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 going over the final report. But from what she could see, Lola was not having any seizures. Ecstatic, I teared up and thanked her for calling. As soon as I got off the phone and shared the news with my co-workers, I had this gut feeling that I should have kept the news to myself until I heard from Dr. Zimmer. But my co-workers were sharing congratulatory hugs and I shared the same happiness. Then not more than an hour later, I got a phone call from Rob. I could tell hear the hesitation in his voice as he said “I just got off the phone with Dr. Zimmer” and then Rob proceeded to tell me what Dr. Zimmer had to say in her own words.
He made sure to preface it with, this is not bad news as he told me that Lola’s brain activity is not showing actual seizures, but when she sleeps she shows some erratic activity that could potentially lead to seizures. And for this reason, Dr. Zimmer decided not to take Lola off the Trileptal as she wants to give Lola’s brain as much off a chance to grow without the impact of seizures. She can’t say if the Trileptal is stopping this erratic activity from becoming seizures or if this is simply the way Lola’s brain activity is. Regardless, Dr. Zimmer thinks the risk is too great and therefore Lola will remain on the Trileptal at least for another year. At that time, she will have another VEEG (ugh!!) to see how the activity is looking. If it is still the same, Dr. Zimmer said we must determine if we want to treat Lola’s EEG or if we want to treat Lola as an individual. But that won’t be for a while so for now…we are treating Lola’s EEG.
In all honesty, I had a feeling this was going to happen. Remember, I watched the entire VEEG as it was recording Lola’s brain waves in the hospital. It was in this time, I saw the technician rewind through the night’s activity and document “Activity in the Occipital Lobe“. In fact, I could see the erratic activity myself as it looked nothing like what the rest of the EEG looked like. So, I was bracing myself for this news as I kind of just had that feeling. I didn’t think she was having actual seizures, but I sensed something wasn’t right.
And this is precisely why I have learned to listen only to the doctor and no one else. We had this same type of thing happen in Costa Rica when an EEG technician vowed that Lola was not having seizures. Even as Lola awoke from sleeping because of a seizure, she was adamant to tell me that she had seen plenty of EEG’s with West Syndrome and Lola’s EEG looked nothing like the others. So I left the Costa Rican hospital with hope that I had some how made the seizures up in my mind. And then two days later, we were told that Lola did indeed have West Syndrome. So I was kicking myself in the ass yet again when I allowed myself to trust someone other than Dr. Zimmer. Sure the nurse was right in saying Lola was not having seizures because she wasn’t, but she didn’t have enough information to elaborate which is why I should have just waited for Dr. Zimmer’s call in the first place.
Because Dr. Zimmer knows how I like to speak to her myself, she called to discuss the results with me yesterday. I fully trust Rob and his capabilities of telling me every detail of their conversation, but Rob as well as Dr. Zimmer know that I need the information firsthand…regardless of what the news is.
Dr. Zimmer told me about the erratic brain activity, her thoughts on staying on the Trileptal and just about Lola’s brain activity in general. She said the amount of activity is slower than what you would see of a typically developing child and this just means Lola is delayed developmentally by a few months which we obviously already knew. She said the activity in the occipital lobe (where vision takes place) is much slower which again just confirms why Lola’s eyesight is so strained. Lola can see, but her brain doesn’t get the signal as quickly which makes it hard for her to understand what it is she is seeing. But we are witnessing her eyesight get better each and every day which is a very good sign. I asked Dr. Zimemr about the long term effects of Trileptal and she said if she had to pick an anti-seizure medication she would choose Trileptal as it has the least amount of side effects. You may see a decrease in Vitamin D or iron, but she pulled up Lola’s last set of labs and said they all looked normal. We aren’t going to increase the dosage (2 ml twice daily) unless we see any suspicious seizure behavior (long staring spells, extra groggy). She felt overall Lola’s VEEG looked quite good compared to those of other children with infantile spasms, developmental delays and other forms of epilepsy. She couldn’t say whether or not Lola would go on to have a different type of epilepsy, but the fact Lola has responded so well to medication and has not had seizures in so long are all positive signs. We are to keep doing everything we are with the therapies and she said we would hear from her in about a month regarding the second round of genetic testing.
So while we can’t take our babe off the meds, she still is not having seizures which is a blessing. She is thriving, she is learning, she is blossoming and she is such a happy soul. This week she officially learned how to drink out of a straw (thanks to our new speech therapist who we love!), she is communicating more and she just keeps getting stronger physically. Next week her PT is bringing a gait trainer in an effort to teach Lola how to walk. Now that is a crazy thought…Lola walking!
We have to thank all of you readers for your ongoing love and support for Lola. I can’t express enough gratitude for your thoughts and prayers over this past week. It took an emotional toll on all of us, but we have such special people in our lives that it makes facing these challenges a little bit easier.