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Ugh please go away E

Wed, 12/14/2016 - 20:54
I haven't been here in years. 10 years ago, I spent a lot of time here when I found my 14 year old daughter having a seizure. I was beyond devastated and here I am again. We have a history in our family with generalized epilepsy. Our family heirloom is how I prefer to refer to it. My daughter spent 9 years pretty much seizure free, has a bad few months a last year but she is back to being controlled again My mother who has the same type obviously has spent most of her life with seizures. I have been fighting the battle for both of them for a long time now.. we have had a horrible stint with their neuro who changed my daughters meds to keppra in which she developed the keppra rage something fierce even as an adult it hit her hard. She was not my same child, she was an emotional wreck. when we discussed this with her neuro he pretty much refused to change her meds till she had an eval done by a shrink. Because well we don't know that it was the medicine and well he ended up telling the emergency room that my daughter has a history of suicide and a previous attempt. why so he could get her an eval done ASAP. Needless to say, we dropped him like a bad habit and I transferred my mom and my oldest daughter to a new one, we love this one. Monday I recieved a call at work that my youngest daughter (19 years old) had a seizure at work and hit her head very hard. I made them repeat it 3 times. I always suspected it with my oldest daughter I had her tested twice as a kid but we never were able to pinpoint epilepsy. My youngest daughter never even gave me a reason to think this would ever happen so I was totally floored to hear she had one at work. She went to the hospital and lucky for us her neuro don't go there, but we got the same idiot that we left. So much horrible things with this man. I was fine, he can order test but he wouldn't be treating her so I just let it go. She had a heart monitor hooked up, a cat scan, MRI, EEG, ultrasound of her heart and a few others. So Monday after the er trip she was admitted and she stayed until about 8 pm Tuesday night. All those test that they did, we never got one single result of any of it. We were questioning about leaving because they told her that after the EEG as long as all the results were fine we could leave. Tried to find out some results as well since they did not bother to tell her anything all day long. the nurse come in with a small bag and Said " I have to give you this and then I can discharge you" I said what is that? She said keppra. I came completely unglued.. I said so you are going to just toss meds in her without even telling us one single test result? We haven't even heard what they seen on the EEG and we know how important it is for that test to be done that is the tell all about epilepsy. I flipped out, explained that she already has been a cutter in the past, fought depression, I had her hospitalized 3 years ago because she literally had a mental breakdown and now you want to just put whatever med in her without even discussing this with her or me? We went to the hospital today and got the report for the EEG, abnormal record consistent with primary generalized epilepsy. Words that shatter my inner being, that we had to read on a piece of paper 20 hours after leaving the hospital. I am just lost right now. My mom and both my kids have epilepsy and I am over whelmed. I knew if anyone or any place would understand it would be here. We are waiting on the neuro to call us back so we can get her into his office for a visit and to start this fantastic journey yet again.

Comments

Hi there.. I too was on the

Submitted by kkirk16 on Wed, 2017-01-18 - 23:28
Hi there.. I too was on the forum many years ago when my 4 year old daughter was having seizures. I remember you. I'm back now too and since I've been away another of my children (my youngest son) was diagnosed with E. He also had a grand mal at work and hit his head and his face - poor kid looked like he's been in a bar fight. He's had seizures at work now twice actually and had ambulance rides to the ER. Your family heirloom comment made me smirk; I call our multi E situation the double whammy or the gift you wish would NOT keep on giving. My daughter (now almost 18) is still trying to keep hers under control after 4 different med changes and now an anti-anxiety med thrown in the mix. She went seizure free for 3 years but then we got complacent and tried to wean her off one of her meds and 3 weeks later... We thought they were gone and I was devastated when they came back. Neither of my kids have been on Keppra and based on what I've been reading I will avoid that one or at least be very watchful. We're considering another med change for my daughter because despite increases in both her daily meds she is still having breakthroughs about once or twice a month. Her anxiety is off the charts whenever she has seizures (a vicious circle cause I'm sure the anxiety contributes to the seizures and the seizures contribute to the anxiety) and she's convinced that she'll always have to live at home because she's afraid to be alone if she has a seizure. It breaks my heart. I'm so sorry to hear that your daughter's seizures came back and I wanted to let you know that there are others in your same (or very similar) situation. Blessings to you and your family and hopes for quiet seizure free days ahead.

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