Some days are REALLY hard

Last Thursday (September 13th) I put Oaklynn down for her nap. She fell asleep on her back and slept for about an hour (which is about 30 minutes longer than usual). I all of the sudden heard her SCREAMING her painful scream. I ran into her room and she was still on her back and her body was shaking. I knew this was not a seizure because she was looking right at me. Her arms were out in front of her and she was shaking as if she couldn't control her body. What was so alarming were her eyes. They were staring right at me as wide as I've ever seen them. Oaklynn has a way of speaking with her eyes, and her eyes were clearly screaming fear. I could see by looking at her eyes that she was SCARED. I got really scared and quickly picked her up. She continued to scream and shake. I couldn't calm her down and I noticed that she was sweaty. I held her and started crying because I had no idea what was happening to my little girl. I held her close and stroked her head and told her I was right here and sang to her. She started calming down but was still shaking. She looked up at me and her eyes were still wide and I now not only saw fear, but also saw a worry/confusing look. I tried to quickly wipe my tears as I didn't want her to see me crying. I put a smile on my face and told her I was right there and I wasn't going anywhere until she calmed down. Once she was calm, I put Mickey Mouse Clubhouse (her FAVORITE show) on and walked out of her room. I sat on the couch and started to cry. I couldn't get that look of the fear in her eyes out of my head.

I got right on Facebook and posted a message to my Rett Syndrome family group page describing what I just went through and asking them what it was. Right away I got many responses telling me that she was having "Night Terrors". Apparently these are very common in girls with Rett Syndrome.

Wikipedia defines A Night Terror as:

"A night terror, also known as a sleep terror, is a parasomnia disorder, causing feelings of terror or dread, and typically occurring in the first few hours of sleep during stage 3 or 4 of non-rapid eye movement. However, they can also occur during daytime naps. Night terrors should not be confused with nightmares, which are bad dreams that cause feelings of horror or fear. While nightmares are relatively common during childhood, night terrors occur less frequently. Children who have night terrors are usually described as 'bolting upright' with their eyes wide open and a look of fear and panic on their face, and they will often scream. Further, they will usually sweat, exhibit rapid respiration, and have a rapid heart rate. Some individuals are likely to have even more elaborate motor activity, such as thrashing of limbs. Although it seems like children are awake during a night terror, they will appear confused, be inconsolable and/or unresponsive toward attempts to communicate with them, and may not recognize others familiar to them. An estimated 1-6 % of children experience night terrors."

I then agreed that a night terror was exactly what Oaklynn experienced! I have read in different places that you should just leave them alone when this happens because just like a sleepwalker, you shouldn't try to wake them when it happens.

Today (September 17th) I was sitting on the couch around 3pm breastfeeding my baby and all of the sudden I heard Oaklynn scream. It was the same scream I heard the other day and I immediately knew she was experiencing a night terror. I quickly put the baby on her bedroom floor, grabbed my phone and ran into Oaklynn's room. I video taped a little bit of it for others to see what I experienced the first time around. The second time around wasn't as bad as the first. Her eyes aren't as wide as the first and it didn't last as long, but it is clearly a night terror...

I just held her hand and rubber her arms to console and comfort her but didn't try to wake her up. This one only lasted a few minutes and she wasn't as confused afterwards.

So this is just something else to add to the list of things that girls with Rett Syndrome have to go through. The rest of the day was horrible. She was in a bad mood and she would calm her down for a few minutes and then she would just start screaming again. Needless to say, when daddy got home I turned her over to him and broke down in tears. It's so hard when she just screams. I don't know how to console her. If she could indicate that her finger hurt or her head or that she was gassy, I could try to console her by icing her finger or helping her push the gas out. But when your child cant talk or indicate what is wrong . . . well . . . some days are just REALLY hard.

* * * I HATE NIGHT TERRORS * * *