Saturday, February 26, 2011

Hack!

Oh, if it's not one thing...

For the record, I have always been very thankful for the health of my children. I have 5 extremely healthy children, who rarely even get colds. To date, Noah is STILL the only child to ever have an ear infection in his life---and it happened only one time, at that. Can you believe that? How many classrooms of children could claim 4 out of 5 haven't had a simple ear infection? That's so incredible.

Also for the record, Michaela is fairly healthy herself. She rarely gets any sort of cold, flu, or infection either. The first time she ever got an antibiotic was when she got the flu 2 years ago, when she was 11. That's a pretty good track record! Many handicapped children are susceptible to anything and everything that comes their way. Seizure kids usually get hit pretty hard, the sickness symptoms being compounded by the breakthrough seizures that rear their ugly head.

But she does better than most, and is just very healthy everywhere other than her brain.

So, I've made it a point to be grateful and thankful--vocally thankful--for how much I DON'T have to worry about, with the other children.

****

But sometimes, life throws you a curveball.

Such is the situation with Gabe.

If you follow me on Twitter or Facebook, then you already know what I'm talking about. But in case you're not into those things, here's the scoop:

Gabe coughs.

A LOT.

The vast majority of his coughing happens during meals. He's just going on his merry way, enjoying whatever is on the menu that day, when the hacking starts. Oh, sometimes it's just a little "cough, cough," but about every meal it turns into a "HACK HACK HACK." And this can be so forceful that he can eventually loose his meal.

And break blood vessels in his face.

And make him decide that he doesn't really want to eat THAT badly.

Here's what he ate one day recently (his brother's plate...he doesn't eat this much!)...


And then this is what it did to him...


video


Poor guy...

I had been hearing about Gabe's issue more and more while I was gone to Children's. People were babysitting him, and noticing that something just wasn't right. Whether he was breathing really bad, or he was just coughing too much, he just wasn't right....and have I had this checked out?

Well, yes, as a matter of fact, I have.

****

Two year ago, it started. I told our pediatrician about it after a few months, and he agreed with me: it sounds like he's aspirating when he eats. His food goes down the wrong pipe. We tried anti-reflux medication (another reason people cough), and when that didn't work, aspiration just seemed reasonable.

Now, just so you know, I already have one child that aspirates (Michaela) and I'm pretty familiar with how it looks and sounds. I was pretty sure that I now had 2 kids with the same problem on my hands. The big kicker was this: why would an otherwise normal child be aspirating? Michaela's reason is easy: neurological dysfunction. But Gabe is neurologically "intact" and really shouldn't have this issue unless there's some mechanical issue going on.

So, the pediatrician referred us for a swallow study.

And would you believe it, he went through that study (where you eat in front of an x-ray machine) and didn't cough ONE TIME?

Go figure...

So, from all appearances, my hacking child was perfectly fine. And no aspiration to speak of.

But the pediatrician wasn't quite satisfied (good thing, because neither was I), and sent us to a pulmonologist. Who in turn looked at the swallow study, learned that Gabe was the baby of 6 children, and proceeded to take my words out of context and label his coughing as "a behavioral problem." Seriously. He didn't even really examine him. That doc just decided that he was looking for attention, that I must be babying him too much, and that since he passed the barium swallow, nothing was truly wrong.

I was flabbergasted.

I asked him, "So, you're pretty much saying that the only way I can prove that there's something wrong, is to wait until he gets aspiration pneumonia??"

And he said, "I guess. I think you should just ignore it, and he'll stop."

I completely disagreed with his opinion. I knew my kid. I didn't baby him too much. I didn't fawn all over him when he coughed. If anything, I got on his case because he would get to the point of puking all over the place. So I would try to get him to stop coughing, but I wouldn't pamper him because of it. I am the Queen of trying not to "make mountains out of molehills" and Gabe's cough was no different.

But, in order to just suck it up, I said to myself, "Ok, fine. Maybe he's right. We'll prove out his theory. I will completely ignore Gabe and his coughing, and we'll see if he stops 'looking for attention.'"

And that's where I left it...

...over a year ago.

****

But with me gone so much over those 3 months, I wasn't around to "ignore" him. And others, especially my Mom, were a little concerned with his problem.

When I got home for good, and after hearing their concerns, I realized that it had been a good, long while since I had started ignoring the coughing. It was long enough. This needed to be addressed.

Because, like I suspected, he wasn't getting attention, and he wasn't looking for any either.

There was something wrong with my son.

****

So, a couple of weeks ago, I brought him back in to the pediatrician. Again, in spite of the good
swallow study, he agreed with me that it sounds a lot like he's aspirating.

So we redid the study.

And, same thing: Everything looks good. He didn't even cough.

But, the speech pathologist who was there to administer the test, was the same one we had the time previous, and she remembered Gabe. She was pretty irritated that he was back for the same problem, and that it hadn't been addressed fully. And even though the test came back fine, she felt like something had to be done. She pretty much put her foot down and said that something WOULD be done. She let him finish his meal (the test is only about 10 minutes long, and he had more food to eat) so she could watch him further. Sure enough, he coughed. He didn't hack, but she was satisfied that he was indeed coughing when he ate. And that he really didn't want to eat because of it.

In her mind, it started to make sense...

****

See, she knew from his history that he had aspirated a peanut into his left lung 2 years ago. He had to have surgery in order to extract it. The whole episode wasn't the most pleasant thing a child could go through. And he was such a little guy (who is terribly shy), that she was starting to think that his body had developed a habit of coughing to protect that airway.

She knows from her experience, that some people will have these traumatic events, and they will start to instinctively cough. It's their brain's way of keeping that problem from happening again. However, it's an inappropriate response because it's generally not needed--they're not really aspirating. And in an older child or adult, they can retrain their brain to not cough every time they go to eat something. They "talk" themselves out of doing it. And after a while, the cough is a dead issue.

But with Gabe, he wasn't capable of retraining his brain to not cough. He was too young, and not verbal enough to even put into words what was bothering him, so the cough just became a habit his brain formed.

It's not something he has control over. It's not something he's trying to do. It just happens automatically.

But it's not necessary. It has no true purpose.

Yet, it's very much there, and it's only going to get worse as he gets older. He already can have an aversion to eating because of all the coughing (and puking), and he doesn't need that to get even more pronounced.

Well, it's her theory.

Sounds pretty legit to me.

****

So, as of right now, that speech pathologist got us hooked up with another therapist who specializes in correcting these unnecessary coughing spells. Can you believe they actually have someone who does that? Must be a popular problem!

We also have an appointment with a Gastroenterologist to rule out reflux. That was the pediatrician's idea. I think it's possible, at this point, but he has no history of reflux--not even as a baby--and he never responded to the anti-reflux meds that we tried when this all started.

But we'll see. He seems to have more symptoms of reflux now than he did even 2 weeks ago.

And even if that's not it, I totally can see him having that psychogenic cough the therapist described. He doesn't completely fall into that definition either, but it sounds close enough to be the likely culprit.

Either way, I'm glad that something is being done to help this problem. Poor Gabe. He just looks so pitiful when it happens. That video was just the tail end of a very forceful coughing fit he had one day a couple of weeks ago. I videotaped it in order to prove what I was seeing, even if the doctors never got the chance to see it first hand. In the clip, it all started from a chip he ate. However, it usually isn't something so pointy and "cough inducing." He hacks on everything from applesauce to chicken.

Sigh.

If it isn't one thing!

But I trust he'll be doing better by the end of March, when he goes through therapy and sees the GI doc.

Maybe then the hacking will be a thing of the past, instead of something that's been bothering him for over half his life.

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