Well I'd like to say it's complicated but it's not. However, lots of people have asked me what we do while there.
Basically it works like this. In between visits, Charlie has a powder added to his food or drink three times a day. It's an enzyme. It's a SECRET enzyme formula. However I looked it up and spent a lot of time reading before we went on it and it's basically the enzyme that you and I make to help our bodies break down and flush out "large cell proteins".
Translation - Gluten.
I mean I'm sure it's MORE than that. But that's sort of it, in a nutshell. Rather than put him on a restrictive diet and ourselves as well (seriously have you MET us? We're not going on a diet) he gets this additive usually in his drink.
Then the day or two before we go over to North Carolina, my husband has the horrific job of collection about ONE CUP of poop sample and dividing it up into various little containers and cups.
I guess these are to verify that the enzyme is doing what it's supposed to. We had to provide a sample of the poop to qualify him as someone whose body wasn't producing the proper levels OF the enzyme BEFORE the study.
When we go, we arrive HERE - the University of North Carolina Medical Center.
We cut though the buildings in the North Carolina heat, starting at the Cancer center. We walk past people wearing masks and covered in blankets despite it being 90 degrees outside. People waiting for their chemo and other treatments.
People who have far worse stuff than us going on.
We walk nearly the length of the building above on the right - to that back right corner and take the elevator up one floor where the neurosciences department is and go into the Aspire Research Center. We meet with our case manager and a neurologist and we fill out survey questions and talk to them and they interview us and the boys and they do vitals and stuff.
It's sort of odd. We've known these people over two years now. They KNOW us. I kind of look forward to seeing them. They notice when things change with the twins.
So that is what we do. We spend the night in a hotel at a special rate thanks to the amazingness of the Ronald McDonal House charities and we try to get in at ALOFT because it's pretty much the most amazing hotel on the Earth. We LOVE that place.
So that's what we do. We give the enzyme all month. We collect poop (we meaning the Husband). And we travel to North Carolina where they monitor our progress and changes.
Has it helped?
There are things it has made better. Charlie used to live in a state of near constant constipation and obviously if your tummy hurts it impacts your personality when it's long term. So he goes now without any issue and truly, one of the first changes that we noticed was that he went from being a tantrum thrower 24/7 to being a pretty happy child.
Does he still do the autism flip out?
Yep. But it's usually more manageable, and we get less of the "OMG WHY IS HE SCREAMING" sort of tantrums. Usually you can tell what's going on. It doesn't always make sense, but you can puzzle it out.
I think it's helped but now I think that it's going to make potty training, which is on the agenda for this summer, a real challenge. Because not to be too gross - but we don't get terribly SOLID poops now. We've kind of gone too far the other way.
But we'll figure it out.
I hope that this enzyme makes a difference in other people's lives. It's been fast tracked for FDA approval so we'll see. I'll be interested to see what it does on a larger scale. Right now only 175 kids in the country (or at least that was the launch number) are on it. And we're in the first group.
And now you know what we do in North Carolina. Fascinating, eh?