Tuesday, September 30, 2008

An Update

Despite my best intentions to blog on a regular schedule, I just don't seem to have the concentration any more to "attend" to it.  Perhaps it is a function of just not having enough to say, or maybe my kids' lack of attention and impulsiveness is rubbing off on me. Now that I've discovered the lure of Facebook, I may never see the sun again.

Conor has been making pretty good progress.  The biomedical interventions that we have tried have made a difference as well as some pretty hard work by his teaching team.  Recently, we discontinued the behavioral therapy program that we've run, in-home, for 4 years.  It was a necessary evil (kind of like the cod liver oil we give him) but we are so happy not to have to manage therapists anymore.

Here's our current set up.  Conor is in school from 8:30am until 1:30pm.  One day a week he has art therapy, one day a week he has occupational therapy.  Otherwise, it's Mom, Dad and his babysitter taking turns in the afternoon.  So far, we've all been pretty happy with the change in arrangements.  I don't know that I realized how much of a toll this program took on all of us. Yes, it was great when people showed up and C learned a new skill. Yet, each person took managing, as we all do in our jobs. And those that didn't show up, or just couldn't cope with C threw everything into chaos.  Above it all, however, is that it's actually now not horrible to spend time with my son.  It's no longer a huge struggle to do simple, daily, everyday family things.

Don't get me wrong, it's still hard. All the stress has caused me to develop quite the stomach ills. But nothing's harder than watching your child hurt himself and others and these are mostly in the past.  Each time it pops up again, however, I get that sick feeling in my stomach.  Self injurious and aggressive behavior is largely gone, but not completely.

And then there's just the weird behavior.  Licking a girl on the arm in the ocean.  Insisting on changing clothes in public at the pool.  Temper tantrums over adult swim at the neighborhood pool (never going back there again).  Saying that kids are scared of cats or babies.  Thinking that he's Harry Potter and that he can go through walls and fly.  Scarey, eh?  What if he really tries to fly off the roof or something?  Even I can only worry about so many things I guess.

On the biomedical front, the usual things keep working and trying new things always throws a wrench into it.  Here's what he's currently on:

Clonidine for sleep and OCD
Pentasa for ulcerative colitis symptoms
Singulair for allergies
Zyrtec for allergies
Zinc for general health
Magnesium Malate for pulling aluminum
GABA, an amino acid for stress relief
Cod Liver Oil for brain function
BH4, something that helps his mood, not sure what, big long name, tetra something or other!
Trienza, digestive enzymes to help with dietary infrations
Fluconazol, an anti-fungal that he just can't seem to get off of
Grapefruit seed extract, a natural anti-fungal
Benefiber, man, my kid is con-sti-pat-ed
Calcium butyrate, supposed to be soothing for the intestinal wall
3Lac and VSL alternating, probiotics for intestinal health and to try to keep the beasties out of the gut

Still gluten and casein and soy and corn free diet. Recently tried Levocarnitine and full dose seems to make him agitated.

Ugh.  Enough already.