RAISING JOEY

The results

So thankfully Joey’s colonoscopy came up negative for celiac which means that he was not being exposed to gluten and also came up negative for Crohn’s Disease. The one thing it came up positive for again was his lymphocytic colitis. He had blood in his small bowel and that blood was washing back up into his stomach which would be why he had blood in his poop.

His GI doctor prescribed him on medication which he has been on for about 1 1/2 weeks and I’ve already noticed a slight change for the best! This medication can take several weeks to work so we’re just keeping our fingers crossed and pray that it works!

As for his behavior, he’s still hitting his head into the walls whenever he gets upset. We keep his weighted vest (which does help some) on him as often as we can but days like today where the temperature is going to be in the mid 80’s, I don’t want to chance him getting overheated.

I’m also hoping that Joey’s new stomach medication might help to lessen his bad behavior. I often wonder if he’s acting out like he does due to his stomach hurting.

I’ve also been in contact with Boston’s Children’s Hospital which has an excellent Down syndrome clinic. So it looks like sometime in July we’ll be making a trip up to Boston so see what all they have to say.

More tummy woes

So we’ve had our hands full with still trying to unpack and getting settled in especially with Joey. The poor kiddo just does not adjust to change very well at all. We’re still having behavioral problems with Joey hitting his head into walls and crying a lot. And to top that off, he’s been having issues with his stomach again. His BM’s have been testing positive for blood, so yesterday Joey had another colonoscopy/ endoscopy to see what was going on in there.

The endoscopy was perfect, nothing wrong detected. When his doctor got to his small bowel, there was a lot of inflammation and blood. There was even blood in his stomach which Dr Z thinks is backwash from his small bowel. Also, a section of his colon was thicker than normal.

There could be three different things wrong with him that would be causing him to have bloody poop, he could now have Crohn’s Disease, his lymphocytic colitis could have turned into inflammatory bowel disease, or his Celiac Disease (even though he’s on a gluten free diet)

We’re not sure if somehow he’s been getting exposed to gluten. Last year when Joey was tested for Celiac Disease, it came up negative, which doesn’t always mean that an individual doesn’t have a gluten intolerance or Celiac Disease. I’ve been so careful with my cooking, I check every single label before fixing Joey ANYTHING to eat. My only thought it that perhaps he’s getting cross contaminated somehow. I just don’t know.

The one thing I do know is that the results can’t get here fast enough. We should hopefully hear something by Wednesday evening or Thursday.

I’m also hoping and praying that perhaps his current behavioral problems are a result from his stomach hurting and when we get that under control, the head banging and crying will stop.