I think I’ll start the first post off in this blog by introducing myself, telling you the purpose of this blog and explain what Congenital Bilateral Perisylvian Syndrome (CBPS) means to our family.
First off, my name is Kasy and I’m the mother to a very handsome and amazing 10-year-old little boy who I’ll call Max in this blog. I write on the web for multiple blogs, work for a top web development company and write a lot of content for clients. My most recent client has me doing research and writing for things that the world tries to avoid – babies that have to have surgery within 72 hours of being born. This is a really tough client to write for, only because you get really close and personal with the subject matter. In fact, we have to personally interview mothers, doctors and midwives that have lived through things, such as twin to twin transfusion syndrome (TTTS). Everyone that’s involved with this project has a personal connection and the marketing team on the client side is very passionate about what they are doing. It truly is an amazing opportunity and an amazing project for everyone involved, including the people who will be using the services of this client. I’m hesitant to say who it is just yet, because the site doesn’t go live until the beginning of 2012. But the research involved with this project and my own story has inspired me start this blog on CBPS.
I’ve done a few interviews already with high-risk pregnancy moms and the one thing that they all seem to have in common is that they wanted to find information on the web from a parent that went through what they went through. They appreciated what they found on WebMD and other such sites, but they really wanted to hear the story from someone who had gone through what they were about to go through. And that’s where my story fits in, because that’s all I wanted too. See, when Max was diagnosed with CBPS, I spent countless hours surfing the Internet looking for parents that were just like me. I wanted to see what it meant for Max’s future and what struggles, if any, other parents had gone through, but the sources were limited. I later found a father that was blogging about the condition at Fighting Monsters with Rubber Swords, and I’m still a very loyal fan to this blog. Schuyler is a year older than Max and is in 5th grade, about to enter middle school – seriously, the dreaded middle school. I can read about the fights and battles that Schuyler and her family go through and semi know what to expect when I get there. I know, it’s not exactly what I can expect, but it is nice to read someone else’s story. It’s nice to read that there are other parents out there going through what I’m going through, and what I may go through later in Max’s life. So, the main reason for this blog is to allow other parents with kids that have CBPS to hear what our story is, to post a blog post if they’d like, and just ask questions when they get a diagnosis of CBPS and have no idea what to do next.
What is CBPS?
CBPS is an extremely rare neurological disorder that is usually present at birth. You may not see signs of it until the child is a bit older, but for our family we definitely noticed it at birth. The syndrome steals the voice of your child, makes it hard for them to eat and sometimes curls their fingers. It basically paralyzes the muscles that are in the throat, mouth and tongue, and the doctors like to tell you that, “it can’t get worse, it can only get better.” This is partially true. Max’s speech has improved since he was little, and he is able to eat a lot better than he did when he was a toddler, but it’s still a tough battle. He speaks like he is deaf, and for the most part, only the people who are close to him understand what he is saying when he verbalizes. He can’t eat hard things, like chips, and any meat that is served to him still has to be cut up, much like you would do for a toddler. But the thing that they don’t mention in that “it can’t get worse” part is that the majority of CBPS kids have seizures before the age of 12. Max is 10, and we’ve had sleep studies and EEG’s, and only mild activity has been seen, so far, so good for us.
CBPS is an extremely rare disorder that has only been found in about 40 US patients (according to raredisorders.org), since 1990. There is no cure for it, and doctors have not found what causes it. Children with the syndrome often drool, have tight muscles in their fingers and usually learn sign language or use a talker (augmentative communication device) to communicate with the rest of the world.
The good news? Not all CBPS kids have difficulties learning. In fact, Max has some of the highest scores in math, in the state of Colorado. He avoids his talker like the plaque, only talks to his family in sign language, but has no problem (attempting to) communicate with his classmates. His grades are good, we aren’t in Special ED and he is a very passionate little boy. He is just like every other little boy, accept he was robbed of his voice. I know, we think that all of our children are unique and try to teach them NOT to be like everyone else, but for a disabled kid, that’s all they want. So, yes, he’s unique, but when it comes to fitting in with the guys, he’s right there.
I hope to continue to give you as much information as I can on CBPS and what it means to our family, as well as, answering any questions you may have along the way. We hope that this blog will help families out there looking for information on CBPS and what an actual parent is going through with such a rare disorder.
And of course, Max and I hope you enjoy reading the blog.