Congenital Bilateral Perisylvian Syndrome

Made by Annapurna Digital

The Start of CBPS Seizures?

max-smiling

At the beginning of the year Max had a very bad bloody nose.  He actually has them a lot, but with the dry weather we have up here in the Rockies, almost everyone gets bloody noses.  It was nothing new, but there was a lot of blood… even I had a hard time helping out.

I was trying to get Max to hold his nose with napkins as I cleaned up the mess and as I looked up at him he suddenly went ghost white and began to fall to the floor.  It looked like he passed out… maybe because of all of the blood?  I caught him before he landed on the ground and held him as I called his name.  I was terrified, but he just laid in my arms staring off into space.  A short time later (literally a few seconds or minutes), he finally regained focus and stared into my eyes.  He began to cry, but I think it was because he was scared – he had no idea why he was on the floor, why I was holding him or what was going on.  I held him and rocked him telling him it was okay, that it was probably just all of the blood, and that people sometimes faint during situations like that.

I was worried, but didn’t think much more about it.

About 2 months later, he was on the couch and again, he went ghost white and fainted (or so I thought).  The entire ordeal was short (again) and just as scary.  This time, I didn’t think it was the blood anymore, I thought it was hypoglycemia.  You see, my mother and I both have hypoglycemia and when we don’t eat right, we get fainting spells too.  However, the difference is that we can feel it coming on – we start to shake and get very, very weak.  We can typically drink a full glass of milk and some lunch meat or beef jerky to perk back up, so that’s what I gave Max.  It seemed to work; he told me he was feeling better afterwards, so we began to take hypoglycemia precautions, i.e. eat a good breakfast, lunch and dinner, and have protein snacks throughout the day.

In the next 4 months, Max ended up having 2 more fainting spells at school.  One I knew about, and again told the teacher to make sure he had his protein snacks, and his teacher was diligent about this from then on; in fact, he called me when Parker said he wasn’t hungry and didn’t want the snack.  But the second time he fainted, Max hid it, even from me.

When Max was a baby, I knew he had a disability, but I was terrified to go to Children’s Hospital and find out.  We ended up going in of course, but it’s hard to convince yourself that there’s something wrong with your child… you may know in the back of your mind that something is different, but it’s hard to admit it.

Now I know it’s not hypoglycemia… but do I really want to know what it is?

A few weeks ago we were getting ready for Halloween and Max was getting a prosthetic scar put on his neck to match his Zombie Hunter costume.  It was viscous looking, but hey, that’s what boys like!  As his Dad worked to put the scar on his neck, he asked Max to lift his head a bit and Max began to fall back.  I was there this time too and caught him before he landed on the floor.  Again, he stared off into space, ghost white and totally limp.  This was the first time that Dad had seen this and White-Bread was there to see it, too.  Everyone was shaken by it, but no one more than Max.  When he woke up and saw all of us around him with worried faces…  well, this time he cried much harder than before.  It seemed worse; not that it lasted longer, just that it shook him up more than it did in the past.

This was my “Wake-up, it’s not hypoglycemia” moment.  I still didn’t want to admit it, but I called the pediatrician and scheduled an appointment for the upcoming Friday.  I told the person that answered the phone that I wanted to get him tested for hypoglycemia, but it may be something else so I needed to meet with the pediatrician, not the nurse or physician’s assistant (not that I’ve ever had issues with that, but in our small town, you usually see the nurse or physician’s assistant because the pediatrician is based in the city and only works out of our local office a couple of days a week).

Friday came and we packed up for Max’s doctor appointment.

I had told Max in the past that there was a chance that he could get seizures between the ages of 10-12 because of Congenital Bilateral Perisylvian Syndrome (CBPS), but we were hopeful that it wouldn’t happen, so we didn’t have a thorough conversation about it.  I didn’t really prepare Max for this visit – I know, shame on me, but I was still hoping they’d say we were crazy and he was just fainting for some other reason that didn’t have to do with his brain (but he did know we were going in because he was fainting).

As we sat down in the doctor’s office (White-Bread was with us) the boys played with the toys and read books and I think my anxiety level was growing, but I controlled it in front of them.  Ugh, this is the moment when you want someone else there with you, but Dad was working and so was everyone else – on a last-minute scheduled appointment on a Friday. 

Dr. Gablehouse entered the room and said her hellos to the boys and interacted with them for a bit before turning her attention to me.  She asked me what was going on and I began to tell her the stories of Max’s fainting spells.  I tried my best to explain every detail and she asked me additional questions as I explained.  At the end I said, “And that’s why I want to get him tested for hypoglycemia.”  She quietly responded, “It’s not hypoglycemia;” I started to cry.  I couldn’t hold it back, but I tried, for the boys’ sake.

It was real now.  I knew what it was.

She wanted us to go down to Denver to get an ECG from Children’s Hospital to make sure it wasn’t his heart.  The next step would be to return to Neurology to get another brain scan.  When I heard the word heart, it was all I could do to hold it in.  Don’t get me wrong, seizures because of the brain are bad, but they can be controlled with medication, but the heart… that means heart surgery, right?  I had so many questions in my head, but Dr. Gablehouse said she wanted to get on the phone with Children’s Hospital to see when she could get us an appointment.

After she left the room, Max looked at me puzzled.  He heard the same thing I did, but he needed clarification.  He needed to know what this meant.  Heck, I didn’t know what this meant, but I had to be Mom and do my best to explain.  I told him that we had to get his heart checked to make sure that his fainting spells weren’t because of his heart.  That it was just a precaution –no need to panic – but as his eyes filled with tears, so did mine.  I held him tight as he cried in my arms.  White-bread began to get scared too and came over to be held.  As I held them both, I told them that we don’t need to get worked up, we’ll find out what’s going on and let’s say a prayer to God.  Max then asked me, “What does it mean if it’s not my heart?”  I told him that we would then go visit the Neurologist again, Dr. Collins, and she would help us find out what was going on.

I knew what was really on his mind, even though he didn’t say it, I could see it in his eyes.  Not only was this information overload, but why would there be MORE wrong?  He already had a hard time communicating, but now he has to deal with seizures?  He’s in 6th grade, starting to get active with school, with friends, etc. and to have yet another thing to hold him back… it was just a lot to take in.  I knew he was thinking this, and did the only thing I could, “It’s going to be okay baby.  God will protect us.  I’ll write everyone I know and get them to start praying right now.”  This was his comfort.

Dr. Gablehouse came back into the room, and by chance, there was a cancellation at Children’s Hospital and we could get in by 1pm that day.  It was a 2 hour drive for us, and we had 3 hours before the appointment.  I tried calling Dad, but he was in meetings and his phone was off.   I called my Mother and told her the news, and luckily, she was getting off work then and was able to make the journey down to Denver with us.  I called my Mother-in-Law to see if she’d take White-Bread (he didn’t want to make the drive down to Denver, and he was already overwhelmed by everything), and of course she said yes.   After I got off the phone, I posted on Facebook what was going on with Max and asked for prayers… and all of our amazing friends and family began to send in their prayers and condolences.

We then went to meet with my Mother-in-Law, and she laid her hands on Max and did a prayer for him too.  He began to cry again, and so did I, but when she told him that she was going to spread his prayer circle, that made him smile.  She took White-Bread, and then we went to pick up my Mother.  When she climbed into the truck she noticed that Max was sad too and I told her that prayers are helping him right now, and she held his hands and did a prayer for him; he smiled after they said Amen.

The 2-hour drive to Denver went fairly fast, and my Mother did an awesome job of keeping our minds off of what was about to happen.  When we finally arrived at Children’s Hospital, we all had a big sigh, and walked in.  I don’t remember anymore tears being shed as we met with the doctor, got the ECG and waited for results.  When the doctor finally returned, I think we all held our breath, but the final result was that his heart was (is) fine – he has a perfectly healthy heart!

Yay, to healthy hearts!

Now we have one appointment down, but we still need to go see Dr. Collins.  Unfortunately, the next available appointment isn’t until February.  We’re on a waiting list in case someone cancels, but for now, we wait.  It does scare me though, because the timing of Max’s “fainting” spells seem to happen every 2-months, which means that he’ll probably have another one before February.

Dr. Gablehouse told us to take seizure precautions like no taking baths, no locking doors, no walking alone and no climbing up high (including his bunk bed and up stairs), until we know what’s going on.  Max was fine with these changes, he takes showers anyways, and isn’t usually alone because of his speech, but moving to the lower bed was definitely a bummer.

So, what research have I done?

One word of advice for parents that find out something is wrong with their kid, don’t do research about it online, you’ll scare yourself.  But I know this won’t stop you… it didn’t stop me.

One word of advice to doctors, if you could provide us with more information when we’re sitting face to face, that would be awesome.  Our heads are spinning when we’re sitting in front of you, and all we’re going to do is go home and start researching the Internet and finding things we don’t want to find.

With that said, what did I find?  Well, I found what’s called Atonic and Tonic Seizures (and here, http://www.epilepsy.com/epilepsy/firstaid_atonic), which pretty much explains what Max is going through.  I’m not trying to be scared by this, I want to meet with the doctors and them to tell me I’m wrong, but Atonic/Tonic Seizures pretty much explain what’s going on.

The funny thing is (well, maybe not funny) that you don’t realize how many people joke about seizures and “wearing helmets” until you are put in a situation where you know someone who may be going through that exact thing.  I’m so keen on this during conversations now.  I’ve heard, “Oh, look at this, it’ll give you a seizure,” or “Oh, you’re funny, you need a helmet.”  I don’t say anything when I hear these comments, but I am aware of them now.

I suppose this may be our new life, Max’s new life and we’ll all deal with it together – as a family.

6 Comments

  1. Cynthia Nettles Guzman

    December 28, 2012 at 11:50 pm

    My son has Perisylvian and we just learned that he has been having seizures…he has overcome so much in his short little life and is doing so much better than they ever expected…so being old this just broke my heart and made me angry too. I just kept thinking, really?…doesn’t he have enough to deal with, more than enough to overcome?..do we really have to have this too!? Just today he had his first EEG since starting meds…we have to wait for the results…hoping the meds are helping and he is improving. I wish you the best!

  2. @Cynthia, how old is your son?

    I totally understand what your feeling; I felt the same way with Max, and I know he felt that too… how much more can you bring on one person!

    I need to write an update, but we went to see the Neurologist yesterday and she thinks that he’s just having fainting spells. We were super happy to hear that news, but she also said that we need to monitor things because it’s hard to tell with drop seizures. She said that we could go through testing again, but that it would be best to start with fainting spell precautions before putting him on medications.

    I hope your little one is doing good. Please update us on how he’s doing and his progress.

  3. Marlena Johnston

    February 10, 2013 at 8:37 am

    Thanks for your post. My son too has Perisylvian Syndrome. We found out when he was 2 months old after spending weeks in the NICU. I see a lot of similarities in our boys. Roman is 10 years old and I would love to see what other things our children have in common. We live in Liberty MO where are you ladies from? I would love to try to get together and meet other families that are going through the same things as I am. I haven’t found much on the internet about recent case studies for children with CBPS. Thanks for sharing this really helps my Roman to feel that he is not the only one with his condition.

  4. @Marlena, it’s really hard to find anything about CBPS on the Internet, which is why I started this blog – to bring awareness. Unfortunately, when it comes to rare disorders, there aren’t many studies for them because there’s not enough of us to get together to bring awareness and funding for it.

    We live in Hot Sulphur Springs, CO, so not that far from you! We’d love to meet other children and families with CBPS!

    • Marlena Johnston

      February 13, 2013 at 6:20 am

      @Kasy that would be great. Does Max usually do summer school? Mine does not but we are thinking about it for this year. Maybe we can do something in the summer. I would love to just chat with you about Max and his story, how you have worked through issues, and stuff like that. Its nice to finally find some one that has gone through the same thing. Thanks for the blog

      • Nope, Max doesn’t do summer school (not yet anyways). Email me anytime, I’m always available! And I agree, I felt lost until I started this blog and have found so many other parents out there whose children have CBPS as well. It’s good to hear from others!

Join the Discussion