Hi everyone,
I haven’t been around here as much as I used to be, but I just thought I would post an update about Paige and Ben. As many of you know, we’ve had a rough road with Paige over the last 2 years (a lot of pain, posturing, terrible sleep, still on Neocate at age 2). On November 11th, both Paige and Ben had upper endoscopies, colonoscopies, and pill cams. We went down to Austin Texas to have these done by Dr. Krigsman. The trip went well, and the kids were little troopers though all the prep and the procedures.
Paige’s endoscopy showed some pretty severe stuff. She has erosive esophagitis, erosive gastritis, and erosive duodenitis, as well as signs of chronic GERD and inflammation. After coming out of the ER, Dr. Krigsman told us that she is definately a little girl in pain, and no wonder she couldn’t eat anything but Neocate. He immediately had us put her back on Prevacid and also prescribed Entocort, a corticosteroid usually used for patients with Crohn’s disease. It works by reducing the inflammation, thereby helping the gut to heal and reducing the pain.
Now the good news – she has been on the Entocort for 2 weeks and she is doing so well!! She has slept through the night about 8 or 9 times in the last 2 weeks! That’s more than she has slept through in the last year! Also, she is actually HAPPY! She wakes up saying “mommy, daddy, where are you” instead of screaming. She now smiles and says hi to people in a store, instead of turning away and crying! I have known for so long that all of her symptoms were because of her gut and her pain, and I’m just so thankful for Dr. Krigsman to really see this and treat it! I hope we continue to see great gains, and perhaps we’ll be ready to trial some foods in a few months.
Ben’s been doing pretty good as well. His pill cam showed a lot of tiny ulcerations dotted throughout his small intestine. I’m really thankful for the pill cam, because neither his endoscopy or colonoscopy could reach this area that was causing him problems. I just had a phone consultation with Dr. Krigsman the other day about Ben’s pill cam, so he now wants us to start Ben on the Entocort too as well as another steroid, prednisolone, but that one is only for 60 days to help get the inflammation down quickly. In the long run, he will likely transition him off of the Entocort, and onto a 5-ASA type medication. He also saw a lot of lymphoid nodular hyperplasia (LNH) in his large intestine, which is commonly seen in children on the autistic spectrum who have suffered vaccine injury. That is going to take a long time to address, by getting his immune system functioning properly again, but I have a great DAN doctor helping me and lots of support from parents going through similar issues with their ASD children. Symptomatically and functionally, Ben is doing really well. He has come so far in the last year that most people wouldn’t know that he has been diagnosed on the autistic spectrum. He’s been such a little trooper.
Here’s a picture I put together of some of the kid’s endoscopy/colonoscopy pictures. I know some of you have seen it on Facebook already, but thought I would share it again here:
And here’s a recent pic of Ben and Paige. They are the best of friends!
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It’s great to hear things are looking up for them. What a relief this must be for all of you.
I also think of the kids often and am glad for the update. you are an AMAZING Mommy! They are so blessed to have you and will reach their full potential and more with you!!!!! Hooray for sleep!!!!Ann Marie
