Hospital visit for Seizures

Yesterday Oaklynn and I went to a church picnic. My dad, sister and her husband were there with us (Austin was at work). We sat down and ate and I left Oaklynn in her stroller to eat some lunch. After I was done eating, I took her out of her stroller and sat her on the table in front of me to hang out with us. 

About 10 minutes later she started having a small seizures where she rolls her eyes back, sticks her tongue out, blinks her eyes and moves her head back and forth. I have seen those before so I wasn't too worried. Well, they didn't stop. She would go 30 seconds to 1 minute and another one would happen. They started turning into ones where she would drop her body and close her eyes and go limp for a couple seconds. 

She had about 12 seizures in a 30 minute span. After about 8 seizures I gave my dad my phone to record the next one. Luckily we got 3 on video. I usually only see this a few times a week, not this often. Below are two videos of the seizures my dad recorded.The first one is the one I see most often. The second video is the one where her body goes limp. There were 12 of these over and over again.

We were just planning to keep an eye on her and if it happened again, to take her to the ER. I talked to another Rett mom who suggested to take her in just in case the random cluster was caused by some sort of infection she had. She threw up last Monday morning and had diarrhea for a few days so I thought that maybe she does have an infection. I called our neurologist office to talk to the doctor on call and he said I can either watch her and take her in if it happens again,  or take her in now if we feel it could have been caused by an infection. He said he can't tell us what we should do since he didn't see the seizure and doesn't know exactly what kind they were.

We  decided to take her in to play it safe. We went to Banner Desert since they have the Cardon Children's hospital there. We waited for only about 15 minutes. We got back into a room and they started asking us questions about her. Both the nurse and the paramedic student (I think that's what he was) had never seen a child with Rett syndrome. The good thing is they were asking lots of questions about it (I'm all about spreading awareness). I pulled out the video to show everyone (I love that my dad suggested doing a video) so that they could see the type of seizure she was having. The doctor finally came in and asked if we would like him to call the neurologist at Cardon children's or the neurologist at PCH (Phoenix Children's Hospital). We have been to both and were not pleased with the ones at Cardon's so we asked him to call the ones at PCH. He came back and said that they wanted us to go to PCH and get an EEG done to see what is going on.

We left there and went over to PCH and holy cow that waiting room was a joke! Luckily they called ahead for us and put us on the emergency list since we were coming from another hospital. We waited about 15 minutes before we got in a room. After a LOT of waiting and repeating the same stuff, the neurologist called and said that he wants to run some tests on her to see what is going on. I had showed the doctor at PCH the video and she explained it to the neurologist. He said it sounds more like "Infantile Spasms" than a seizure. She said they are a lot alike, they are just in different parts of the brain.

Cardon Children's told us that we were going over to PCH to get an EEG done but PCH told us that they weren't going to do that, they just wanted to admit us and start some tests and the neurologist would come in the morning to look at her and maybe give us some medication. We told them we wanted to discuss it and we would let them know.

We decided that since they weren't going to do an EEG, we would just take her home and watch her on Sunday and call our neurologist on Monday and get her seen then. It was a very stressful decision. Brought me to tears trying to make it and that might sound silly but when you have to make a decision for your child that is serious like this. . .  it's hard! It made us realize that this is just the beginning of our difficult decision making for her and it will only get harder as time goes on.

We went home and Austin took work off today to help keep an eye on her. We will call her Neurologist on Monday to talk to her and hopefully get in to see her. So far she is doing fine and acting her happy little self today. We still don't know much about the Infantile Spasms they thought she was having (other than googling about them) but plan to discuss it with her neurologist on Monday.

We had all the nurses and doctors that saw her say how much they loved her and how sweet she was. She was laughing and smiling at two of the nurses and they went to leave and said to Oaklynn, "We'll be right back". Oaklynn's smile went away and the nurse said, "Oh my gosh, she doesn't want me to leave. I can totally tell because her facial expression changed". I said ya, that's how she communicates with us. She tells us what she wants with her eyes and her smile. She responded with, "That is amazing!" I love seeing people react when they realize how she communicates with us. It's clear she wants to get something across and she does the best she can at letting you know how she feels. She is just the sweetest!

I will post again once we find out more.