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Old 07-09-2015, 11:01 AM
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overwhelmed by E


Hi everyone,

I was on here fairly recently writing about my story of E in my family and it has been a rather tumultuous one.

My most recent stuff has been a mixed bag of seizures T/C absence,drop and grand mal. The grand mal are new as of about 3 months ago and all of last week we were in the childrens hospital with mr 8 having a video EEG. He had a 9 minute grand mal which req midazolam and it has scared the pants off me, it feels like it is ingrained in my mind.As extra pressure he is nearly non verbal and autistic/ADHD also and intellectually a 2-3 year old so I am feeling overwhelmed and really just lousy that I have to watch him struggle.As a parent I feel like I am lacking in my job although I have invested all my energy into getting him a better quality of life. he has been through about 12 meds and surgery is the next possibility and other than that it is the VNS and trial meds which from what I understand are not seizure specific.

I thank you for the opportunity to write this as it has been weighing on my mind and I felt like if anyone would understand it is you guys . I am sorry for the novel 😉
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Old 07-09-2015, 08:03 PM
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Don't feel like you aren't being a good parent! Your being there for him and helping him as much as you can, that's all he needs!

I had my very first seizure when I was 27, in 2003. I had to be put into a coma to get my brain to 'calm down' because they couldn't get me to stop having seizures, it was just one right after another. It took a few weeks before they were able to find the right meds that helped stop the seizures enough to bring me out of the coma.

I don't know how many different meds that I'd tried through the years but I was still having around 20 seizures a month. They were mostly complex partial but I did have a grand mal every so often.

I was unable to have brain surgery so my neurologist suggested a VNS. I got one and it reduced my seizures to about 7 a month. They aren't nearly as bad and don't last as long. I'm also taking meds along with it too. It took a few months to figure out which meds would work best along with the VNS.

If I feel the seizure coming on and I use the magnet in time it will almost always stop the seizure from happening. Some times my seizures just come with out any warning and I can't use the magnet in time. When someone else uses the magnet on me while I'm having a seizure it will bring me out of the seizure fairly quickly.

For some people it works even better than this for them, they still may have to take meds along with it though. For some people it works about the same as it does for me. For others it doesn't work at all or they just don't like it.

If you don't want to have brain surgery then it might be something to discuss with your neurologist about getting.
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Old 07-09-2015, 08:25 PM
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Hello,
I understand you not wanting brain surgery I had it, and it didn't stop my seizures, the VNS isn't a guarantee either I got it in 2001 and it didn't do much for my seizures.
You never know what may work I've had epilepsy over 50 years.It comes down to meds working better for me than surgeries did.I've taken around 23-24 different anti-epileptic drugs.
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Old 07-11-2015, 01:24 AM
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Hey Stacey, I am hearing you...
Hang in there, we've all got challenges that happen in various ways.
It's like a never ending grieving process I suppose.



Don't be too hard on yourself, we are all guilty of that..
what's happened has happened, it's about moving on forward, and somehow, it does eventually get there.
Make sure you have a good support network of who you trust in place, that really helps

Conquer the crap and just do the best you can, never be afraid to ask questions and or ask for help.
Advocate for what you believe in and love those that are vulnerable in your life, because you are needed...whether you like it or not...
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Old 07-11-2015, 10:57 PM
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Stacey, You DID NOT write a novel, but if you had written more I, for one, would have been interested, very interested.What you are writing about is important for all of us since loving another human being means risking being helpless in the face of whatever perils life brings them. If it was important for you to write it, it is surely important for us to grasp what you are living and loving through. I so much wish on you fortitude that protects you from this sense of failure you spoke of -- It is not true. You are not failing. Do whatever you can to protect yourself from it. You must be tired and heart sick but your love is not failing. It isn't. Take care of yourself.
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Old 07-12-2015, 02:12 PM
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Stacey, I agree with Bidwell - that was no novel. And if you want to, let it all out here! Your frustrations, your questions, your concerns. This is the place for them all!

I have found there are lots of wonderful peoples here who are compassionate, and who may have been through something similar to what you are going through so they could have some helpful comments!

Making decisions for children, I find, is very hard because my mother heart/brain constantly questions whether I'm doing the right thing or not. So hang in there, and go easy on yourself, okay?

If you want to get angry, I've found that the Padded Room is a great place to rant and vent and just get it all out!

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Granddaughter is 14 months old! She walks, she runs, she climbs. Found at the top of a ladder once already - keeping her mama and papa busy
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