medication works really well for me. And it has for a really long time. Other people on the forum have had horrible times with meds and have had to switch meds multiple times or gone off meds. But that's a decision you have to make based on your daughter. Also, medication is fine, but you really should try to figure out what her triggers are. That way, you can work to avoid them. For me, I try to get enough sleep, watch my diet, take supplements, and cut down to one cup of coffee a day. I also have a tendency to exercise when I do start feeling stressed.

My best piece of advice would be to think about how you respond/react to the seizures. If you act/react scared or stressed, than guess what, your daughter is going to be able to tell, and she'll feel stressed/scared too. Take a deep breath and try to have a sense of humor. It will help. Trust me.

[Birdbomb]

Welcome Erin

Sounds like your daughter had a drop seizure. They happen suddenly, often without warning and recovery is usually very quick.

Have you read Epilepsy 101 yet? That will answer many questions and get the ball rolling for you.

[S-J Walsh]

Hi there. Welcome. I'm new here too. My dtr was on Keppra and did really well for awhile, but when they kept increasing her dose she went pyscho on us. Not everyone has this effect, but it's something to watch for in your dtr. If anything out of her ordinary pattern occurs ask you Dr to change the drug gradually. If it's period-related or hormonal, ask about clobazam. I worked really well for my dtr Arielle for a while. Just a thought. My prayers are with you. s-j

[alivenwell]

Been there, done that! She had a brief aura/warning and tried to let you know, but the seizure took over. With the abnormal eeg, it's highly likely she's got epilepsy. I know low sugar levels can also cause a normal person to pass out.

Keep track of that TOM (time of the month)! It's really, really critical for her E. And, try to help her maintain a good balance between eating healthy stuff, getting enough sleep and really taking care of herself. As a kid, I did not always take my pill at lunch time, and I did not always eat right at school. I ended up in the hospital pretty sick for several months. That illness took a hard toll on my E.

And, from a kid's perspective, I was frustrated to say the least. I was excluded from play equipment when I was at school. Liability is not a concept to most kids. I did a lot of running around the playground to vent out the frustration (nobody could catch me!).

The best you can do is be her confidant, friend, and mom. My parents disciplined me just like my 2 sisters. Try not to be over protective, but also be her proponent in school. Peer pressure, driving (or lack of it!), and scholastic work will all take their own toll with and without your intervention. Teach her to be self sufficient emotionally when mocked. She'll have to consider the source of the mockery and realize those people are not worth her time. That is SO hard. When she gets past that one, she'll realize her friends that she has left are her true friends.

My son went to karate and although he has no seizure, the discipline he obtained there is invaluable. Find something that your daughter loves like piano, reading, sports, etc. that she can excel at and succeed in - in spite of her adversity. Trust me, it's an uphill battle. I have several college degrees in spite of a guidance counselor telling me that I'd never make it through college prep. It's kind of funny how she turned out to be completely wrong!

[skillefer]

LOL...Alivenwell, you and I must have had the same guidance counselor! Mine told me I'd end up cleaning hotel rooms for a living. Success is the best revenge.

[eemcn529]

Thank you all for your good advice. I can tell already that this was a good decision to join. I plan on taking a look at the documents that you all suggested today.

Thanks again! I already feel better.

Erin

[p22denise]

Welcome Erin. My daughter Janae has epilepsy. She is 5 years old. All of her seizures (so far) have happened about 5min to 1 hour after she wakes up. Either in the morning or right after a nap in the afternoon. She used to get the aura and come to whoever was watching her but now she kind of drops her head and it happens without warning. She is on Trileptal and has been for about a month. I also worry daily about side effects and she is also seeing a nutritionist for the side effects of the drug. I believe in the diet change and nutrients and rest are a biggie. THis is a wonderful place for support and questions to be answered. I am still learning a lot about epilepsy. Welcome again.

[Bernard]

Hi Erin, welcome to the forum.

There are tons of possible causes for seizure activity. It could be related to blood pressure, diet, sleep, brain trauma or any number of issues.

Does she feel tired when she wakes up after 10 hours of sleep? If so, I might think about getting a sleep study to make sure she is actually sleeping through the night (and not suffering from sleep apnea).