Today we saw Dr. Terrill at Children’s Plano. We did not discuss the tumor itself, but this was more of an appointment to figure out how to manage Kinslee’s symptoms and to figure out the cause(s) of her episodes, aside from whatever the tumor is doing. The good news is Dr. Terrill was VERY thorough, the bad news is there will be many more trips to Dallas in our future. Our appointment was an hour long and he took the time to discuss ALL the things.
For reference, here is Kinslee’s current medical team that I reference below:
Dr. Terrill - new neuro specialist at Children’s Plano
Dr. Blalock - cardiologist at PHS Tyler
Dr. Baker - neurologist at Christus Tyler

First, he said we need to look at Kinslee’s different episodes separately. He thinks the passing out is vasovagal syncope. This was previously mentioned by our cardiologist as a possibility, which is why Kinslee wore the heart monitor for a week in April. He said we need to see her again to continue to pursue this, so we will be scheduling a follow up with Dr. Blalock. He did mention the syncope is not curable and she can’t be given an easy medication to fix it. Eventually she will grow out of it, but it’ll be when she’s much older. For now, we can just be preventative by changing her diet and fluid intake and helping her circulation. He also stressed the importance of being very mindful of Kinslee’s activities. We don’t want to restrict her activities. But she will need to be watched carefully. She can’t be alone in the bathtub, alone in a pool, and has to be monitored when playing on playgrounds, biking, etc.

He said the second type of episodes is what he is more concerned with identifying. The ones where she stares into space and loses her vision. Although Dr. Baker previously ruled out seizures, he said he’s not 100% convinced yet and would like to do more tests to rule out seizures. We’ve also decided to start Kinslee on a seizure medication to see if it eliminates any future episodes (more on this med below). In regards to this, Kinslee will be having another EEG done through Children’s Plano. This one will be different than the two she’s had before and will be about 4 hours long.

Also in relation to these episodes, he was confused as to why Kinslee has not had a sleep study done yet. He said she should’ve had one with her tonsillectomy (which she had done due to a blocked airway that was causing sleep apnea). He said if she is still having sleep apnea, it could be the cause of many of her symptoms, including the more recent headaches and fatigue. So we’ll be doing a sleep study as well. This will either take place at Children’s Plano or Children’s Dallas.

We discussed Kinslee’s headaches and excessive fatigue and he was very concerned about the headaches. He said she is having way too many and they need to be treated with something other than Tylenol. He said our goal is to see a 50% reduction in how many headaches she’s having weekly. So we are going to start her on a medication for this. The medication is a seizure medication and used to treat children’s migraines, so it takes care of two of our issues at once, so she will only have to start one medication! The downside is that the side effects of this medication are very similar to what Kinslee already experiences with her episodes, brain fog, fatigue, etc. Therefore, it may become difficult for us to differentiate between side effects of the medication and an episode. If she doesn’t do well on the medication, we will switch to something else to treat the headaches.

Finally, he was very confused as to why NO ONE has EVER done blood work on Kinslee! Justin and I discussed this a few weeks ago and have also wondered. He said “well we’re going to do that right now.” And ordered a full panel and then some on Kinslee. He said it’s important that we rule out anything autoimmune, thyroid, anemia, etc because any of those could be contributing to her symptoms. So she did blood work today and we should have all of this back by Tuesday or Wednesday. If all is good Kinslee will start the headache/seizure medication.

He ended our appointment by saying he’s not 100% satisfied with this plan, but it’s a starting point. He agrees that the end goal is to have Kinslee feeling happy and healthy. We feel very good about adding him to our medical team.

So, we have a busy schedule ahead of us! We will get labs back next week, Kinslee will start new meds, Monday we will get a date for an appointment with a surgeon at Cook Children’s (Fort Worth), we will have an EEG in Plano, a sleep study in either Plano or Dallas, and we will see Dr. Terrill again in August. Dallas is slowly becoming our second home! But we feel peace in knowing we are making progress in our journey and after today we feel good knowing we can keep Kinslee comfortable at home while we wait for what is to come