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BoiseMom

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Reply with quote  #1 
Hi everyone. I was wondering if anyone has had an EEG come back as abnormal due to “epileptiform discharges” although known seizures have never been present. My 5, almost 6, year old has had CVS (calendar kid) since she was 13 month old. I have had migraines since I was 12 so I am sure this is where she got it. Although she has had 3 previous normal EEGs (one ambulatory just after attack ended) over the last 2 years, this most recent one catching the entire attack showed abnormal with the discharges. I asked her neuro if these spikes could just be due to the CVS attack since I know active migraines can produce abnormal brain activity on EEGs. She said “no, this was different” and that my child has a “98% chance of going on to have epilepsy.” She also said we just take a “wait and watch approach” to see if she starts having seizures, and if so, call her. Waiting and watching is not okay with me considering I have read multiple hypothesis and studies that epileptiform discharges can be just as, or even more impacting to the developing brain of a child. I do not want to just put her on seizure meds assuming they will stop the discharges without knowing how often they occur, etc. Nor do I want to turn a blind eye and hope for the best.

At this point I don’t know if I should take her to Wisconsin to see the CVS specialists, take her to a neuro-gastroenterologist, or just keep going to our doctors here in Boise. I feel pushed aside and lost. I have been trying to do as much research online as I can, but I still don’t know the best course of action. The stress the last few years has been awful, but these new findings now have me scared to death.

Does anyone have any information or advice? I so very much appreciate any feedback.

Thanks.

Stephanie
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ginny

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Reply with quote  #2 
This is something I have not heard about.  I do think you are right to consider WI and another doctor for a second opinion.  One of my kids has a history of seizure but her EEGs were normal.  All were done after keeping her up all night and having her asleep during the EEG.   I don't know anything about ambulation EEGs.

As you know, continuing to test is important to be sure that CVS is the correct diagnosis.  Please let us know how your further consultation goes.  I hope there is an answer for you to help your child best.

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BoiseMom

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Reply with quote  #3 
Thank you, Ginny. I appreciate the feedback.
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wynnak

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Reply with quote  #4 
I definitely support looking for another doctor. If Milwaukee is not an option, a neurogastroenterologist is a good option as well. 

As a parent, I would go with your gut. 

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