So Confused…

I don’t get it.

Don’t get me wrong, I have heard the stories. I have read the blogs and seen the documentaries. But this is still SO CONFUSING! One minute he acts normal, the next he is chewing himself to pieces and doesn’t care. I just can’t understand what is going on with him.

The hardest part is getting our hopes up. I have heard about kids that don’t feel pain and then one day, some time down the road, they all of the sudden do. Like  a light switch went off or something was delayed in their neurological development and it finally caught up with them. It’s a fantastic dream. But not reality (yet). Every time we see SOMETHING that looks like pain recognition, we leap for joy. Most often, however, we are sent crashing back on our tails.

I think he is “learning” pain, at least. He doesn’t feel it but he is learning what sensations accompany the negative response he gets from us. For example, we have made a point to tell him about his pain. Every time he does something that should hurt, we say, “Oh, no! That’s an Owie! Are you okay?” You know… make a big deal about it. (Something we have all been told we are NOT supposed to do with our kids. Ha!) Since he is our second child, this seems to work because his big sister cries when she has “owies.” He is learning that an “owie” is something to be bothered by.

But it isn’t consistent.

If he trips and bonks his head, he rubs it vigorously and we say, “Owie!”  He has even started to look at us and make a little moan while rubbing his head. Almost makes you think he felt it! But if he bonks his elbow or something and we say “Owie!” he will rub his head. If he starts chewing the inside of his mouth, we say “Owie,” he rubs his head and just keeps trying to chew. I guess there is hope in him learning that way, at least. Even if he never really knows the actual pain.

The gum/cheek/lip chewing is the WORST part. The last two weeks have been downright rough in that regard. He has a big chewed-up spot on his tongue the size of an oblong nickle and every time is starts to heal, he does something to tear the healing tissue off and the process has to start all over. Now he has moved onto his cheek and inside of his lip, too. He even had a half-swollen face from all the biting damage for a couple days. It’s building up a pretty heavy amount of scar tissue, but it has slowed down now we have finally gotten to the point where he has had no more than one teeny bite a day for the last three days. Today, he didn’t bite at all! He is also learning what “No Biting” means, although he doesn’t understand it on the level we would like, yet. He’s just too young. But he does know it involves his mouth and that he is not supposed to do it.

I am sure I have mentioned it before, but the chewing isn’t from boredom or anything (except for when he starts gnawing on his hands/fingers). He is just like the rest of us- he injures the inside of his mouth from an incidental bite, and just like us, he plays with it. The only problem is that we know when to stop. He just keeps going…and uses his teeth. Next thing y0u know, there is blood everywhere. The other day, I layed him down to try and see where he was biting and get him to stop, and he started choking from the blood. The damaged tissue swells, and become even more interesting for more chewing…more bleeding… more swelling…

I am not trying to be dramatic. This IS how it is and I want those of you that are facing the same situations to know how that. It’s the most helpless feeling EVER to see your child harming themselves and there is little you can do to stop them. This must be why so many kids with this problem end up getting all their teeth pulled around 18-24 months. The more teeth they have, the worse the damage. We REALLY do not want to do that so we do our best to discourage, distract, and teach him that it is not okay. Therefore, finding effective distractions are key!

That said…. Gogurts.

You know, the yogurt in the tube that probably has way too much sugar for a little kid? Yeah, those. Freeze them and then break them out as a distraction/swelling reducer. It works so well that a part of me fears someday he will bite himself JUST to get the yogurt! Kidding. Just don’t run out- they take a while to freeze and you never know when you need one.

Anyway… Just when you think you have it figured out… Just when you think you have some kind of control, or hope- be ready to be proven wrong. There is no defined road. There are no answers without mistakes in the middle. It’s a confusing mess. But one will be sorted out in time, I guess.  In the meantime, NO BITING!