EEG

Sydney's trip to Pch was a success and thrillingly shorter than planned trip!

She wasn't the biggest fan of getting the probes glued to her head, but thanks to bubbles she made it. We played with bubbled all day long for 3 days straight it seems. We had the catchable bubbles so they were all over the room, bed, floor, monitors and Sydney. What ever works!!

The point of the visit was to find out if what we have been calling seizures for the last 4 years were actually seizures. So she was hooked up to the EEG and taken off her seizure meds and monitored and videoed.
The nurses and Dr.s were so kind as always, it was nice being back on the 1st floor were we knew many of the nurses that walked in the door. It was funny to see some faces when I'd turn around and they'd see my belly. Many informed me they treat little ones, they don't deliver them. I kept reassuring them that wasn't in my plans for the visit! Neil came to visit the first night, which Sydney loved!

It is crazy as a mom to want a seizure, but by day two we were just waiting, and hoping. Sure enough the night of her second day she had one. It was a bit tricky to get her out of, but it was an accurate example of what her seizures did with length, body movement, breathing, and saturation. She required oxygen and monitoring for a while after due to needing to sedate her, but after her one they were able to put her back on her meds, not feeling the need to catch any more.

They were able to officially diagnose them as seizures. It is good to know we are treating the correct thing and she isn't on unnecessary medicines. She was not a fan of having the probes taken off, she was royally ticked with the teck until he let her play in the water, then she was a little more accommodating.

Summary of what we have learned: We are a bit more confused. But we have more facts to work with, they just aren't clear yet. Kids with GA1 have two mutations in the DNA, they only found one at this time making her a carrier, but feel the technology isn't available yet and when it is they will find the second and that will explain some of her symptoms. Most kids have this screening when they are a newborn, but she doesn't show signs in the normal blood as other kiddos do. Kids with GA1 don't have seizures, they have more cramping distonic episodes, like we saw last November/December. So finding the seizures leads Dr.s to think there is something else along with GA1 going on. That will be looked into at a latter date after all the baby's test come back. For now, Sydney's diet has been adjusted to accommodate her seizures, and GA1. She is doing amazingly well with her growth and development right now, so we are enjoying her thoroughly and will readdress things later. We love and appreciate all those that have been so helpful with Carter and keeping our family in your prayers!