When Rett Symptoms Change
My 12-year-old daughter, Cammy, has Rett syndrome. Some days, Rett syndrome has Cammy.
During the early-onset stage, which typically occurs between 6 and 18 months of age, children may experience abnormal hand movements, difficulty sitting independently, and speech or language problems. Cammy was no different.
Repetitive hand movement is a hallmark sign of Rett, and Cammy had been hand mouthing from 12 months on. Her left hand was constantly in her mouth, causing sores. Other kids with Rett may wring their hands or pull out their hair. At 18 months, it was this behavior that tipped off Cammy’s physiatrist to the fact that she had Rett syndrome.
Shortly after Cammy was diagnosed, her sister, Ryan, was born. Their two-year age gap began closing within a couple months when Ryan showed evidence of already being stronger than Cammy.
When Cammy was 2 1/2 years old and Ryan was 7 months, we did a professional photo shoot with my parents. I thought if anyone could get Cammy to smile, it would be my mom.
Photo shoots with any children are difficult. Photo shoots with a child with special needs are especially tricky. The visions you have in your head never come true. You want the perfect photo so badly, but end up crying because it’s a nightmare. Kids don’t pose or smile on command.
I dressed my daughters in madras print to surprise my husband, because it’s his favorite. Cammy wore arm splints to prevent hand mouthing. She had white ones to blend in with her outfit.
All day, Cammy was irritable. The usual tricks weren’t making her smile. My mom couldn’t get a smirk. My dad couldn’t get a grin. Finally, it somehow happened by accident. Ryan crawled over to reach for Cammy and knocked her over. Due to her hypotonia, Cammy fell over but burst into laughter. Ryan looked away, unsure what to do, wondering what had just happened or if she was in trouble.
Near the end, I asked the photographer to take some photos of Cammy without the arm splints on, knowing I would use them in the future for Rett syndrome awareness. My mom had me walk away to take the pressure off Cammy, so I had no idea if she was tolerating the additional photos.
I put her arm splints back on, said goodbye to my parents, and headed home. Cammy moaned incessantly during the hour-long car ride as tears flowed down my face and a headache settled in. When we got home, I took off her arm splints and laid her down to watch TV in an effort to calm her. She immediately stopped crabbing.
A few hours later, I noticed that her hands had not been in her mouth once since I took off the splints. She was wringing her hands instead. Her stereotypy had changed.
Cammy had been so frustrated all day, and I couldn’t figure out what was wrong because she couldn’t tell me what Rett was doing to her.
Rett syndrome had Cammy that day. Sometimes this means a change is coming. Sometimes it’s just a bad day. Regardless, when Cammy exhibits these distressing behaviors, we keep her comfortable and let her know we are here for her. I don’t like it, but I just have to wait until Rett syndrome loosens its grip on my sweet girl.
Read more about Cammy’s story at our blog, “Cammy Can Reverse Rett.”
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.