Nicholas has been on Enhansa for about 3 weeks now. The first week, the die off was insane, but we pushed through. Now, he has regressed – and I am hoping this is a healing regression – and he will come out the other side doing better. I did drop his dose down by half yesterday and he’s doing a little better today, but we’ve seen behaviors like defiance, not understanding/hearing us, not responding to his name or when we’re talking to him, totally obsessed with playing with water in the sink, massive temper tantrums, etc – these are all things that we have not seen in quite some time and they’ve just re-emerged all at the same time.

That said, for the first time ever, he told me that his tummy hurt tonight. He’s never ever said anything like this before. There have been other little hints that lead me to believe that it is doing something helpful – but it’s just the getting through this that’s the hard part, for him and for us. Last night, he could not wait for my father in law to come into the house to open his birthday present and Nicholas helped unwrap it for him – the second he walked through the door, Nicholas ran to get his gift – he knew it was his birthday and he got a present. This afternoon, he got on the phone and sang happy birthday (another first) – He’s understood concepts like water going down the drain. He’s asking me “mommy, what are you doing?” quite a bit. So, good things are happening… it’s just so hard to see the good through all the regression.

He took me upstairs to open our attic door because he knows Santa is coming and is looking for his presents. I just about cried when I realized what he was up to. (Nicholas, if you can read – your presents are in Mommy’s office)

On Thursday night, we were a couple of hours away from home and had pulled into the parking lot of our hotel. Adjacent to our hotel was shopping complex which we could just see the side of the complex, so signs or anything. Anything except for the big lit up Toys R Us logo on the side of the building. It’s 11pm and Nicholas joyfully exclaims – Toy Store Mommy! let’s go!
So we checked in, put our stuff in our room and took him to Toys R Us – since they’re open til midnight for Christmas, we figured why not. Nicholas walked around looking at all of the toys and telling us what he wanted. We did manage to get out of there without buying anything (how that was possible, I will never know) But, as we were leaving Nicholas jumped in one of those little rides they have in the front of Toys R Us and put two quarters in (that he had in his pocket) and actually stayed on the ride. He had so much fun steering the wheel and pushing the buttons. This was the first time he has done this – we had never been able to get him on a ride like this – ever. This past summer, we could not get him on any rides when we took him to the Jersey Shore.

So, lots of progress – and lots of regressive behavior.

I dropped his dose down to 75mg on Friday, 12/19 and we’ll keep it there for a bit and see what happens.