Congenital Bilateral Perisylvian Syndrome

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Being Diagnosed With Congenital Bilateral Perisylvian Syndrome

Back To The Doctor

I always had a sneaking suspension that Max didn’t have Cerebral Palsy.  Mainly because I’ve heard about misdiagnosis with Cerebral Palsy over and over across the Internet, but also because how he is, is so peculiar.

At birth, both of his hands curled.  Yes, newborns usually have their hands curled, but his never relaxed.  It took a good four years of therapy to get all of his fingers to uncurl and for him to have more control over them.  To this day (he’s 10 now) both of his pinkies have a tendency to curl and his left hand is weaker than the right.  He has always had a hard time eating, like I said before, he didn’t eat baby food until he was around 3.  To this day he still has a hard time with crunchy foods, like tortilla chips, and chewy foods like steak (I still cut it up rather small so that he can enjoy it).  And bread is the worst, it just gets stuck in the roof of his mouth and he has to do a finger-sweep to get it out.

Finger-Sweep: When food gets stuck to the roof or sides of your mouth and you have to manually pull it out with your finger.

He still chokes and gags on certain foods when he tries to hurry through meals (yes, we watch what he eats, and someone is always with him when he’s eating, even at school).  He has a hard time sucking through a straw, and has a hard time blowing… it’s more like a huff.  And of course, he has a hard time talking – he talks more like a deaf person.

All of this added up to me wanting to get a second opinion (or is that another opinion after 9 years?).   I was referred from our pediatrician at Peak Pediatric after I expressed my concern, and they sent us to see Dr. Abby Collins at Children’s Hospital.  She’s a neurologist, which I later thought was fate that we even met in the first place.

On the day of our first appointment, we packed up and went to the hospital.  I knew that even if he was re-diagnosed with something else, it wouldn’t change anything.  We probably wouldn’t change anything that we were already doing, but it would be an answer for me and Max.  I could find other parents that were in our situation and reach out to them.  I could start a blog like this and learn about more parents that are in the same situation as us… this was important for us, for me.  Dr. Collins did a few fun tests with Max, like bounce on one leg and touch your nose… fun stuff, not the horrible poke you with a needle type of tests.  Towards the end of her games with Max I noticed a look of surprise on her face; a look of astonishment almost.  It got me excited.  I wanted to know what she was thinking, what is it?  She finally said the words we wanted to hear, “He doesn’t have Cerebral Palsy at all.  In fact, he’s a super star!  We’ll have to run some tests, but I think he has Congenital Bilateral Perisylvian Syndrome (CBPS).”  What? She started explaining to us what CBPS was, and how rare it was.  She mentioned that she heard about it at a conference she was at, and had begun to study it to learn more about it.  She said that her and her colleagues were very much into researching what CBPS was and how to go about helping children with it.

Finally, A Diagnosis That Makes Sense

Over the next few weeks we did an MRI and a sleep study to see if Max was having any seizures, which is found in the majority of CBPS patients.  His MRI confirmed that he had CBPS and the sleep study showed that he was having tiny, almost unrecognizable seizures.

Like I mentioned, this doesn’t change anything as far as what we currently do, like therapies, eating or anything else, but it’s an answer.  I know to look out for seizures now, and that how Max is, will probably be the same when he’s an adult.  I can help build a community around CBPS and hopefully help other parents that are going through, or may go through, what Max is going through.

8 Comments

  1. hello. its so difficult to find any information about bilateral perisylvian microgryia. im glad i found one story. my son is 3 months old. he was diagnosed by an mri around 4wks as he was in the nicu a total of 7wks and they were baffled by why they couldnt get him to bottle feed so they did an mri of the brain and found answers. please email back. i would love to be able to talk to someone who knows where im going. the condition is so rare.

  2. Hi, I live in Australia and have a 12 year old boy who was diagnosed in November after having two seizures with Perisylvian Syndrome. He is on different medications to stabilise his epilepsy. Just thought I would say hi.

  3. @Chey, I emailed you when you originally posted, but wanted to leave my email for anyone else that wants to contact me: kasy.allen[at]gmail[dot]com.

    @Carolyn, we’ve been lucky so far. Max is about to be 12 and no seizures yet (knock on wood). He does have pretty bad hypoglycemia and has been fainting lately because of it. I always thought it was because our family has history of hypoglycemia, but I’m thinking now I need to go get another check-up, just to be sure it’s not seizures. When did your sons seizures start?

  4. Emily and Teddy

    July 10, 2014 at 2:35 pm

    Thank you for sharing. My 2 month old was just diagnosed with this after having hard-to-control seizures since birth and failing his swallow study- finally got a specialist to see his MRI and this is what they found. Thank you for showing us that life can go on… We are still in disbelief and shock about our new baby… Can’t even breathe…

    • I don’t want to say that things get easier, as far as, being the parent in this new role you’re in, but you will learn a lot as time goes on. You’ll learn to look at the world differently, and how much your child can give to the world, even with his/her disability. I wish you the best in the future, and let me know if you ever need to chat.

  5. Hi, my 12 week old boy was dx with bilateral parisylvian polymicrogyria a few weeks ago. Good to find someone who is experienced with this since so few are! He had seizures since birth… just wish I knew what to expect for his future… oh well.

    • Emily,

      You should join our Facebook group (link at bottom of this site). There are over 100 members now, all of whom have some sort of connection with CBPS/BPP. They can definitely help you learn more about what to expect in the future for your little one. I am one of the moms that has the oldest – mine son is 14 in just a couple of weeks – but there is another boy on there that is 23 and in college! Let me know if you have any questions and I’d love to chat too!

      Kasy

  6. Thank you so much, a family member of mine was recently diagnosed with this, and information is so very hard to find! Will definitely join Facebook group!

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