Wednesday, August 5, 2009

At what point to do we use the R word?

Dominic's had a runny nose for about a week - I caught the full virus from him myself, and have been sick w/a fever and sinus crud since Thurs. But he never got more than the runny nose that we saw.

We're starting to see maybe a potential regression... the past 2 days we’ve had much less eye contact, less verbal, and fewer things that were routine just last week (specifically, he is no longer independently labeling the dog statues on the way to Alpine). The morning therapist today actually asked if we were chelating again, which we're not. So its there and its not just us noticing. This fits the same pattern of the last regression we saw back in Nov of 2008 where a couple of days into a virus, things started slipping away. This freaks me out entirely.

I’ve contacted our nutritionist since the doc’s is closed today. I’ve emailed Alpine for them to be on the watch… I don’t know what else to do. He’s already taking antivirals, and I up’d his Zinc and Vit. C when the crud appeared. Maybe we up the glutathione, I have no idea.

This might not be a regression, he might just have a headache and not feel well. He is not running a fever, nor has he this time, so that’s positive. We could be just seeing an ebb and flow… we don’t know. But at this point, how many thousands of dollars into biomedical treatment and ABA therapy – how much fighting for what he needs – how many times have we said we’re on the right track, if we have a huge setback, I just don’t know how we’re going to handle it. I keep saying you play the hand you’re dealt, but we don’t want to be dealt this hand again. We’ve played it already. I don't want to go backwards.

Update:
We’re going to change Dominic’s supplements around – I’ve been emailing w/the nutritionist. We’re going to cycle off of Enhansa, switch to a different antiviral combination and up his anti fungals. Her words were that with some kids its one step forward and then two steps back. But its overall forward moving. I really don’t like this.

1 comment:

jess wilson said...

i'm so sorry .. no doubt you'll get it all sorted it out, but it's never easy to go through times like these .. sending hugs