Tuesday, December 6, 2011

Here we go again!

First of all welcome back to those of you who actually read this blog in spite of my failed efforts to keep it current.  I have to be honest, sometimes when dealing with chronic issues in your child, it is hard to keep ones focus in the right place.  It is easy to become discouraged, or to feel consumed by the problems you encounter on a daily basis.  While I want to be informed and enlightened, I also don't want to be consumed by fear or worry.   It is hard balance as we search and hope for a cure for our child.  Balancing the need we have to fight for our child's well being, and yet the desire we have to submit to God's will for our lives.   Working constantly to help them, and yet at the same time being willing to accept and let go of the things outside of our control.    It is a fine line.

I took sometime away from the Internet and blogging to just be quiet and calm my mind and thoughts.   For about 6 months Henry has been drinking thin liquids without aspirating.  It is nothing short of a miracle in my mind.  I remember when he had his G-tube, I remember when he couldn't eat and the doctors told me they didn't know if or when he would ever eat.  It was a dark place, it seems like a very  faint memory now.   I attribute all of the healing in his body related to eliminating many foods from his diet, shortly after the diagnosis of FPIES or Food Protein Induced Enterocolitis Syndrome.   I saw my son swallow water for the first time 6 months ago, something he had never been able to do with out choking. 

The one thing still not under control has been chronic diarrhea.  Henry seems to have a chronic form of FPIES and delayed reactions to the foods that hurt him, making it hard for me to figure what he is reacting too.  I put together some pieces of the puzzle, but it seemed to me that something was still missing.

A few months ago Henry had an emergency called intussusception.  The doctors don't know what causes the intestines to telescope onto themselves in this way, cutting of the circulation and eventually causing death to the gut.  Thank God we got him in early enough and he did not require a surgery or have any "lasting" affects.  I did notice a change in him ever since that happened.  Along with bloody stools and even after that resolved, Henry just stopped eating.  After a few weeks it was enough for him to eat one or two bites of food a day, and he was hardly drinking.  I began to become extremely concerned.  The doctors didn't know what to do.    I started to research and remember things I had looked into in the past--the other pieces to Henry's puzzle. 

I have always wondered about Henry having a "leaky" gut.  It seems he's had mucousy diarrhea since birth.  We got it under control with the elimination diet until a few months ago when it returned along with new weird rashes.  Henry has been on antibiotics and steroids most of his life.  These drugs are known to disrupt the normal flora in the gut.   This opens a door for opportunistic yeast, candida albacans to flourish and grow.  The rashes Henry has on his face and bottom look the same, I am nurse, I know they look like yeast.  Have you ever had yeast?  It burns, it hurts, it's not fun.  If Henry has this inside his whole GI tract, maybe that's why he wont eat.  I've always had him on a pro-biotic but I recently read an article about how one needs to be on a pro-biotic with several different strains and for a child his age he need about 15 billion units.  The one I've been giving him has about 5 billion.  It's also hard to find a good probiotic for an FPIES kid who is reactive to all kinds of things. 

I started reading more and more and I ordered Dr. Natasha Campbell-McBride's book called "Gut and Psychology Syndrome."  A few weeks ago Henry was pasty white, he had lost a pound and a half and was 23lbs 3 oz at 30 months old.  His little arms and legs were so thin and I could see his ribs.  I was scared, because he would not eat and as you know, I don't have a G-tube any more to force calories in.  I read the book and I'm still reading it over and over.   I started making bone broths and the child who was refusing to eat actually has been drinking these broths filled with fat and nutrients and before my eyes, I am seeing slow progress.  The diarrhea stopped and it seems the pain, that was causing him to refuse to eat, has stopped as well.   Today he ate squash, which he would NEVER touch before this and several plates of chicken.  It was amazing to see.   We are trying something I feared to try, another elimination diet, but this time with the goal of actually cleaning out his gut and rebuilding it so to speak, with good flora and new cells.  Is it possible?   I'm hoping so, come on the journey with us and lets see what happens, we've got nothing to loose.

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