My son underwent his endoscopy and pill cam procedures exactly 16 days, 19 hours, and 45 minutes ago… but who’s counting?  I’ll tell you who’s counting, me!  If you’ll give me a moment of your time I’ll try to explain why I am counting. In the end, some of you might think I’ve completely lost my mind… but then, you probably already felt that way prior to reading this post so just continue on forward.  Those of you with more open minds… more willing to accept that sometimes things happen we cannot explain.. well, have I got a story for you!

Prior to going to Texas for our meeting with the fabulous Dr. Arthur Krigsman, my son was not doing well at all.  His behavior was all over the place, his language was slipping, his eye contact had lessened, he had diarrhea (as he has since age 2).  Yes, things were not good at all.  As a matter of fact, I had already decided that I would start looking into homeschooling my son since I was convinced he just wasn’t going to be able to function in a mainstream/typical classroom – and being that the only alternative in my town is a full-time special education classroom (where autism is a lifetime disorder from which a child cannot recover), the only option seemed to be homeschooling.

I was beside myself with worry, my son was slipping away AGAIN and I couldn’t seem to help him.  We were all stumped.  My anxiety and worry manifested in hives – that was fun in the over 100 degree weather – and sleepless nights.

The night before we left for Texas, I found myself unable to sleep again, wandering my house, trying to get to a place of calm.  In an effort to get a little sleep, I made a deal with myself:  Do not think about school until we’re back from Texas.  Just put it out of your mind.  When you get back, you can jump in with both feet and tackle the problem.

After a few hours of sleep I felt, at long last, peace.  I was going to focus on my son and this journey to Thoughtful House, and nothing else.  The rest would be addressed when the time came.  Focus on the now (Eckhart Tolle would be so proud!).

We were in Texas for 3 days.  It was hot.  Charlie was without his supplements for the entire trip (had to pull them for the procedures – big risk… wasn’t sure if it was the right decision… now I know it was), so behavior was most definitely an issue.  Add to that the fact that Charlie had to fast starting Sunday night, and couldn’t eat again until 8 hours after the procedure (to give the pill cam time to make its way through the empty GI system).  Add to THAT the fact that starting Monday afternoon we had to initiate a complete cleansing of the GI system – stool softeners, and a couple of enemas.  If you’ve ever been scoped, you know the drill. Yeah, Charlie was in a pretty crappy mood (no pun intended).

As I reported upon our return, everything went fine – excellent actually.  We had a wonderful experience and are forever grateful to Lucas Ramirez, Nora, Dr. Krigsman, the staff at Thoughtful House, and the wonderful staff at the surgery center.  Charlie’s DAN! doc asked if it was worth it… the expense, the risk of taking Charlie off of all his meds.  Was it worth it?  Hell yes it was.  I’d go back in a heartbeat!

Now to a strange, but glorious phenomenon we have been noticing since our return from Texas.

Several days after we had returned, I noticed that Charlie was happier, chattier, less combative.  My husband remarked on Charlie’s increased eye contact (as in Charlie would approach us to talk and look at our eyes before he ever said a word, then hold the eye contact until we were done talking).  My mother noticed Charlie’s language was back, plus some.  I noticed my little man was just plain happy.

As the days have passed, the improvements have continued.  Besides the things I mentioned above, we can now add to the list being successful in his typical/mainstream 1st grade class (with no aids or helpers), and… you might want to sit down for this one… NORMAL LOOKING POOP!!!  My son has had diarrhea for almost 5 years; but, ever since our return from Texas, Charlie’s stools have been solid, normal looking… what poop should look like.  For all of you autism moms, dads, and grandparents out there who understand the significance of poop – I know you’re hooting and hollering for joy right now… CHARLIE HAS NORMAL LOOKING POOP!!!  For those of you who do not get the significance of the poop, trust me, it’s all about the poop.  Our poop tells us what’s going on in our body.  When someone has diarrhea for almost 5 years, that is not good (which is putting it lightly).

For the last few days I have been in awe of my son and his improvements.  How was this possible?  WAS this possible?  What in the hell is going on?  And then yesterday I read THIS post on Age of Autism, which linked to THIS article on the ARI website.

I was shocked and hopeful when I read:

Victoria contacted the physician who performed the GI examination to find out what was responsible for Parker’s improvement. She was simply told that he was given a standard GI workup, and none of the tests could have had an impact on his bowel movements or behavior. Victoria then requested a list of the tests given to Parker so she could try to figure out, on her own, what may have been responsible for his sudden and dramatic improvement.

After studying the details of the tests given to Parker during his GI workup, Victoria felt that secretin was likely responsible for his improvement…

Could this be?  Is this the phenomenon we were seeing with our son?  And where does the secretin come in?  How did Victoria figure that out? I knew my next big research project would be secretin and this story.  But still, I felt like I was going crazy.  Every single day, new and exciting changes were happening with my son.

Example:  My sister brought her 1 year old daughter to town for a visit.  Charlie has issues with babies – rooted in his issues with crying.  He cannot stand crying.  He will go off the deep end if someone, especially a baby, is crying.  But yesterday my son played with his cousin.  He spoke gently to her.  He helped her.  He walked her in her stroller.  But then she started crying (she was tired).

I immediately started to remove Charlie from the room (conditioned response), but my mom said, “Wait… look.”  We watched Charlie look over at the baby curiously.  He then said, “Awww, poor little baby!”  And then my son, my son diagnosed with autism, walked over to the baby, patted her on the arm, looked her right in the eyes and said, “I love you.”

I cried.  I’m crying right now.  My son gave a spontaneous, “I love you” to a crying baby??!!??  Now I know something odd, but wonderful, is going on.  I vowed to make some calls.

So this morning I called Thoughtful House to speak with Nora.  Sadly, I was told Nora no longer works for the organization.  They wouldn’t explain why, or where she went.  What a shock.  Nora was one of the main reasons our visit went so smoothly.  She is an awesome lady, mom of a child affected by autism, and she clearly loves the kids she is helping.  Nora, where ever you are, you will be missed!  I will always have a special place in my heart for you.

I immediately hung up and started to call Dr. Krigsman’s New York office.  I hesitated, I felt like everyone there might think I was a complete nutter.  But I had to know.  I took a deep breath and dialed the number.  One of the girls answered and I said hello.  I said, “I need to ask you a question, I hope you can answer… if not, maybe you can just pass this on to Dr. K and we’ll see what he has to say about when we talk in a few weeks.”  She said, “Okay. Go ahead.”

I took a deep breath and said, “Have you ever heard of the kids improving after the procedures but before any treatments are started?

She said, “Yes.”

I exhaled loudly, not even aware I had been holding my breath.  I went on to explain the improvements I’ve seen in Charlie since returning from Texas.  When I was done she told me this was something they do see.

I said, “I’ve been going over and over this in my mind, trying to come up with what could be happening.  My only thought is that the complete cleansing has something to do with this…”

She said, “I think so too.  I think it’s the detox part of it.  That’s my theory anyway.”

I thanked her profusely and told her I was looking forward to talking to Dr. Krigsman about this further.  I also mentioned I appreciated the information she shared, because before talking to her I was convinced I had finally, and totally, lost it.  She laughed and said, “I don’t think so.”

This entry was posted on Friday, August 15th, 2008 at 2:06 pm and is filed under Age of Autism, Charlie's World, Dr. Krigsman, Thoughtful House, autism, treatment, updates. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.