Sunday, August 19, 2012

Screaming spells

Random screaming spells are a part of Rett syndrome. Oaklynn has started these just a couple weeks ago and they are getting worse. They are now happening about once a day and each one lasts a different amount of time. Today was the worst so far...

Austin got Oaklynn up from her nap and she sat with us on the couch and hung out. I got up to do something and next thing I know, she starts fussing and then starts screaming. I put her in her crib to try and calm down (sometimes being alone in her room can calm her down) and while she was in there I put a meal together for her in case that didn't work. When I was done putting food together for her, she was still screaming. I then got her up and tried to feed her but she just wouldn't stop screaming. She was screaming and crying so hard that she was coughing and choking and having a hard time catching her breath. I took her out of her seat and went to sit on the couch with her. I turned on "Curious George" and about 5 minute into it, she finally started calming down.

Once she was calm for about 2 minutes, I faced her toward me and asked her for a hug... that was a HUGE mistake. She then started screaming again. Not only was she screaming but she then started hitting me and trying to bite me. I went and put her in her bed, layed down on the couch and started crying.

...(This week has been kinda rough. Oaklynn started out with what we thought were allergies on Wednesday and by Thursday we found out it was a cold. Then Thursday night Kynslee started to get sick. Friday morning Oaklynn developed a cough and Kynslee had a fever of 102.4. Both noses are running like crazy and neither girls could breath very well. Having both of them sick has been really rough because Oaklynn gets upset when she is sick if I let Kynslee cry. But if I hold Kynslee all day, I can't get anything done for Oaklynn (feed her, change her, clean up...). So needless to say, I was already broken down at this point)...

I gave myself 5 minutes to cry and un wind. After the 5 minutes I pulled myself back together and got Oaklynn back up (she was still screaming). I just held her with "Curious George" playing until she started to calm down again. This time I left her alone for about 20  minutes and after that, I was able to put her down to watch it by herself so I could get things done.

She was literally screaming for over an hour straight (minus the 2 minutes she calmed down for). It's not just a cry, it is an ear piercing scream that sounds like a limb just got torn off. After talking to other Rett moms, I learned that this is common in the regression stage of rett syndrome (which she is in). They all reassure me that it will go away and it wont last forever.

I am learning ways to keep calm so that I can continue to do this as these screaming spells continue (such as putting her in her room and giving myself a few minutes to be alone). It's hard to admit that she is in her regression stage but there is no hiding from it now. It's here and the only thing we can do is fight through it until we get to the next stage of Rett syndrome.

3 comments:

Sarah and David said...

Oh my goodness! You all hang in there - you're amazing Whitney!

Kyle-Michelle-Kaylie said...

you are a great mom, that would be so hard as a mom to hear your baby cry like that and theres nothing you can do! and then to have a sick infant crying too...can't imagine! you are really a great example of love!

Boley Boys said...

I'm crying with you. Oh, Whitney. I admire you so much. Thank you for sharing your challenges and triumphs. You are an angel mother!