We know many of you have been praying for us this week as we made the trip to Johns Hopkins, and we are very thankful. We wanted to take a quick minute to give you an update.
We had a consultation with the director of the pediatric epilepsy center this morning, and she gave us a lot of information to think on and pray about. First, she did reassure us that we are on the right track with medications. We are at the max on one, but we do still have room to go up on the other. Once the other is maxed, there isn’t much else to do with medications.
Since Harper has a history of going into status with her seizures and has recently developed a tendency to stop breathing when she has them, she recommended that we no longer wait on administering the emergency meds. As soon as we see her seizing, we give it.
Our biggest concern was what comes next in Harper’s treatment. After the last EEG study at Duke, we had been given bad news, that surgery wouldn’t be an option and meds would become ineffective and there wouldn’t be much to do. However, Dr. Kelley reassured us that this is not necessarily the case. We do still face the medicine risk, but surgery is not completely ruled out. Rather, we need further testing. They want to evaluate her MRI images to look at the cyst in more depth, and they would do another extended EEG study (about a week long). She said the cyst may be blocking some of the data, and they could also do a study in which they actually place probes on her brain rather than her scalp.
Those are things for us to pray about. For now, her meds are working fairly well, and there is room to increase one. Obviously we don’t want to do surgery unless necessary. However, she has a pattern of going through this honeymoon phase with the meds and then out of nowhere going into major, life-threatening seizures. Operating on her brain could stop the seizures, but could also impact development and certain skills depending on what area of the brain they pinpoint. On the other hand, the younger she is, the quicker the recovery and the more likely she is to regain those skills.
Heavy decisions, and a lot to process. In the meantime, we head back home. We continue to go to Duke for her immediate care, but make sure everything is relayed to Johns Hopkins. We are supposed to get her vision tested because the cyst is in a location that can be interfering with certain fields of vision. And Dr. Kelley highly recommended having neuro-psychological testing done… we can do that in NC, but would possibly have to have it redone up there if we go through with any other testing, so we have to decide how to proceed with that.
So, that’s that. We walk away with hope for future options, but the weight of big decisions. We feel very comfortable with this doctor and her level of confidence and expertise. It’s a long, expensive trip for treatment, but we feel it’s worth it. God has big plans for this girl and her story is far from over!