EEG

Since we are three hours away, we really try and make the most of our appointments at Primary’s. This day was a LONG one but we were able to get a lot done!

Lab Work

First up, was lab work. After our last meeting with the neurologist, they put in more lab work for this little lady. Unfortunately, Lydia seemed to inherit my bad veins. They always struggle to get what they need. After trying several times {the poor girl}, they were finally able to get some blood. However, it was coming so slow that it began to clot and they also got less than half of what they were supposed to get.

Oh geez.

One of the wonderful things about Lydia during all of these appointments is how relaxed she is. She hardly ever fusses and if she does, she is super quick to calm down. But as nice as this is, it also makes me sad. Even though they had to poke her several times, Lydia never cried during her lab work. That’s not normal. And even though I am grateful in the moment, I can’t help but wonder why.

They also needed a urine sample but we weren’t having any progress with that. They were hopeful that they got enough blood and I asked them if we could get a urine bag “to go” and bring it back later.

So Lydia and I left Primary’s and went to meet my parents nearby for lunch. It was nice to see them and catch up. Plus, Lydia and I usually sit and eat in the backseat of the van, so this was a nice upgrade 😉.

While we were at lunch, Lydia pooped which contaminated her urine sample. Oh geez. I also got a call from the lab that they needed more blood from Lydia since some of it had clotted.

After lunch, we headed back to Primary’s for Lydia’s EEG.

EEG

This was a first for Lydia. This was another addition made at her last neurology appointment. They are concerned that when she zones out that there might be some seizure activity. This would most likely not be the cause of everything, but it could be another piece of the puzzle.

I didn’t really know what to expect for this visit. They took us back into a darkened room. And they then gave me a five minute pep talk telling me what they were about to do and that it might be hard for me to watch. Basically, they needed to hold Lydia down while one of them put all of the little electrodes on her head. They told me most kids scream, kick, thrash around and all of that. I asked them if I could swaddle her and that that might make it easier for her and for them.

So we swaddled Lydia up and…she didn’t make a peep. She didn’t move around at all and just laid there. Again, as grateful as I am {and as shocked as they were!}, it’s a mixed bag of feelings with this. It’s hard for me because I can’t help but wonder at how disengaged she is with the world around her.

They were able to get all of the electrodes on and they had me lay with her on the hospital bed while they put a blinking light in her face. They did this for about three minutes. After that, they told me they were going to leave for about 40 minutes and my job was to try and get Lydie to sleep.

I was a little skeptical about whether or not she would. It was her normal nap time but once our kiddos reach about 4 months, we really try and teach them to sleep without us holding them. So they usually do better on their own by this age. But after about 15 minutes of smiling at me, she finally conked out. And it was actually a sweet time just to be alone with my little one even though it broke my heart to see her all wrapped up.

When they came back in, they told me that we would get a call with her results in a couple days.

Lydia looked pretty haggard by the time we left. When they took the electrodes off her hair she was a sticky, crazy mess. And as much as I really wanted to just take her to the car and start our drive home, we needed to go try her lab work again.

This time, I asked for her urine bag at the beginning {see I am learning!} and put that on hoping she would go while we did her blood work. They thought they could get what they needed from her heel, and so they did that instead.

Lydia was definitely feeling tired {and it took forever again to get what they needed} so she was a little more fussy this time around. I felt so bad seeing her all bandaged up from all of this bloodwork. She now had both hands and her foot wrapped up.

BUT even though they were worried about it clotting again, they got when they needed {and got a clean urine sample!} and we could finally begin home.

Lydia then went through a loopy phase and pretty much giggled to herself for the first hour we were in the car. I love that little girl.

Results of EEG

As I’ve mentioned before, Mark and I are getting really good at reading things ALL the things on Lydia’s chart online. We saw the day after the EEG that Lydia’s results were in. It’s hard because we just don’t understand the lingo, so we ended up “googling” different phrases and terms. Basically, we knew something was there but we didn’t understand what it meant.

Finally, after a week, we received a message over Lydia’s health portal from the neurologist. She said that her EEG came back as abnormal. She further explained that she had some sharp wave forms in her sleep that are “suspicious” for a seizure tendency – but no actual seizures were captured.

This still makes no sense to me (but we have also yet to actually talk to the neurologist) that they can see a seizure tendency even though no seizure was captured. But it’s one of those things where we are just trusting the experts on 😉

Lydia’s case has been given to a epilepsy specialist and she believes we have three options:

Option #1

Begin anti-seizure medication and monitor to see if she improves. After two years, repeat the EEG and see if she has normalized.

Option #2

Perform a longer EEG (over 3-5 days) with the hope of capturing one of her “events” to see if she is actually experiencing a seizure.

Option #3

Do no additional testing or medication unless her condition worsens.

The Plan

After Mark and I talked things through, it just didn’t make sense to us to throw medication on something that we didn’t understand yet. So we opted to do the extended EEG.

The neurologist agrees that this is a good plan moving forward. Luckily, they are allowing us to do this at home. A tech will come to our home (YAY!) and put the 21 electrodes on her little noggin and wrap her up so she can’t pull them out, they will bundle the cords as much as possible, and will also set us up with a little tripod with a camera so they can monitor her movements on their end.

This will happen at the beginning of March.

We are grateful and nervous to see what the results may show. But at least we have a plan, and I am grateful for that. Lydia continues to just be the most calm, peaceful, and wonderful little girl. She fills our lives with so much joy and we hope we can help her in the best way we can. We love you, Lydie Lou.