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Been to an Epilepsy Monitoring Unit? What’s it like?
Epilepsy & Seizures | Last Active: Jan 24, 2023 | Replies (42)Comment receiving replies
Hello @suellipo68
I am so sorry your experience was horrible. I am hopeful they were able to find some answers that you were searching for. May I ask if you were the patient or was a loved one?
Sincerely
Dawn
Replies to "Hello @suellipo68 I am so sorry your experience was horrible. I am hopeful they were able..."
@suellipo68 Thanks goodness your son has you by his side advocating for him. It sure sounds like the situation you were in included unnecessary and avoidable anguish for both you and your son. In many monitoring units, a family member can stay with the person being monitored. At Mayo Clinic, we encourage a family member to be present at any time including overnight as long as it doesn’t interfere with patient care. We also designed our rooms in the epilepsy monitoring unit so that there is space for a family member to stay.
As you can read from the experiences below from others like @findanswers @cmcafee and @patrassi, the procedure is still very anxiety ridden for both patient and accompanying family member.
I'd like to ask all of you, what could the monitoring staff do to help decrease the stress for the family members or what did a staff member do for you that went above and beyond to help you?
All the time we were at Monitoring unit , the pediatric staff was so kind and attentive to me and my family . They provide video games , tablets and toys to give him confidence and distraction ... the meals were nice and the nurses and doctors really good! I can’t say that any could be done to give us , the family, some relief in those days... but the trust in the hospital , doctors and everybody that was involved in the procedure gave us confidence to continue... my heart was full of fear , but there was so much hope that we could resist it! Thank you all in Saint Mary’s hospital!
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I am the mother. I brought my son to a unit on Thanksgiving week (don’t want to disclose where we went). To add to the already unpleasant experience of forcing multiple seizures, The staff was was short and the atmosphere was cold and non attentive. Some of the things that happened were cruel. I had to advocate for my son and got in a half dozen confrontations. I couldn’t believe the the treatment received for something so serious. There was no way I could have left my son (adult ) at the hospital to endure this experience on his own. Answers were not complete and had to do follow up tests later in to the next year to confirm the appropriateness for surgery. Next step a diagnostic surgery.