CCHS and AUTISM

If you’re a regular to this blog, you surely remember me constantly talking about Wyatt’s episodes - holding his breath, turning blue, passing out, and needing resuscitation. How can anyone forget that daily drama, right? (If you’re new to this blog, feel free to click on any of my older posts and you’re sure to get a glimpse into that fun experience.)

Well, over the first 4 years of his life, we tried absolutely everything to get to the bottom of these strange and life threatening daily respiratory arrest incidences, a.k.a. his “episodes”, without any success. First we were told to put him on daily sedation meds and wait it out till he’s older. That suggestion never sat right with us. How is he supposed to cope better with the world around him if he’s not with it mentally? As time went on we actually learned that any medication that causes drowsiness also caused more breath holding episodes. (That should have been our first clue to the real cause…) Then we were advised to blow in his face to have him take another breath; that made each breath holding event last even longer and caused back to back episodes. Then we were told to Ambu bag him through them so he can’t clamp down his airway so much; that also didn’t work and much to the ICU Doctor’s surprise, Wyatt managed to even pop the Ambu bag. When the medical experts ran out of suggestions, it suddenly had to be a failure in our parenting response to this presumably attention getting behavior. You can guess how well we took to that explanation… Well, we gave all those suggestions a try and nothing worked. In a strange way, running out of possible explanations was a gift because it allowed us to, reluctantly I might add, accept the situation for what it was and stop trying to fix something that couldn’t be fixed. When we were able to take a step back and look at it more from Wyatt’s perspective, we realized most episodes occurred either because he was overwhelmed or because he was frustrated not being able to communicate. Lack of communication, now that’s something we could work with. Knowing he is developmentally delayed, can’t tolerate much interaction with other people (clue #2…) and has a trach, we dove into learning and teaching him sign language. (I will explain that choice and the obstacles that came with it in another post.) It worked almost instantly. While it took him over a year to start signing back to us, he was instantly fascinated by it, started making eye contact, reading facial expressions, generally calming down quite a bit, and at 3 ½ years old finally gave us his first voluntary hug! What we didn’t know at the time was that this change in behavior that we just witnessed was nothing short of amazing. While trying to find yet another behavior specialist to help us with these decreasing yet still daily episodes, we finally found the missing puzzle piece that would make sense of all our struggles. An in-depth evaluation about a year ago revealed that Wyatt is autistic! The Autism Spectrum is great and from what we can tell so far at his young age he seems to be high functioning. And while it certainly is not a diagnosis anyone wants, it honestly came as a relief. For 4 years, day and night, we had been resuscitating him, not knowing if we’ll be able to bring him back around each and every time or what kind of brain damage each episode would cause. Wyatt having Autism suddenly explained his daily episodes and why none of the previous intervention strategies worked. It was never about him just being a brat and trying to get someone’s attention. It was simply a matter of the outside world being too overwhelming for him so when he cried, or threw a tantrum as most Doctor’s called it, it turned from an Autistic behavior into CCHS at its worst. Just to clarify, there are plenty of healthy kids who hold their breaths and pass out for behavioral reasons when they’re little. Their bodies will automatically take over breathing again when they lose consciousness. With CCHS that is not the case though, that autonomic function is malfunctioning. Every breath holding episode for Wyatt in reality is full respiratory arrest, even if we didn’t officially call it that. Getting this additional diagnosis of Autism suddenly was eye opening. Because of Autism, Wyatt gets easily overwhelmed and can’t cope with the stimuli around him, he then starts crying and CCHS complications take over to the point where he exhales all his air, loses consciousness but his brain doesn’t kick start breathing again and manual resuscitation is necessary. Finally, there was our answer. Our instincts were right all along. He wasn’t doing it on purpose and it also wasn’t something that could just be fixed. All we could do, and continue to do, is help him learn to cope with his emotions and teach him to consciously breathe through them.

CCHS is difficult to cope with but you learn to adjust over time. For us, Autism is the biggest struggle on a daily basis because it puts Wyatt at increased medical risk.