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  #21  
Old 04-25-2008, 04:58 PM
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Hi CJR!! I too am the mother of a child with epilepsy. His started as an infant, but I too was unaware that he was actually seizing simply because the only seizures I was ever aware of were the grand mal that you see on TV. I had no clue that a little spaced out, lip smacking, right hand shaking, and confusion were actually a form of seizure. When he was 5, he was finally diagnosed and he experienced his last seizure on August 29th, 2002. We thought we were finished with this, and that we could look behind us and go "YES" we lived through it but do not have to face it again. Well, in January, my kids were staying the night with my mom and she called me the next morning saying that my son had done something "weird". I told her that I was sure he was fine but I would keep an eye on him. Well, about a month later, he had another one, this one my husband experienced. Then I went ahead and made him an appointment with the doctor to see what he had to say. He ordered an EEG and it came back normal. At that time, we opted to not put him on meds until 3 days later when he had a 15 minute grand mal. After calling the hysterically calling the doctor and my husband cussing out the 911 operator because they were taking too long, we opted to go ahead and put him on meds. Well, since then, he has had one every night, sometimes two a night, and they seem to be getting a little worse each time. He isn't having grand mals, let me clarify that, he is having partial seizures again.

CJR, I am with you on this one. It is the hardest, most helpless feeling in the world, watching your child go through this. It does get easier with time, well at least that is what you tell people. I don't think it ever gets easier, to be honest, watching your child seiz. My prayers are with you, as that is the only thing that has kept me going thus far. Take care!

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Old 04-25-2008, 05:47 PM
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Hi CJR,

I was first diagnosed with Epilepsy at age 12.... when my hormones started kicking in. Now at age 37, I've been fighting sets for 3 years now. My advice to you and your daughter. For a couple of months, (summer is perfect), get a journal and write down EVERYTHING. When she wakes, when she goes potty, the moods, what she eats, etc. I'd be willing to bet her body is preparing for menstration, and thus the cause of the seizures.

What I find helpful: Get up in the AM and do YOGA (or some stretching and relaxation) for 15 mins.... (I use the 15 minute workout from McDonalds several years ago) Then, make sure the vitamins and minerals required by the body are there. (blood tests, or guesswork). I was once told by a very wise woman (Thanks Donna) that the seizures are my brain's way of telling my body too much water pressure has built up on the brain. So if I feel my feet swell, or headaches, etc. I take the PMS drug (Dilantin) offered over the counter. I also put "Breathe Right" strips on my nose at night to allow more oxygen in. I have learned (from my YOGA book) that I can train my brain to never have seizures again. I tell myself every night before bed, while in a very relaxed state, "I will be seizure free forever". I also do neurofeedback. I don't know what is working, but I am happy and healthy, and last week marks 3 months with no seizures. This is a milestone since I've been in the hospital 8 times in the past 3 years from sets of 6 seizures or more. This all started again due to hormones and I was able to track it. Good luck and keep us posted.
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  #23  
Old 04-25-2008, 10:12 PM
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Paradise Survivor~Aloha to you as well! As I mentioned in another thread we own three dogs. Hubby and I have noticed that they become extremely whiny prior to her having a major seizure. Afterwards they "lay" on her for days or until we put a stop to it. I've always loved dogs before but now I've become a truly dedicated DOG Person.

Hadley~When our family physician told me that she'd been having seizures for a very long time I was shocked because like you I was unaware that seizures came in many shapes and sizes! Then he continued by saying that he was sorry to give me more bad news but... (Don't you hate that "but...") that she was the worst age and gender for Epilepsy treatment. He warned me that as girls go through their hormonal changes that their seizures get worse and more frequent. He also warned me that IF we find a med that controls her seizures that her hormones could change again causing the med to stop working or to need adjusting. This was very overwhelming to hear. But the Doc knows me very well and he knew that I would want the cold hard truth, no matter what. That is something I feel that many Doctors don't give you. I tell you all this because many people seem to think that hormones only effect girls. WRONG! As a Mom a puberty aged boy you know that his hormones are all over the place right now. Having an increase in seizures at night might be related. My advice...Ask your doc. Just in case the Doc hadn't thought of it.


Stacy~I appreciate the advice. I am holding off on making any changes to her diet or her exercise regime (for now) until we finally get in to see the Ped. neurologist. on May 14th. I would like to get as much info as possible before then though. I want to seem informed and intelligent (even if I sometimes doubt it myself ~ LOL). So keep sending the advice. Believe me, I'm listening...

Although, I wouldn't say that dealing with E. is something I ever thought I'd be doing I'm glad that I'm not doing it alone. I have found that Epilepsy has given me a chance to get to know the most amazing people (including my daughter) and for that I am so very grateful. Thank you everyone!
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Old 04-26-2008, 10:47 AM
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Originally Posted by CJR View Post:
Although, I wouldn't say that dealing with E. is something I ever thought I'd be doing I'm glad that I'm not doing it alone. I have found that Epilepsy has given me a chance to get to know the most amazing people (including my daughter) and for that I am so very grateful. Thank you everyone!


This site has been a great place for support, plus a chance to chat with people from all over the world.

Getting to know your daughter is such a positive way of looking at this challenge. That is really, really cool!!!

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