Going to the Dentist Is No Minor Affair for My Daughter With Rett Syndrome |Rett Syndrome News

I have terrible memories of going to the dentist as a child: tightly closed eyes, the sound of drilling and suctioning, the removal of whatever was between my teeth, large needles going into my jaw. I hated it when my dentist asked me questions while my mouth was pried open. Today, my kids have no idea how much I used to fear the dentist when I was a child.

My 11-year-old daughter, Ryan, has it easy. She brushes and flosses her teeth, which structurally are fine. Every six months, she gets her teeth cleaned, a process that takes about 30 minutes. She watches a TV mounted on the ceiling as the dental hygienist works. Then, she hops out of the chair when she is done and picks out a prize.

Meanwhile, my teenager, Cammy, receives the same treatment, but due to Rett syndrome, she goes every three months for a cleaning and a checkup. Cammy is unable to use her hands, so her oral care falls on her dad and me. She has no control over her body and can’t open her mouth on command, so we have to use a three-pronged toothbrush to brush whatever we can. She can’t rinse out her mouth, either, so we wipe any residue away with a paper towel, hoping we aren’t bitten in the process. It’s impossible to floss her teeth.

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Because grinding teeth is a characteristic of Rett syndrome, Cammy whittled down all of her baby teeth. There was no way to prevent this. When she lost her teeth, if they didn’t fall out of her mouth, she would swallow them. We only knew she had lost a tooth because blood would be dripping out of her mouth.

Of all of her lost baby teeth, we managed to recover only four for the tooth fairy — and two of them were because she had to get them pulled, which was another major procedure. For that, she had to go to the hospital and be put under anesthesia. My neurotypical daughter will never have to experience that.

When Cammy goes to the dentist, she remains in her wheelchair and is tilted all the way back. The hygienist stands, sits, and moves all around to get into Cammy’s mouth. She patiently waits until I pry Cammy’s mouth open and sneaks in a little bit of cleaning. Another hygienist is on standby with suction, because Cammy is at risk of choking. They clean however long Cammy will tolerate it and floss any teeth she’ll let them get at. Throughout all of this, they continue telling Cammy what an awesome job she’s doing.

At the end of the process, Cammy is exhausted. Ryan picks out a cute stuffed animal prize for her brave sister on the way out. Cammy gives me the side eye as I make the next routine appointments: Ryan in six months and Cammy in three months.

My kids’ experiences are so different from mine from 30 years ago. While going to the dentist nowadays isn’t as daunting as it used to be, my two daughters still have drastically different experiences.


Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Rett syndrome.

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