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 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.
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.
I will post again once we find out more.