Rett Syndrome, a Few Years Later

Campbell - my angel.

This is a follow up to a post I wrote a few months after Campbell's initial diagnosis.

Rett Syndrome hasn't taken the joy out of Campbell's life. She's a beautiful 5 year old who can get almost anybody to do what she wants with a smile.

Preschool

I dreaded this day. Her first day of school. I was scared of how the other children would treat her. I was scared of how the teachers would treat her. It's bad enough that a lot of doctors didn't know much, if anything, about Rett Syndrome, and I knew the teachers didn't know what to expect.

Campbell on her first day of school. She seemed to be telling me she'd be fine. 

She seemed eager to get inter a new situation. I realized how much I'd been wanting to shield her from the rest of the world, but she needed to be a kid. I had to laugh a little, she looked at me and reassured me that she'd be ok.

She was right. She's got such a wonderful smile, the other kids would wind up giving her all of the toys there, one at a time, over the day, just to see who got the biggest smile. This continued. Apparently, children have to be taught to treat other kids differently; none of them thought of her as any less than themselves.

She keeps engaged, and can enjoy the activities the other children enjoy - she just needs help with the motor skills.


For quite a while, I was happy that Campbell didn't show any signs of seizures, which is a huge concert with Rett Syndrome. She started having seizures, though, and seemed to have them in spurts. It's absolutely maddening to have to watch your child go through that.

She's been in the hospital a few times, as they have gotten too frequent on several occasions. She is completely exhausted, and sometimes couldn't rest more than 30 seconds between seizures. They would give her medicine, which was quite sedating(though I couldn't imagine her not needed the rest), and eventually stabilized her.

One of her hospital visits.

At home, she's on anti seizure medicines, which have helped a lot, but have also made her very much more tired. She is a bit more quiet more often, but she still manages to be one of the happiest girls I know. She naps more frequently, but "recharges her batteries" quickly.

As of yet, she's still non-ambulatory, but makes strides in therapy. Doctors have said there's no reason for her not to walk eventually, and it's the best for her prognosis, and fending of scoliosis, another common complication with Rett girls.

Medical news is very positive. Despite the relative rarity of Rett, more and more potential treatments are being developed. I can't stress this enough:

Treatment of Rett Syndrome can lead to effective treatment of Epilepsy, Parkinson's, Autism, Alzheimer's and many more. It is considered the "Rosetta Stone of neurological conditions".

For all the fear I've had, and still have, that Rett will keep Campbell from enjoying life, she's amazingly positive. She's still almost always outwardly happy right up until the point she needs something, and needs it quite a bit.

She's also still a fan of daddy making faces, and tickle-time.