Well, That’s Surprising News

It’ll be two years in August since Lola showed her first sign of a clinical seizure — at least we thought it was a seizure. We had just left the dentist’s office and Lola was still recovering from the trauma of the appointment. I noticed her exhibiting some very strange behavior through my rear-view mirror. She hadn’t had a seizure in a couple of years, but like any parent of a child with epilepsy, I was always prepared for when that seizure-free streak could end. I pulled over and immediately began to videotape the episode which you will see below. I sent it on to Lola’s neurologist and while she wasn’t fully convinced it was a seizure, rather than having Lola endure yet another EEG, we put her...
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A Halt, But We’re Moving Forward

Thanks for contacting Say Hola Lola!

Last Tuesday Lola had her 24 hour video EEG at Riley Hospital for Children. You may remember, Lola had one last year as well so unfortunately we were no strangers to this long procedure. The hope in monitoring Lola’s brain activity was to help give us the reassurance we needed to start a wean off of her anti-seizure medication, Trileptal. Yet sadly, we did not get the news we had hoped for this time around. Last year, Lola was having abnormal spikes in her brain which we were told could potentially lead to seizures. Per the suggestion of her neurologist, Dr. Zimmer, we decided to keep her on the Trileptal for another year just to be safe. Her body was doing a slow wean anyways due to her...
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The Results

On Monday morning, without hesitation I called Lola’s neurologist in hopes to find out the results from her 24 hour Video EEG (VEEG). If you haven’t noticed, I am not a very patient person when it comes to my daughter and the healthcare industry. I want her to be as much of a priority to others as she is to me and I’ve had to realize that there are just certain things (like test results) that can’t be rushed. I spent the morning at work anxiously waiting for the call and it finally came…but unfortunately it was Dr. Zimmer’s nurse and not Dr. Zimmer herself. I’ll come back to why this differentiation is so important. The nurse said she had the preliminary results, but Dr. Zimmer was still...
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“Normal” Never Sounded so Good

Well first off we have BIG news to share…Lola’s EEG came back normal! Thankfully there were no signs of seizure activity which means that either the medicine is working or Lola is simply not having seizures. It is too soon to wean her off of the Trileptal as seizures could still do significant damage, but the fact that she is still seizure free is an excellent sign. We were told the doctor would call if she wanted Lola to have a 24 hour EEG to determine if Lola is having seizures as she sleeps, but the fact she hasn’t called yet leads me to believe that Lola is simply living a seizure free life. We are incredibly grateful for all of the extra love and prayers you sent...
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An EEG and an Afternoon

This morning we were up bright and early to head down to Riley Children’s Hospital for Lola’s first EEG in the United States. I had been to two EEG’s with Lola in Costa Rica, so I was interested to see how the two locations would differ. Have you ever seen such a cute pilot before? We were immediately called back and the nurse began to wrap Lola up like a little burrito in order to restrain her arms. Most of you that read this blog know very well Lola does not like any type of restraint (hugs included) therefore we knew it could go one way or the other. Either she would scream and protest or she would actually enjoy it given her early days of being swaddled....
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