Jun 26, 2011


Earlier this month we took Ryder to Primary Children's Hospital and he had an endoscopy, which is a scope of his upper G.I.  They took pictures and a biopsy just to make sure we weren't missing anything such as reflux. 

Things looked great said the doctor, and so then we waited for the results of the biopsy later that week.  Doc called and said the biopsy was negative for allergies to gluten and milk sugar. 

This is all well and fine, but how do you explain why he is in extreme pain?  We figured, OK, so lets give him a regular diet and see what happens.  Maybe after it being so long, his gut had healed?  I introduced back into his diet the regular foods, but I did so slowly. 

Here it is two weeks later and Ryder is screaming and crying and very frustrated.  He has had diarrhea yesterday and today.  I just don't get it.  I can't tell you how many times I have been lectured by doctors that he needs Miralax (or something similar) to make sure he is not backed up.  If I am going to give him Miralax, then please, Doc, come over and clean up the mess it makes all over the carpet, bedding, walls, etc.  HE IS NOT PLUGGED UP!!  Granted, there have been times that he has been, but not this time.  

I feel so defeated and hopeless.  My baby is in pain and cannot tell me verbally other than to scream and cry and whine.  It grates on my nerves.   The endoscopy was my last resort.  What about a colonoscopy?  The pediatric G.I. never mentioned that. 

What if this is some weird undiagnosed condition that he/we will have to live with for the rest of our lives, having no answers?  It just plain sucks.  Done ranting.  Off to do my duties.

1 comment:

  1. I have no idea whether my situation is similar to your child's, so please understand that I am only telling you of my situation so as to give you a slightly different perspective. Maybe to trigger a new idea or something. I have a diagnosis of ADD, but some people have told me I have Asperger-like traits. I have read that people with autism often have bowel problems. I used to have vague stomach aches when I was a small child. I have had bouts of diarrhea throughout my life, and learned that some foods cause it. I am even allergic to some foods that cause diarrhea and vomiting. The allergies and/or sensitivities have increased to include additional foods. But the most amazing thing to me was when I had the Noro virus and vomited until green vile was all that was left. When an x-ray was done, I saw that I had what I suppose must be considered constipation. This was a surprise to me since I usually have more than one BM a day. After that, the doctor put me on Miralax and Benefiber every day. If I don't take it, I have uncomfortable cramping that sometimes becomes extremely uncomfortable. They are calling this IBS. So, it's possible to retain stool, even when stool is passed. The Miralax adds water to the bowel. I consider this useful because the antidepressants that I take remove water from the bowel. I certainly was not aware of this before the gastroenterologist told me. The Benefiber adds volume to the bowel contents, which is helpful when the peristalsis is weak. What I learned from this is that my digestion has not been what it seemed to be. If I take those two supplements, I have less gas and almost no abdominal pain. So, maybe you need to ask the doctor how it works and how it will help your son to take Miralax. It is counter-intuitive at the least.




Ernie and Oscar learn they like different things-great for kids on the Spectrum!