Monday, October 8, 2012

A Rory Update

It's Monday. It's cold and rainy in the forest. We're taking a field trip to Wal-Mart. Ink cartridge, paper towels, blank cds, a new book for each kid and a treat for mom. Good enough.

No news on Rosie yet. Our appointment was...unsatisfactory. The doctor was very nice and very good with kids. I'm sure she's wonderful at her job but unfortunately she had little interest in the hairball issue and was more concerned with Rory's constipation. She read the xray report from our local hospital off the paper to us  and then said if it was her kid, she'd take that report as no hairball and be done with it.

Umm...did she read the same report I heard? It said no less than five times that the patient, a THREE YEAR OLD, was not cooperative and didn't drink an adequate amount of barium.

That's kinda why we drove 3 that she could have tests administered by people who work with kids all the time. People with the skills to help a 3 year old through scary tests. The radiologists at the hospital here were very good at their jobs but they don't do peds patients regularly...or like ever. This was the first barium xrays the one tech had ever done on a kid.

So frustrating. I called our pediatrician from the parking lot in tears. I was so tired and worn out, I couldn't help it. Well our pediatrician (Jan) got on the phone with Children's Hospital and raised royal heck. Needless to say, we now have an abdominal CT scan scheduled for Thursday and that will definitively tell us yes or no to a hairball.

What a mess.

Rory hasn't pulled her hair or doll hair in over a week now! Dave had the magic idea, promising her an American Girl doll. Some people can't believe we'd spend $100 on a single doll. I'd pay $1000 if it means my daughter stops pulling her hair. This last week has been the longest, most stressful week of my life. I'll avoid this at all costs.

That being said.

Trichotillomania is no joke. It's a real disorder. It's nothing to be embarrassed about. Rory has little control over doing it at times. It happens as a compulsion. It is the same as kids who wet the bed later in childhood, suck their thumbs obsessively or have chronic nightmares. It's not something she chooses to do. It's something we had to learn to call her attention to when it was happening and learn her "high risk" times for pulling. For Rory, that was (is) when she is tired, nervous or bored. She is very intelligent and if she isn't being intellectually stimulated, she pulls her hair in frustration and boredom.

Trich is complicated. It's something that Rory could be past entirely now or it could flare up in a few months, years or even when she is an adult. We will work with her on monitoring her triggers, learning to handle stress/anxiety/being tired in a better way than pulling her hair. Thankfully, she is only 3 and we have a long time to work with all of this before she is an adult. Trich is often associated with anxiety disorders, OCD and a host of other emotional issues. (And yeah, Rory gets a double dose of it because I am diagnosed with anxiety and depression.) But you know what? My girl is so fearfully and wonderfully made that I'm not worried about it. We'll take each trich filled day as it comes and we'll work with it, deal with it and put it behind us. Just like Trace's acid reflux, we'll handle it.


Laura said...

I would have been crying in the parking lot too.

Praying that you get much better assistance this Thursday and results.

Jana Faith said...

You have my sympathies. I've read about trich and watched a youtuber's videos about trich. It seems like a very difficult compulsion to break. I pray God will help you find the right doctors to help you deal with this.