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abnormal eeg but no seizure activity?

Thu, 11/15/2007 - 15:26

Have any of you heard of an EEG being abnormal but no seizure activity found?

 

My 4 yo had an EEG on tuesday.  We did the sleep part first and I laid down with him to get him to sleep.  The tech was at the computer watching the readout.  When Gabe started the twitching that signifies sleep, I got up and walked over to the tech.  She looked up at me all surprised and said "he's sleeping?"  I thought they would know by brain waves that he'd fallen asleep.  That was the first weird thing.  Immediately after that the tech started trying like mad to call a doctor down to PERSONALLY look at the EEG. She left the room about 5 times trying to call a neuro.

 We moved on to the rest of the test and when she started taking the electrodes off, I expressed disappointment that we weren't going to be able to talk to the neuro before we left since I knew something was wrong.  The tech then told me I WOULD talk to someone because I couldnt leave with him until I did.  She ended up pulling a neuro out of surgery to come look at the readout.  That neuro came, looked and left without a word.  15 minutes later she came back and told me I HAD to stop at the neuro office before I left the hospital.

Here's my 1st issue.  First of all, Gabe's regular neuro and I BOTH were fully expecting to find seizure activity.  I spoke with the tech beforehand and she'd read his chart so SHE wouldnt have been surprised by it either.  It's not like he had a grand mal during the test so why all the frantic need to see a neuro RIGHT NOW? At most what was SUPPOSED to happen if the test was positive was that the tech would call hsi regular neuro and I'd stop by the office to pick up a script for medicine...the neuro and I had talked about this beforehand and had a plan in place because we were pretty sure.  Instead, they had to squeeze us in for an appt to actually SPEAK to someone before we left.

 Okay so finally 5 hours after getting to the hospital (the test was only 2 hours of that btw) I finally got to see the PA .The neuro herself was actually reading the EEG right then.  All she told me was that they found an abnormality that they see in people who DO have seizures, but they found no seizure activity itself.  She also told me the abnormality showed up during the hyperventilation test which maybe something DID show up there, but that was not the source of all the panic....an abnormality showed up within the first 15 minutes of the test and I know it.  So basically, after 6 hours at the hospital with a 4yo and a 17 mo both screaming they were hungry, I left with NO real answers.

 HOWEVER and this is the REALLY weird part.  They medicated him!  She stands there and tells me yes its abnormal but no seizure activity...but medicated him? AND they asked me not to tell the school about the medicine because they're afraid the school teacher will stop paying attention to the little things if she thinks its taken care of by meds.  The medication was NOT part of the plan if there was no seizure activity.  The doctor had told me if his test didnt show up with actual activity that they would reschedule an extended EEG so I find it exceptionally odd that they medicated a child with anti-seizure medicine when no seizures were found.  PLUS they have no appts open for 4 months but she said she'd call me in no more than 2 months with an appt so I get to wait and worry for that long before Im able to find something out. UGH.

 Do any of you know anything about abnormal EEGs that DONT show seizure activity?

 

Comments

Wow! I do not know what to

Submitted by eanj on Thu, 2007-11-15 - 18:20

Wow! I do not know what to say about this! My only advice would be to call and demand to have a neurologist call you back to visit about this. (Or a nurse.) There is no reason why they should not be able to do an over the phone consult to at least let you know what is going on.  Doctors and nurses do phone consults all the time for patients who are out of town. So there isn't any excuse for them not to call you back.

Jean

Wow! I do not know what to say about this! My only advice would be to call and demand to have a neurologist call you back to visit about this. (Or a nurse.) There is no reason why they should not be able to do an over the phone consult to at least let you know what is going on.  Doctors and nurses do phone consults all the time for patients who are out of town. So there isn't any excuse for them not to call you back.

Jean

Hi, first I am so sorry that

Submitted by AngelaW on Sat, 2007-11-17 - 10:08
sorry, double reply by accident!

Hi, first I am so sorry that

Submitted by AngelaW on Sat, 2007-11-17 - 10:03
Hi, first I am so sorry that you're going through this right now. Neuro issues, especially seizures can be so confusing, frustrating and scary. What they said is true -- you CAN have an abnormal EEG and not have seizures. What it means is they see some sharp discharges (brain activity) that indicates the POTENTIAL for seizures. My son had his first EEG when he was 15 months old. We were told the exact same thing you were told (abnormal EEG by no seizure activity) and they started him on medication -- Tegretol. It took a long time for me to understand the reasoning. I would suggest reading Partial Seizure Disorders: Help for Patients and Families written by Mitzi Waltz. This book helped explain the basics of seizures, tests and medications. My son did start having actual seizures this past year. It has been a rollercoaster and the confusion, heart ache and learning started all over again. We are blessed with a fabulous neurologist who took the time to explain in plain english what was happening. Jack is now on two different medications and seizure free (fingers crossed). There is no excuse for the doctors office to leave you hanging like they are. I would be the squeaky wheel and call every Monday until you are satisfied with the explanation. Also, about not telling your son's teacher -- I don't think I necessarily agree with this. In an emergency situation it is so important for emergency workers to know that your son is taking medication. If they gave meds without the knowledge of what he is taking the results could be toxic. It is suggested that people who take anti seizure medication also wear an ID bracelet for this reason. Please, feel free to email me with any questions. I really feel for you right now. My email is angwilhelm@gmail.com Take care, Angela Angela mom to Jack Riley http://www.jackrileywilhelm.blogspot.com

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