When we were first told about Rett Syndrome the doctor suggested we start immediately on Speech Therapy, Occupational Therapy, Physical Therapy and Hippotherapy. While the first three were familiar, Hippotherapy was not.
“It’s horseback therapy,” we were told. “For scoliosis,” we were told. “But she doesn’t have scoliosis,” we reminded the doctor. “Not yet,” said he. “And she may never if you get her on a horse”.
Many of the interventions we do are preventative. Since Rett Syndrome is progressive, we don’t really know what symptoms might hit her, so we try to keep her strong in as many areas as we can, so that her body is prepared to fight Rett Syndrome when it needs to. Since scoliosis was a concern, we were going to do what we could to prevent it. We were going to fight back. We put her on a horse. We got her a theratog. We stretched her every day. We were doing everything right.
So, when her pt asked if we noticed a bit of a thoracic shift, I said, “absolutely not,” having no idea what that even was. She took off Maggie’s shirt and traced her back.
“See how she’s holding her right shoulder a little higher?”
“You don’t see that?”
If you’ve been reading this blog, you probably realize that I see things with rose colored glasses for the most part, so even if she had her shoulder to her ear, if that meant she had scoliosis, I would have been blind to it. But, in this case, I really couldn’t see anything.
She assured me it was an issue and we went off to another PT, her orthotist, for a second opinion. She confirmed the initial opinion – Functional Scoliosis.
But we’re doing Hippotherapy. She’s mobile. She does sit-ups.
Jenny and I frantically researched – what is that, how bad can it get, will it turn into the kind of scoliosis that ultimately requires surgery? We found little on it, but were assured by her team that it was addressable and we should be able to fix it. From our understanding, functional scoliosis is muscular whereas structural scoliosis is a curve of the actual spine but does one lead to another? Just in case – go to Children’s Hospital and talk to this one particular doctor there.
That doesn’t sound like nothing.
I don’t like going to see doctors anymore. I used to be a guy who depended on doctors for all my health needs – if something hurt, go to the doctor; you have the sniffles for a few days, go to the doctor. With Maggie, it’s the opposite – is this tragic? No? OK, let me make some burgers. We just have a different perspective on tragedy now.
I wasn’t happy to be going to Children’s to get bad news. It’s already bad news if you’re going there to begin with. I just wanted to get the information so we could learn the treatment techniques.
Though I had to go alone so Jenny could tend to Grayden, it all went smoothly. The doctor reviewed her x-ray and told us all of the interventions we’re doing might help or might not, but if we want to continue with them so we feel like we’re doing something, they can’t hurt. Another reason I don’t like to see doctors anymore – especially ones who aren’t that familiar with Rett – they speak in blanket statements like these without recognizing the individual complexity of Rett Syndrome. We’ve seen each of the interventions work and have stopped the ones that didn’t. Perhaps for a typical kid, a compression vest, for example, doesn’t help, but for Maggie it allows her to calm, to breathe, and to focus.
But then he hit us with the kicker: “you should be happy she does not have scoliosis as her spine is perfectly straight. Your therapists are very good for noticing this extremely minor shift.”
I can’t tell you waht a relief that is to have staved off that for a little while longer. It still might happen, it still could, and likely will, get worse. But for now, we just have to get back up on that horse.