Anxiety in Rett Syndrome

When you look up Rett Syndrome online, or anywhere else, you will find "anxiety" in amongst the many severe symptoms of the condition. In the past three years I have let that float through my mind as a very vague issue that I didn't really feel we had encountered yet and I wasn't really able to think specifically about what Lucy might become anxious about. In general, I thought she might get anxious in perhaps social situations where she feels like she sticks out due to her differences. Maybe she might feel anxious about going new places, or making friends-the typical things kids and people in general are nervous about. I guess I just thought it might be worse because of everything else that comes with Rett Syndrome. However, over the past month or two, Lucy has clearly told us and shown us two very specific things that have started to make her feel a great deal of anxiety.

First, since her seizures have started, and she has started taking Depakote, her tremulousness has at least doubled, if not tripled in intensity and frequency. Her body shakes, twitches, jerks, and trembles. At times I need to swaddle her like a baby in a big blanket to help her body calm down. Most times though just a small weighted lap pad put over her arms and chest and tummy, or over her legs, and the use of soft arm braces can help her body to be still for a bit. A squeeze and a hug just isn't cutting it most of the time anymore. We tried adjusting one of her other meds to see if it helped decrease the movement, but it didn't, so it's just what she has to live with now. 

This has had a negative effect on both Lucy's ability to eat safely, and her stability during walking practice. When it comes to eating, sometimes I can barely get the food in her mouth, even though I am constantly stabilizing her chin gently with my hand. And when her mouth does manage to open, and she is still enough to let the food in, her mouth has seemed to resort back to not always knowing what to do with that food. Sometimes it just sits in there. But, what is most scary is that all of the excess movement also includes her tongue movements, and that, combined with breath holding has been making Lucy choke much more frequently on her food. When I say "choke" I don't mean we have had to give her the Heimlich yet, but she just coughs, and panics, and turns red. I have to get in there and scoop food out pretty regularly which is a risky endeavor for my fingers. But one night at supper after having such a choking episode, Lucy said with her Tobii: "understand, nervous" and we asked if she meant did we understand that she was nervous about eating and she said nodded "yes". 

A few days later at breakfast after she had choked again Lucy said: 

"Hate, nervous, cry, hate, eat"

So I scaffolded to her food pages and asked her to tell me what foods are easy for her to eat, what foods do not make her nervous, and here is the list she created:

A few notes on her list:

1.) All of those things are her favorites, and foods she tends to be most successful with, except maybe popcorn shrimp. She does love it, but it is not consistently "easy" for her to eat.

2.) "Candy" primarily refers to Reese cups. She LOVES them. 

3.) When she said, "everything, hot"  I just kind of acknowledged what she said and we moved on, but then when she said, "I need some help, food, cold" I knew that what she meant was that foods that are warm or hot are easier for her to eat than things that are too cold. She has never liked things that are too cold. No Popsicles, only ice cream with a hot sauce on it, even yogurt from the fridge is too cold sometimes. So she was stating that cold foods give her trouble, and that has always been 100% true.

4.) I know all her favorite foods and what is easiest for her, and even the "easy" foods are giving her trouble lately, but I wanted her to be able to have some control over the situation by helping to decide what she feels most comfortable eating. 

I like Lucy to try new things and she knows that, but I also told her that I will try even hard [than I already do] to just give her the foods that are easiest for her. So, the vagueness of Rett Syndrome-related anxiety has lessened in that now we know, in no uncertain terms because she told us, that Lucy is nervous about eating. Eating causes daily anxiety for her. 

She hasn't said yet that walking makes her nervous, but it is obvious that it has started to be very difficult for her, due to the tremulousness. Her stability has greatly decreased, as has her enthusiasm for working on walking. She has never been fussy or resistant to practicing standing and walking before, but lately there have been some tears, and a lot of protests on her part. However, on a few occasions she has actually requested to practice walking saying, "I'm telling you something, it's about now, choosing, walking" so we walk. But her anxiety is still present, she is just choosing to try and work through it. I can tell she is afraid she's going to fall, even though I am holding onto her, and the shaking makes the already arduous task of putting one foot in front of another just that much more harrowing. 

When I was little I had some pretty bizarre and irrational fears such as we were going to drown when we flushed the toilets, or the car doors, even if they were locked, were going to fly open while we drove down the road. They were just crazy little kid fears that were not really going to happen. But Lucy has to be afraid of EATING and WALKING, things no one should ever have to worry about. Shouldn't we all just be able to eat and walk without a second thought? Of course we should, but she can't. So now I know two very specific causes for anxiety in people with Rett Syndrome. Now I know.