72 Hour EEG

About a month ago, Lydia went in for her first EEG. The results showed that it was abnormal. Lydia didn’t show a seizure but it showed a “seizure tendency”. We were given a couple options and decided that we wanted to do further testing to see if we could figure out IF there was a problem before we moved forward with anything else.

A week and a half ago – our time came!

I was a little nervous going in. They explained what it would look like but I still felt a little unsure of what to expect. But for the most part, I was optimistic. I was also hopeful that this would hopefully rule out anything with seizures.

Day 1

The tech got here at about 9:45 on Friday morning. She was really great and Lydia was in a really good mood when she came. She was all sorts of giggly which is a little unusual for her! First it was just a lot of setting up. There was a briefcase with a laptop in it that needed to ALWAYS be connected to a tripod with a camera on it. So once we got all of that connected up, it was time to put on the electrodes.

I guess they prefer to have more than one adult help the tech to put on the electrodes. Mark was at work and so it was just me and the kiddos (who were all downstairs in their fort watching a movie). Our tech and I had to get a little creative but we decided to swaddle Lydia’s arms and then put her in her highchair. This would keep her arms and legs under control and so all I would have to focus on was her head.

Putting on the electrodes was a LONG process. First, the tech took a giant marker and did a lot of measurements on her head. There were 21 electrodes that needed to be applied and a strip of gauze to go over the top of each one of them. Lydia was a mixture of tolerating it and sad. By the end, she was pretty wiped out and it was hard to see her so fatigued.

Then we needed to make sure everything was put on correctly and “talking” as it should with the people on the other side. Once that was all worked out, she bundled up all of the cords and connected it to the “box” which we were to keep in a backpack next to Lydia at all times. We were also given several journal pages to keep track of the start and stop times for when she ate, slept, and put in her gel for the electrodes. I was given more instructions and signed a lot of paperwork. And then we were on our own!

Lydia did really well on the first day. The biggest stressor BY FAR came that night. Mark was working a super long day and so it was just me and the kiddos. I was really nervous to put in the gel for the electrodes. I didn’t know what I was doing and I had no idea how I was going to keep Lydia’s head still to put it in. I finally had to get Jacob to hold her hands, Sarah to hold her head, and just went for it. It was stressful.

Sleep was not great. She didn’t fall asleep until 10:30! But, she DID sleep in which honest and truly, NEVER happens (she is usually up around 6:00)! Finally, at about 8:30, I went in to check on her and she was awake.

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Day 2

Once Lydia got up, we tried to do her gel. We were unable to get the camera to connect after we moved it from her bedroom into our living space and after doing all that we could think of to troubleshoot, I called the help line. They were really quick in getting back to me (it was a Saturday so it was not normal business hours) and we were able to get things back up and going. One of the electrodes also needed extra gel and so we figured that out.

After that though, the day was pretty smooth sailing. Lydia was so good about everything. We kept things very lowkey at home.

Day 3

Our final FULL day was Sunday. Mark and the kiddos went to church in the morning while Lydia and I stayed home. The day continued to be pretty relaxed. Lydia was pulling on her hair a little more and we could tell she was getting pretty tired of the whole thing. We had some more issues with some gel but they were easily solved.

Final Day

We were really excited when Monday rolled around. The removal process was SIGNIFICANTLY quicker than the putting on. The tech was in and out in less than 30 minutes. Lydia was so happy to have them off. As soon as the tech left, I immediately put her in the tub. She took a nice, long bubble bath. I washed her hair five times and it still was super rough.

Something I was not expecting was how rough it would be AFTER it was over. Lydia was so tired and so I took her out and started to try and comb through her hair. I have gone through a lot of snarly hair in my day (between my own and Sarah’s) and nothing compares to this! Oh goodness, IT WAS BAD.

We never put Lydia in front of the tv, but I put a Mickey Mouse Clubhouse on the iPad and tried to go through her hair. It was super slow moving. And one time I reached behind her and gave her a hug and she laid down on my arm and fell asleep! WHAT?!

This was a new one.

I quickly gave her something to eat and laid her down. It was the best nap she has taken in a long time! The poor little munchkin was so tired. It was so nice to just snuggle her without worrying about her cords, backpack, and monitor.

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Results

We actually got the results a lot sooner than we expected (within four days!). However, results were really not helpful. Here is the message we received from her neurologist:

“It continued to be abnormal with some slowed background (common in children with developmental delay) as well as sharp waves (compared to more rounded, curvy waves) suggestive of a seizure tendency. However, no actual seizures were captured, just the suggestion that she is at risk for them.”

Basically, we didn’t learn anything. That is the same information they got from her initial one hour EEG.

We have so many questions. Where do we go from here? Don’t you either have a seizure or not – what does a “seizure tendency” even mean?

We are waiting for more information from our neurologists and then I guess we will decide where to go from here. Thank you for everyone who has reached out to us and shown us kindness. It really does mean more than I can say.