Josiah has lots of little ulcers in his esophogus that apprently have been there for quite some time.  He also has reflux. That’s what the GI Dr. told us yesterday in the hospital. That may explain why the boy hits himself in the head and pulls his hair or my hair or anyone who happens to be in the hair pulling vicinity’s hair.

But maybe it doesn’t.

This non verbal stuff stinks.  If he could just talk and tell us what hurts, it would be so helpful.

Since he can’t, we guess.  We do our best to make an educated guess based on data we collect. But in the end, it’s all just a guess.

I would have NEVER suspected ulcers or reflux.  Never.  Josiah eats really well.  He eats quite a bit of food at most every sitting and he loves everything and anything you put in front of him. Shouldn’t he be a more picky eater if certain foods cause pain going down or coming back up?

All along we’ve been hyper focusing on constipation issues thinking it’s the major source of his pain.  I’m still convinced it is to a  large degree.

However, based on the colonoscopy he had done yesterday, things look fine.

It’s been a long road on this most recent medical journey with Josiah, putting together bits and pieces of information to try to form an educated guess as to what is going on with him.

It was almost one year ago today Josiah came off the school bus looking as if he had been the loser in a horrible boxing match.  It was almost one year ago today Josiah was admitted to the hospital in Galveston for 1 week and then transferred to Health Bridge Pediatric Hospital for 10 weeks.

In an effort to have  a really great snapshot of what life has been like for Josiah over the past year, I typed up a detailed account of the behavior patterns Josiah exhibits prior to and following bouts with constipation.

It’s interesting to note that these behavior patterns used to occur in a much milder form every 6-9 months, then every 3-4 months, then once a month and now seem to be the norm rather than the exception every single week.

It starts out like this.  When Josiah is at the very beginning of the pain scale, when something is definitely bothering him and he’s not his happy self, we see the following behaviors in this pattern begin to emerge:

1. OCD behavior ~ things laying around get tossed in a nearby closet or out in the backyard
2. insomnia
3. irritability
4. self-injurious behaviors ~ head banging, punches side of head (hard)
5. aggression ~ attacks others, scratches, pulls hair and rips it out
6. only urinates after a bowel movement or when pouring water on him in bathtub
7. refusal to eat ~ lack of appetite
8. refusal to drink
9. very loud vocalizations
10. lots of bouncing/jumping
11. requires squatting to poop ~ poop is snake like pencil thin pieces/defecates undigested food
12. stands on commode, shrieking
13. cries real tears (Josiah rarely ever cried in the past.  He has a high pain tolerance)
14.  great difficulty getting him to go in the bathroom, once there he refuses to leave
15.  intervention required (extra miralax, mineral oil, suppository, enema)
16. bowel movement ~ many stretched through out the day.
17. takes almost an entire day for him to get most/all of it out and be ‘back to normal’

This is a picture of Josiah after we are certain he’s no longer constipated:

1. behavior drastically improves ~ he’s happy and calm
2. extreme fatigue (will sleep for 15-16 hours a day for a few days/week)
3. eats extremely well/large quantities of healthy food
4. drinks 4-6  16.9 water bottles per day
5. sleeps well at night, on average 10-12 hours per night
6. much calmer
7. sweet and agreeable
8. weight fluctuates ~ he loses 1-2+ lb

So after 2.5 days in the hospital, a colon cleanse, an enoscopy and colonoscopy with hours and hours and hours of sleep, Josiah has been hitting himself in the head and pulling at his hair today.

I give up.  I’m at a loss.

I think I’ll need some time to reflect on this further.  I’ll be back in a week.