Congenital Bilateral Perisylvian Syndrome

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Inspired To Write About Congenital Bilateral Perisylvian Syndrome

Sign Language I Love You

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.

18 Comments

  1. Thank you for your post. My son who is 16 months also has CBPS. It’s hard for me to express everything that I’m feeling. I really appreciate hearing other families stories, and knowing that we’re not all alone. It also give me hope that Max is doing well. As you probably remember, it’s really scary to have a toddler that isn’t doing much and wonder if things will ever get better. Thanks again. I look forward to reading more of your posts in the future.

  2. I’ve been all over the internet looking for some kind of support group for CBPS, and was thinking about maybe starting my own, then I found this site. Thank You!! It’s nice to know we’re not alone. My 5 year old daughter was diagnosed with CBPS 6 months ago after having an MRI. It’s been a long road, but we’re very greatful to finally have an answer. I look forward to reading more of your blogs & possibly learn more about this very rare disorder.

  3. Thank you both for your comments, it’s great to read that this blog is helping other people. I too was in your place – scouring the Internet trying to find something, anything that could help me learn more about this condition, but as you may know, it’s limited.

    I started this blog for you and for other parents to have a place to learn. Feel free to share a post if you’d like or ask any questions. You can find me on Facebook at http://www.facebook.com/kasy.allen or email me at kasy.allen[at]gmail[dot]com.

  4. Thank you for doing this. I am just beginning my search for support contacts for my son. After 20 yars of “nonspecific” test results we finally have a diagnoses, all thanks to a wonderful doctor who was determined to look at everything and finally simply started over with the MRI. He does have learning disabiliies,along with all the other challanges. At least now we can finally put a name to his condition. This is so important in opening doors for his future and obtaining support services as an adult.

  5. I agree Alychia. Nothing changed when we found out Max had CBPS instead of Cerebral Palsy, but it made us feel better that we knew exactly what he had. And we felt it was important to build a community for the parents of children with CBPS so that we could all learn together. In fact, the more I write on this blog and the more readers like you leave comments, I’m slowly learning that there are a lot of parents out there that are just like us.

    Thanks for sharing.

  6. Julie Schultz

    July 16, 2013 at 9:09 am

    I have an 11 year old son and a 5 year old daughter…. both have CBPS.

  7. @Julie, that’s really interesting that you have two kiddos with CBPS, especially since we’ve all been told it’s so rare… beginning to think that it’s not as rare as the doctors say it is!

    I saw that you just joined the Facebook group, and I hope you learn a lot more about CBPS there from the other parents – we almost have 40 parents! Reach out to Brian Weisberg, he also has two little ones with CBPS. The interesting thing is that his babies are triplets (one girl and two boys), and only the boys have CBPS… really interesting story!

  8. Hi, my 2year old who is an identical twin was yesterday diagnosed with this syndrome. He was born at 28 weeks from a pregnancy complicated by twin to twin transfusion syndrome and had a difficult time in NNU. We assumed his difficulties were CP due to his prematurity but MRI has confirmed CBPS. His twin is fine. We are awaiting input from a geneticist. It makes sense now as he has horrendous difficulties eating. I am curious as to whether it is the TTTS that may have caused the changes. Interesting to read others experiences.

  9. I’m not sure if it was because of TTTS or not, but what I can say was that I know I miscarried Max’s twin when I was around 6 weeks pregnant. I thought it was the baby altogether, but the doctor checked and I was still pregnant – that was Max! So it’d be interesting to see if anyone shared in this experience.

  10. That is interesting. I have found some research relating it to TTTS when there has been death of a co twin due to the haemodynamic changes that take place when this happens. I however have both my boys despite the odds due to fetoscopic laser ablation at 23 weeks. I did have a bleed at 9 weeks though, maybe this was significant? The neurologist believes the changes to the brain cells if this condition has been acquired would have been made in the first or early second trimester. The chances of it being genetic would be unusual due to his twin being unaffected. So many questions!

  11. I Just found out my son who just turned three has this. I had a bleed when I was 7 weeks pregnant. It went away and we thought everything was fine. Then he started having seizures at 3-4 months. You can see him on YouTube under Lethia McNair.

  12. Have you found that it is common for the kids with this had moms who had some bleeding early in pregnancy? I have not heard that before..but I also don’t read much on it. My daughter will be 14 in February. We found out when she was 18 months.

  13. @Michelle, I’m not sure. I’ve heard stories from other parents about early things like this happening and about parents that were pregnant with multiples, but I’m not sure if it’s consistant with every parent. This would be a great question for our Facebook group – have you joined? Just click on the link at the bottom of this site to be brought to it. We have almost 60 parents on the board now, so you’ll definitely get a lot of feedback! It’s private too, which I find comfort in :).

  14. Hi! Our youngest son, Matan, has unilateral perisylvian syndrome. He just turned 4 and was diagnosed when he was a baby. I am thrilled to have found this blog and find great comfort in hearing stories that inspire us for Matan and his future. Having such a rare syndrome is like driving to another state without a map or compass…you just have to trust and figure it out one day at a time.
    Matan was also born with hypoplastic corpus collosum and as of yet we don’t know the extend that will have on his ability to process information.
    He is bright, social, and very happy…all the time. He loves people and dogs and makes friends where ever he goes. Right now we are struggling to decide which path to take for his communication. He had his IEP and they have no idea what his potential is. We have started using ASL but cannot get funded for services because he is not in the deaf and hard of hearing classification. Frustrating.
    All we want is to give him a way to communicate. To express himself.
    We are really looking forward to hearing all of your stories and connecting!

    • Hi – my name is Dan and we, my wife and I, Tara just got the same diagnosis for our son Evan, 20 months, for CBPS last week. We also live in Colorado. Your blog gives us hope, and a sense of community in a time when we are feeling very alone.

      We are dealing with an emotion set that is so unfamiliar to us. We are sad because we fear what the future holds. We cry privately so that we can fake like we are being strong for one another.

      And at the same time are so happy that Evan is a part of our family. We love him so much. He completes us. See, we have a 5 year old daughter Paige too – that other than being a crazy 5 year old – is ‘normal’.

      We have have Evan in therapy x3 a week (OT, PT, Speach), mostly because my wife is a saint, and from what we read there is not much else we can do.

      The million dollar question is…how far will he go? When will his brain impede further progress. Will he ever be able to sustain himself ? What happens after we are gone?

      For now we try to live in the day to day. Enduring looks from other parents at the playground like …why isn’t he walking? But I don’t care. He is my son. God have him to us for a reason. And those answers will come in time.

      Don’t know if you have some suggestions for supper groups locally. But we could use some.

      Thanks for posting.
      Dan

      • Meant support. Plenty of supper out my way. We are not hungry. Quite the opposite really. :)

      • Dan, if you haven’t yet, you should join our Facebook group – click on the Facebook icon at the bottom of the site. There are a lot of parents on there that can help with your questions and with general discussion.

        I understand where you’re coming from. It is a hard pill to swallow, but your little Evan will amaze you – just wait and see!

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