Since my last update on Pickle there has been a significant if subtle change. We have transferred her care to a different neurologist. As her seizures became more unpredictable our communication with her doctor became equally chaotic. Basic care and simple questions went unanswered. I am very grateful that hospitals have Patient Relation and Advocacy available, but even so, we experienced first hand how vital it is to push, politely but firmly, for what is best for your child and family. I'm not a confrontational person. However, my Mama Bear instinct was on high alert and would not relax.
We saw Pickle's new doctor on Wednesday. All the effort, time waiting on hold, and retelling to half a dozen people why I desired a change of provider was worth it. Well worth it. Dr. Byler allowed us time to ask questions and provided us with the best answers she could give us. That was all we had previously been looking for. David and I both feel we have a better understanding of what Pickle needs and where her care will go from here.
What we know: Pickle has seizure tendencies. Her right occipital lobe is producing electrical bursts that keep her close to seizure activity- especially during sleep. She is considered to have epilepsy because she has had two seizures that did not have fevers associated with them. When she does seize, we believe her seizure remains focused in one spot known as a focal seizure. Because there is no known cause for the seizures they are considered idiopathic. Therefore, her diagnosis is idiopathic focal epilepsy stemming from the right occipital lobe.
What this means: It means the best thing for her, right now, is to use medicine to prevent her from having seizures. She could outgrow these. It could be her brain, neurons, and chemical make-up is maturing more slowly and just needs time. Preventing seizures allows her body to mature at its own pace. However, she may not outgrow the seizures, but only time will tell. Right now the goal is to not have them. Once we go 3 months without a seizure we can do a high-five. At 6 months, we do a happy dance. At one year seizure free, we celebrate. At two years seizure free, we start talking next steps. Those next steps can be anything from reducing dosage, a new EEG study, or removing medication entirely. But that is all in the future.
How this impacts our life: We are still adjusting to this new reality. In practical terms, it means we need to be more aware of the activities Pickle participates in. Swimming, climbing, bike riding and all the other antics little ones get up to need to be supervised more closely. If she seems like she's struggling (and yes this requires a mother's attention to detail), then she may not be able to participate. However, if the medicine does its job, she should be able to do most anything she desires even if we're closer at hand then she prefers.
The one puzzle piece that remains a mystery is her fever episodes. We have to continue to be vigilant in journaling any of those episodes. We are also going back on an anti-inflammatory diet. It may not impact whether she gets a fever, but we have noticed it does impact how sore and uncomfortable she is during a fever.
We may not know what is exactly happening to Pickle, but we feel confident that we are getting the care she needs and pursuing alternatives that are right for all of us. I am okay living with the mystery of why she has these challenges.
As the feelings of crisis and loose ends abate, I am delighting in thankfulness. God has given us the resources (financial, intellectual, professional, physical, and spiritual) to meet Pickle's needs while we trust Him to bring her complete healing. He has surrounded us by friends, family, the church, and total strangers who have helped give advice, sent gift cards for meals, and upheld us in prayer. God has definitely answered our prayers even if He hasn't given us answers. To God be the glory.