At just over two weeks, we had to spent a night at Primary Children's Hospital. It all began at her normal two week check up at the pediatrician's office. A few days before, we noticed that she was twitching pretty badly in her sleep. (It had only happened two times, not every time she slept) So we thought we'd bring it up to the Dr. to see what he thought. At the appointment, she had to get her PKU done, and she was sad so I rocked her to sleep. Right then, she started twitching again when the Dr. came in. I had him look at her. He tried to put pressure on her to get her to calm down, but nothing seemed to work. She continued for 1-2 mins. With her being so small, it worried him. He said he thought it was Myoclonus, but that because she was so young, he recommended and EEG. He just wanted to make sure that it wasn't related to seizures.
After we left the appointment we called to schedule and out patient EEG. However, Primary Children's, due to her being so little, would not let us schedule an appointment. They said her pediatrician had to call the Neurologist and chat about her situation to see if they'd let us do an out patient visit. We got the phone call a few hours later saying that they decided she needed to be checked in, and they had a bed ready at 3:00 PM that day. I seriously went into shock, thinking that they must not be telling me something, that this was worse than I thought. I was super emotional.
When we got to Primary's they hooked her all up. The poor girl, hated being up to all of the machines. She had a very hard time sleeping and getting comfortable. It just wasn't like her. It was sad. They had to unwrap her and check her every four hours. She hated it. There were teams of doctors and residents who came and saw her and with all of the information they were gathering, they suspected that it was Myoclonus. Which, we all were hoping for. But I couldn't help but feel weird to be checked into the hospital for such a mild thing, that she would grow out of. But with all they were saying, they said it's better to know now, then we don't have to worry.
In the morning, we went down for her EEG. That was so sad!! (I didn't have my camera, so I wasn't able to get a picture) If any of you know, they have to glue wires to their head and then tape it on after that, and then wrap it up, on top of that! She luckily slept through the whole thing, and Neil was there with me, thank goodness! The WORST part was when they had to rip the wires off of her head!! It was AWFUL! The poor girl was screaming and screaming. That image will forever be in my head.
Afterwards, the nurse was kind enough to give her a nice warm bath. They put dish soap on their head because they say that's the best way to get the glue off. She loved her bath! Now came the wait time. We just now had to wait to see what the EEG had found out. We were waiting on the Neurology team. Hours later they came in and thank goodness it was great news!
Mya had Benign Neonatal Sleep Myoclonus. This is just like when you fall asleep and you jump or twitch, we've all done it before! But her nervous system is still developing and it is something that she'll grow out of. We were so grateful to hear the news. Although it was an expensive trip and a very stressful one, we're glad to know that our sweet Mya is doing great and her brain waves show no signs of seizure activity.
