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Don't know where to go next

Mon, 06/02/2014 - 22:14

My 21 yo daughter was diagnosed with epilepsy about 6 months ago after 5 months of not knowing what was going on.  She doesn't seize and the initial EEG came back negative.  We were pursuing the cardiac route when she had an episode, admitted to the hosiptal and another EEG was done the following day and it showed possible epileptic acitivity.   She started on Keppra, eventually had to add dilantin to control the seizures.  However, 6 weeks after starting dilantin, she spiked on it, switched to lamictal and developed an allergic reaction within 3 days.  They kept upping the Keppra during this time and currently is only on it.  It held her seizures at bay for about 6 weeks, when she had another seizure and ended up in the ER.  By this time, she was set to go into the monitoring unit at the hospital, so the docs didn't add a second med and given her reactions to second meds before, she was leery about it as well.  She just got released from the unit today after being hooked up to the VEEG for 7 days with no seizures recorded.  The only thing they could tell us is is that she had some abnormal waves when she would get drowsy before going to sleep, but other than that it looked "beautiful".  She was off of her meds for 4 days and they had her start back on them today at discharge.  She follows up with her neuro next week.  What's frustrating to us is that we have no answers.  It's been 6 weeks since her last seizure or seizure like activity and we know that each passing day that she doesn't have one is great, but not having any answers only more questions, is unnerving.  Part of the problem also is that we don't know where to go from here.  She was at a level 4 facility and one of the best hospitals in our area.  We know that some people take multiple visits to the unit to get a seizure capture, but she's trying to move forward and it's difficult to do with this hanging over her head.  Don't know if we should look into a second opinion or not, wait to see if she has anymore seizures and ends up back in the unit for more testing, or what....Seeking advice.  The docs at the unit aren't even sure that it's epilepsy but then also can't tell us why they are happening.  They were no help except that they put her back on her meds, which she's not happy about, nor are we.  IT's difficult to accept the need for the medication when there's a question as to the diagnosis.  Sorry for the rambling....just really frustrated.  Thanks for reading if you made it this far.

Comments

Welcome to the siteI read

Submitted by just_joe on Tue, 2014-06-03 - 22:39
Welcome to the siteI read your post and understand you ahve many questions.Your daughter was diagnosed with epilepsy At the hospital She had an EEG which was normal(no seizure activity. The next day she had another EEG which showed seizure activity. OK The 2 main tests done by any neurologists are EEG's and MRI's. I read she was in a unit and in that EEG she also had seizure activity.The EEG records the electrical activity in the brain when there is seizure activity they can see where in the brain the activity is coming from. She has had 3 EEG's 2 of which showed seizure activity. So with hwer having 2 EEG's and her having seizures she can be diagnosed with epilepsy.The MRI shows the brain and looking at it the neurologist can see if anything is wrong with it. If you had a fevor while carrying her then it could have made a difference in her brain groth. If she has been knocked out from a blow to the brain she might have had a hemmorage to the brain which can and does cause scared brain tissue. Those are things the neurologist will be looking for. The EEG's will tell him where the activity was coming from so those areas will be looked at closer.I know that because I know what caused my epilepsy, It cas caused by a blow to the head when I was 6-8 years old.....just really frustrated Relax and please try to understand that your questions will be answered. They may not be answered as fast as you would like but they will be answered. As for people with epilepsy, ANYBODY can get epilepsy at any age.You are on th site that can help you start with types of seizures. read and let her know to research since it is her that will have to deal with it unless she gets seizure free. Oh and I do know people can get seizure free. My cousin was diagnosed with epilepsy and was seizure free and then came off medications. She is married has a great family drives and works for herself in the medical field.I have epilepsy and have dealt and lives with it for 50+ years. I can have a seizure while talking to people on the phone and they would not know it. I have had seizures while eating with others and they knew nothing about the seizures. Keppra shortened the seizure time from 3-5 minutes to a few seconds. The time to focus (get back to noirnal) was reduced from 5-45 minutes. Now those same seizures are a few aeconds long and the focus time is 5-10 secondsI would sugest you tell her to get the My Epilepsy Diary and use it. There is a video which explains what to do and how it can help. she can give her neurologist permission to get into it and he can see the graphs and other things which can help him come up with medications, dosages and procedures that can help get her seizures under control.I hope this helps and your questions get answered. I also hope she gets seizure freeJoe

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