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 natural weight gain so we just left her medication dosage alone (although we did end doing a slight decrease over the summer).
This year the EEG indicated that Lola is having what are called subclinical seizures. This means that while we can’t see the seizures in a clinical state (meaning she is showing physical signs), she is indeed having them but only an EEG is able to pick them up. These seizures are focalized to her occipital lobe (where vision occurs), but she is also having the abnormal spikes (just as last year) in generalized regions of her brain. The subclinical seizures are not necessarily harmful, but they do cause a disruption to the neuropathway activity process. They can cause staring spells, memory loss and/or lack of cognitive gains. In older children they can cause aggressive behavior and academic gains can be troublesome. At this point in Lola’s life, it’s hard to tell what type of effects these seizures are having on her ability to learn. We have always thought Lola has intelligence, but you can see some things are easy for her to learn and others are extremely difficult. We don’t know if this is due to the seizures, the unknown diagnosis or if this is just Lola. Regardless, it is imperative these seizures get controlled.
We have already increased Lola’s Trileptal dosage and we will do so again in two weeks and then again in two more weeks. She was on a very minimal amount of Trileptal to begin with and even after three increases, she will still not be on the maximum allotted for a child. In about six to eight weeks from now, we will take Lola in for another 24 hour video EEG. If there are signs of improvement on the EEG then we will simply keep her on the Trileptal. If she continues to have these subclinical seizures then we will look at switching her to another type of anti-seizure medication.
So how are we taking the news?
Well it sucks to be quite honest. Truthfully, I didn’t think Lola was having any type of seizure activity which is why I didn’t feel nervous going into the EEG. This is most likely why this news was especially devastating to me. But after a good long conversation with Lola’s neurogeneticist, Dr. Walsh (who will soon be her primary neurologist), I am just happy we are getting our girl taken care of. Dr. Walsh said if Lola had to have a type of epilepsy, this would be the mildest form. And the fact that she is showing no clinical signs is really quite promising. He can’t predict what will come of Lola’s epilepsy and it’s unfair to ask him to look into his magical ball to give me answers. All we can do is hope Lola shows no clinical signs of seizures and that her brain responds well to the increase in medication. I had hoped to wean her off the Trileptal, but Dr. Walsh said Trileptal is actually a good medication for her to be on. It has little side effects and her brain has responded well to it thus far (or so we are thinking). You know most people are on some type of medication to help with some type of ailment and this might just be Lola’s. She may indeed live a life with epilepsy, but we knew that since she began having seizures at four months old. Or she could completely outgrow the epilepsy as well. We don’t know and we can drive ourselves crazy speculating about what the future will bring. She is still healthy, she continues to make incredible progress and by golly she is happy. As a mother, this is all I can ask for.
Just as I appropriately titled this post…this news brought us to an abrupt halt, but by staying informed, aware and hopeful, we are now moving forward inch by inch…one day at a time.