Mysterious Mysteries

I saw an adorable meme today: 

And I feel that I understand it and some of what it means today, more clearly than I ever have before. And that I have to become incredibly sensitive to the smallest of signs. And sometimes, even none of that works! I still have no idea what's going on!

In the past, even from a very young infant, Cyrus has always been incredibly chill. Almost impossibly so. I have said on more than one occasion that he spoils us with how calm he is. And I have found in the ADSL literature more than once lists symptoms that include "unusually happy". Of course austistic style tantrums are in there too, but we hadn't really experienced that - except that one time when Cyrus was on steroids for a month.

Let's just say a six month old with 'Roid Rage is NOT an experience I would wish on anyone!

But the point is, having a "chill" or "mellow" baby is not always a good thing, because it means they don't always communicate when something is wrong. And over time, we have become amazingly adept at reading the smallest of facial expressions. There's a flash of a wince or a particular grimace that most others mistake as a smile that let us know that he is uncomfortable. There's a particular noise that he makes that is rather distinct, but it's unclear whether it's a happy sound, or an angry sound unless you're looking directly at his face (particularly the eyebrows I think, but I can't really put my finger on it). Perhaps it's just a "Hey! Pay attention to me!" sound!

But having a calm child, also means that when he does cry - it's not to be ignored. That something is absolutely dreadfully wrong. And I swear this child has been crying since mid January! And I feel so lost as to what the problem is and completely inadequate in figuring it out.

Cyrus comforting himself with cuddles

Then there's this face.

We have thought we had it figured out several times.

In January, he was behaving like he was teething - lots of grinding of teeth, shoving his face into the floor, a bit of soft sobs, and lot of angry utterances that I can only describe as exhaling watery hard k's at the back of his throat. Almost like he's hissing like a cat, except with a k instead of an h. But we knew it couldn't be teething anymore because he has finally finished cutting every single one of those awful molars (plus the other ones too). One of his teacher suggested that it might be an ear infection. Since he had no fever, I never would have thought of this.

We took him in! And sure enough - ear infection! It may be silly to be happy to discover that your child has an infection, but there's also a certain relief in understanding what is happening so you can do something about it!

He starts taking antibiotics and I give him some children's ibuprofen and things are better for a few days. We finish the course, and take him in for a follow up and the ear infection has cleared up! So, I stop giving the ibuprofen, and suddenly he's exactly as he was before - grinding and not happy.

And over the next two weeks it only gets worse. For huge chunks of time each day, he will just have a meltdown  - where he's thrashing about on the floor, slamming his hands down onto the ground, and cannot be consoled with cuddles, swinging, or food (Our trampoline birthday party was sadly pretty much a wash). And he won't take a nap even when we try to set him down before the meltdown (not that they are predictable at the moment).

Cyrus mostly winced and needed cuddles at the trampoline park... 

But the ibuprofen still works. Forty minutes after a dose, he'll be calm for hours!

And that kills me because doesn't that mean he's most likely in pain the rest of the time? I know I can't give the painkillers every day indefinitely. That doing so is not good for him in more ways than one. But I have no idea what hurts and he can't tell me, and it seems that arching his head and grinding his teeth are general complaints - not isolated or specific to his actual mouth or face.

At the beginning of February, our IEP team suggested we get Cyrus's ears checked as they hadn't been assessed since he was born. This took awhile to set up, but we did get Cyrus into an audiologist. The doctor had this awesome contraption that determined whether the inner ear was registering/responding to sound. But in one ear - his right ear - he had abnormally high pressure in his middle ear. This makes it difficult to get a reading of hearing ability out of this ear, and we were told that in adults, this condition is incredibly painful.

Ah ha! This explains everything! And is something we can do something about!

So we contact our pediatrician, and quickly get referred to an ENT (Ear Nose Throat Doctor, which is actually supposed to be called an otolaryngologist, but who knows how to spell that - let alone pronounce!)  It is another week or so before we are seen. Cyrus's tantrums, for lack of a better descriptor, have increased both in frequency and severity where at times he is actually crying with actual tears down his face (which again, is a big deal because it never used to happen!)

The ENT takes a look and insists his ear is fine! That if he did, have increased internal pressure, it's gone now. He thinks (listening to Cyrus's grinding) that it's probably a dental issue. We go back to another audiologist just to be sure because this was supposed to be the answer to everything! And yup, the pressure has cleared up completely. At least we now have a clean hearing test that shows both ears work correctly.

So we make our way to a pediatric dentist. Usually, there's a dentist that comes to Cyrus's school, but they weren't going to be there again until late March, so we make an appointment at a local pediatric dentist. And this guy is awesome! If only because he works so well with Cyrus and he removed the medicine induced stains on his teeth that I've complained about before. But yeah, there's nothing wrong with his teeth (though he does have grinding sites), but there's nothing indicating he would be in any pain with anything related to his teeth.

Feeling frustrated at the shuffle, I start wondering about other things. Could this just be a cognitive growth spurt where he suddenly understands new things and is frustrated at things he can't do or can't communicate or just is overwhelmed by all the sensory inputs going into his brain?

Could this be because of his latest trend in seizures? Where he doesn't fully lose consciousness in a giant grand Mal seizure, but rather is having mild partial seizures a lot more often? Perhaps, these alter his perceptions, and make it difficult to make sense of things around him and he's scared and stressed?

Or perhaps, it's not one thing, but all of these things, plus who knows what else? Perhaps it was ear infections and middle ear pressure, but now is mental emotional stress. I don't like that answer as how am I ever going to figure all of it out?

I try another day with ibuprofen, you know, just to see.

Damnit! The ibuprofen still works! So, he probably is in pain. What are we missing?!

Cyrus after a dose of ibuprofen...

This past Sunday evening he had the worst meltdown - one that felt both heartbreaking and puzzling. He was angry at first - screaming and vocalizing his complaints, but not really crying - more the Cyrus equivalent of yelling. He did this for two minutes or so, and then out of no where he was laughing so hard!

Where did that come from?!

Don't question it! He's happy now right?!

Then another minute or two pass, and he's crying - his whole form wracking with crushing sobs, tears pouring down his little red cheeks. He couldn't be consoled. And this goes on for another ten minutes - where he's just changing instantly from one extreme emotion to the next - until he finally cries himself to sleep.

This is not normal. This is incredibly weird - like neurologically weird! Could this be a different type of seizure? Like seriously, what is happening in your little brain dude?

So we call the doctors again, this time basically just crying out for help. I explain that we've been shuffled every which direction, and still have no answers. And thank goodness for our wonderful pediatrician. She gets back to us so quickly, and she admits that she's shooting in the dark, but at least she takes me seriously, and suggests a few other tests we can try.

Thankfully, Monday was significantly better, but he seems to gradually ramping it back up each day that goes by. It's definitely time to run some tests! I don't know if any of it will pan out, but it feels better to be doing something.

And in the meantime, I guess we will have more snuggles on the couch. Maybe binge watch something. I didn't want to grade those quizzes or labs anyway!