Very Frusterated with EEGs.......

By Ariskakes Latest Activity August 7, 2011 at 3:35 pm Views 970 Replies 4 Likes 1

Ariskakes

My daughter is going in for a three day stay for a VEEG and they are hoping to catch a seizure or some abnormal activity. I wish they would just take her off the meds for those three days to try and catch something. Every single EEG she has had as been normal. She was dianosed because of her MRI but they want to have something on the EEG. Sleep depervation isn't going to bring anything on. She can't sleep at home as it is. Flashing lights make her freak out because she is super sensitive to lights but it doesn't show anything abnormal on the EEGs. The only way you can be likely to catch a seizure with a warning that it's coming is when she spikes a temp. Every time else is just whenever without much of a warning. She took a random grandmal seizure last week and they changed her medication to Trileptal. I'm so frusterated because the doctor wont stop the meds. I know i'm no doctor but I am her mother that is with her every day and I know when things work and don't. I just really want them to catch something instead of us wasting our time in the Hospital for three days. I have two other young children at home, one being a 7 month old baby. If we are going to do this lets go all out so we don't have to keep coming back. I know that must sound terrible but sitting at home dealing with what is going on with her on a daily basis is driving me insane i think. I am just at the point where the doctor and I are no longer seeing eye to eye. I'm sure some of you can relate.

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Replies (4 replies)

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  • liandra
    liandra December 31, 2011 at 11:22 pm   

    i have to go for one in a month… im 16 and i have partial seizures and absent seizures. its the same with me i have normal eegs its crazy… i hate going to the nurologist cuz we never find anything

  • RhondaDB
    RhondaDB October 6, 2011 at 10:25 am   

    I've been for an extended eeg in the hospital and one thing they did was decrease my meds, so I wasn't totally off since that is not good. It took some time, but eventually I did have seizures they could get the information on. When growing up I remember having eeg's regularly for a while till my neurologist said mine seemed "normal", no sense in continuing them.

  • riverkings
    riverkings August 8, 2011 at 1:02 pm   

    I can so relate. Nothing is more frustrating than a doctor who sees your daughter for a few minutes every once in a while and yet thinks he knows everything and refuses to listen. I can totally understand what you are asking of the Doctor. in the beginning we had several EEGs that showed nothing even when she had a seizure in the middle on the EEG. We had an older Dr. that did everything by the book. We finally changed Dr and found one that worked with us great and was willing to listen to our ideas too. it makes all of the difference. I know doctors are leery of removing meds because it can throw them in to status so that may be why he is saying "no" but I have also heard of many people that have done it. Good luck, I know it sounds weird to hope for seizures but I will hope for seizures during your hospital stay.

  • Ariskakes
    Ariskakes August 8, 2011 at 3:46 pm   

    Your daughter had a seizure in the middle of the EEG and it was still normal? I can't imagine how difficult that must of been especially with a doctor that does it by the books only. I'm happy that you found one that was understanding. I do not deal with our doc directly… he has his PA deal with us. She is very understanding but she has to discuss everything with him and get feedback. I wish she could make the calls. Thanks again. I'll let you know how it goes.