The results are in...

Hi all... well.... we got the results back from Ben's Austin procedure- the pill camera, endoscopy, colonoscopy, and biopsy. The biopsy showed some inflammation, somewhat abnormal, but nothing major. The pill camera, however, showed an entirely different story. It showed evidence of erosions, lesions, and ulcerations. Very small, mind you, like millimeter in size, but certainly there. There was also evidence of early Crohns Disease. This does not mean he will have Crohns disease later, but it is a possibility at this point. For now, he has been diagnosed with "Autistic Enteritis"- a bowel condition common in the autistic population. SO the treatment now is medication. He started on Pentasa, which he has been taking for a week now. Thank GOD we haven't seen any major side effects, so he seems to be tolerating it pretty well. He will take this 3X daily with food indefinately right now. He will also have to be scoped again at the end of 2008.
Fun stuff... We are fighting our insurance company on denial of payment for the pill camera portion- they still consider it experimental. Well... if we wouldn't have done this, we wouldn't have seen the source of Ben's problems! The pill camera can go in places that the scopes cannot. Yet another frustrating thing in the day in the life of the world of autism! Just think of those families that need the pill camera but cannot afford it and are not finding the source of their child's problem- and their child cannot tell them what hurts or what's bothering them. For that matter, insurance does not cover about 75% of Ben's treatments. I recently heard about something called Nick's Law here in OK, where they are trying to get a bill passed mandating insurance start covering autism related expenses. I mean it's in everyone's best interest, if we can't start helping these kids NOW, taxpayers will be paying for these autistic adults for the rest of their lives. hmmm....
OK, I'll get off my soap box now.

The good news is that we've taken Ben off of his Vitamin B12 injections because we've felt like it's been hindering his potty training. Every time he pulls his pants down he thinks he's getting a shot. The anxiety is traumatizing. SO we decided to stop and see what happened. It's been over a week now and we haven't noticed much difference. YAY!

Happy New Year!

I can't believe it's 2008! What a year 2007 was for us... sad to say, but I'm glad it's over and looking forward to 2008 being a great year for the Staffords! The last few months have been a bit of a blur, between Brandy having foot surgery and Ben having a colonoscopy/endoscopy/pill-camera done in Austin. We have really stacked up the medical bills! :) Most of you know that Ben had the scopes done, to investigate his ongoing tummy problem. He did so great! The facility we went to in Austin was fantastic- Ryan and I actually went into the operating room with him and helped put him under anesthesia- this was by far the worst part and hard for us parents to watch, but he was quickly asleep and the rest was pretty easy. The GI doctor is one of the most well-known in the country in terms of the autism world, so we were in good hands. He inserted a pill camera into Ben's belly, and Ben wore a recording device around his waist that recorded the pill cam for 8 hours. Very cool technology- of course Ryan was loving that! Everything looked great except for one area that had some "bumps"- they call that lymphoid nodular hyperplasia- it's really common in kids with autism- we are awaiting the results of the biopsy and results of the pill camera before determining treatment- probably medication. We are praying that this will clear up his tummy issues and possibly even address some of the autism symptoms as well. O how I pray...
We had a great Christmas- spending time with both families. Ben enjoyed Christmas, I think, it was a little overwhelming at times. He wasn't really that interested in presents, as we expected, but is enjoying them now. Lately we have been dealing with some behavior issues, mainly listening, minding, discipline, just getting his darn attention!!! Sometimes I forget that he's 3 and not 2! We are trying to find someone that can help us with some of these issues- if nothing else- help us with how to deal with him better- he can be a real handful!
It has come to our recent attention that Ben probably has ADHD along with autism. Ahhh... fun stuff. What's weird, is how similar they are. This is my next topic of research.

Now for the good stuff.... Ben has been talking up a storm!! He has been showing us stuff, sometimes even wanting our attention or help, and asking questions. I promise I will NEVER get tired of "What's that, mama?". It's like music to my ears. Yesterday he picked up a new toothbrush in the package on my bathroom counter and said, "This is a new toothbrush. We got it at Wal-Mart!" Yep, Ben, you're right! The other day, he drew a house on his easel, and told me he wanted me to draw "colored christmas lights" on the house. He is also close to writing his name and sounding out words. Now that's pretty cool!

Until next time!