Made of Gray

Surgeon, GI and a Seizure

Raising the Rare ChildHolly D Gray6 Comments

Monday morning (2/2/15) started out normal. The typical rush to get ready and out the door for OT. Caleigh was in a great mood. Giggling and smiling. We made it to her appointment and she went back into the clinic with her therapist and nanny. About 10 minutes before it was time for them to be done, they came and got me from the waiting room. 

Caleigh had a seizure. 

She was answering questions on her iPad and then stopped responding. Her head was down, so when they picked her head up, one eye was closed and the other one was dancing all around. They took her out of her chair, put her on the tumbling mat and then she was fine. Snapped out of it. The whole thing lasted less than a minute. She was back to smiling and giggling to the music by the time I walked into the room. 

These are complex partial seizures and they used to be Caleigh's go to seizure 4-5 years ago. There isn't any jerking, nothing is stiff. It's just a zoned out type of seizure. 

Why are they back? I blame nutrition. Caleigh's seizures happened all those years ago when she wasn't absorbing her nutrients, had a central line and her guts just weren't working properly. Also to blame... me. In a prove mom wrong kind of way because I cancelled an EEG that I had requested "just to make sure nothing else was going on" at our last neurology appointment. We have so much coming up with all of her intestinal stuff that I didn't want to add one more thing to our list. Obviously I'm kidding about it being my fault here, but really?!?

Point taken. We now have our Friday morning EEG appointment back in place and our emergency seizure meds dusted off "just in case."

Yesterday was our appointment with the local pediatric surgeon. The meeting went fine, but Eric and I weren't ready to schedule anything here at home. 

We've been talking to doctors in Pittsburgh and Boston, both the best intestinal centers in the US; each with teams devoted to the intestines and surrounding organs. Something in my momma gut is telling me to go elsewhere this time. Our trusted surgeon has moved and other than our amazing GI doctor there really isn't a complete team here. Caleigh's last surgery was so traumatic that I'm not sure we could sit in the same ICU for another month of our lives. Historically, her surgeries are long, generally with two surgeons and with a lot of scary complications. Nothing about anything that will happen in the next few months will be easy. 

We were able to sneak in time with Caleigh's GI while we were there yesterday. He works closely with the doctors at Pittsburgh Children's Hospital and so we've decided to start our search for answers there. If you can remember way far back... we took Caleigh to Pitt when she was a year old for a transplant evaluation. 

Today starts the planning phase of getting all her medical records transferred and figuring out how and when we will get up there.  We could leave next week or a month from now. We could fly up for a quick consult, come home and then drive back for the long stay. It's hard to tell right now. 

In the meantime, we will be working on a compounded multi-vitamin that Caleigh can take and hopefully absorb. We will be praying that the seizure on Monday was a fluke and the EEG shows that things are ok. We will be monitoring her blood work and watching for more bleeding events. We will be praying that nothing urgent comes up that pushes us to rush decisions. 


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