Fish heads, bone broth and chicken feet. Oh my!

About 4 weeks ago I looked at my son after his bath, his ribs prominent, his skin pale again, his throat sounding congested and full of mucous, much like it had in the days when he was aspirating.  I have to admit that since Henry's diagnosis of FPIES, I have navigated the murky waters of this diagnosis with little guidance from anyone.  The doctors wanted to try Henry out on what is known as an elemental formula NEOCATE, as the start of an elimination diet, to basically take everything out of his system that might be damaging his gut and sort of give him a break.  The plan was, to be on the formula for a  few weeks and then introduce one food at a time.  This was the "idea" however, after just three days on the NEOCATE formula, Henry's stomach blew up like a big balloon, he looked like he was nine months pregnant and he was crying and burping all night and refluxing.  Then he had horrible blow out diarrhea.  Supposedly the formula was hypoallergenic, however, he was more ill appearing on it than ever.  I stopped it immediately and put him back on my homemade formula with a hemp milk base.  Apparently NEOCATE has corn it it, the doctors said it is so broken down that no one could react to it, but Henry did.   I have talked with mom's of other, not so typical FPIES kid,s who have reacted to it as well.  

Months prior to our diagnosis of FPIES an ENT surgeon had given me, what I felt was a devastating evaluation of my son.  After attempting to scope his airway and failing to do so, she told me bluntly.  "I don't know what your son has, he reacted to my instruments in his throat like nothing I've ever seen before.  His throat instantly swelled and closed and he stopped breathing.  It is not safe for us to attempt a surgical repair of his laryngeal cleft at this time, and I don't know if it will ever be able to be repaired."  She told me, in all her years she had never seen a kid swell that quickly and aggressively just by having her instruments in his throat.  She told me "He has some inflammatory disorder that has probably not been discovered yet, I'm an ENT so I don't know what he has, but I bet we are about ten to fifteen years out from understanding it."     Thankfully, Henry did not actually have a true laryngeal cleft.  However, his severe reflux, caused by FPIES, along with his strange anatomical laryngeal notch, mostly likely contributed to his aspiration and difficulty swallowing. 

Looking back on what she said, I think she was the only person who was forthright with me, by saying, he has something that we don't understand.   And it's true, FPIES is not well understood and that may be what has brought you here to this place of your own research and struggle to try to help your own child.   I agree with her perception that he has an inflammatory disease, because I see how after the wrong food is given he has sounds in his throat and then later diarrhea.   It is as if the entire GI tract is inflamed.

My son started out in the 30% for his height and weight and after adding solids he fell to just below the 3rd percentile, never to improve.  A few months ago he was starting to fall below that curve, not even on the growth chart.  He has NEVER been able to put on weight, even when I was controlling his calories with the G-tube.   No one has ever explained why this is.  However a few weeks ago the nutritionist we saw told me that children like Henry, have so much inflammation that they mal-absorb nutrition, they can't utilize the calories they take in. 

With him growing thinner, I felt sense of urgency to find a way to increase his weight and improve his nutrition, but how?   That desperation is what brought me to the book by Dr. Natasha Campbell-McBride "Gut and Psychology Syndrome."  The book makes mention that all diseases begin in the gut.   I have posted a link to the GAPS website, which gives some of the information about the diet.  I have to let you know that I myself took a year to research before I was ready to take the leap into starting my son on this diet.  The first phase involves making bone broths from chicken, lamb, beef, and yes even fish heads.  When I read that other mom's were doing this, my first inclination was horror.  I really didn't understand how this could work, I hate to admit it, but I wrote this off as some extreme experiment that I would never subject my child to.  I was worried that it was unsafe, as it seems the diet is mostly based on eating proteins and fat.  It just sounded like another version of the Atkins diet.  I worried it was some weird concoction of empty promises that was most likely deceiving these desperate mom's who were looking to fix their children.  I had tried the Atkins diet myself in college and I knew that it caused weight loss, and that was the opposite of what I wanted for my son.

I admit that I judged the program without fully understanding it.   Now that I have actually read the book, I understand the science and rational behind it.  It makes sense, and in fact, makes more sense than some of the things that doctors have suggested, which we tried, but which in the end did not work for Henry.  I am in no way telling you to abandon your doctors advise and jump in blindly.  However, wish it would be that Doctors would come along side mothers and would look at the entire body as a whole, that they would use nutrition to help heal the body.  Obviously we know that a person who eats vegetables daily is most likely more healthy than the person who eats donuts and cakes?  We see that one person feels tired and bogged down, while the other has energy to live life and thrive.  It makes sense, but why don't we think about these basic principles when treating patients with chronic illness?  FPIES certainly feels like a chronic illness at this point.

 Henry was refusing to eat anyway, so what better time to start him on broths.  The broths are intended, like the elemental formula to give the gut a rest.   I see now, how soothing a broth could be.  Think of how you want to drink them when you feel ill.   A warm chicken broth when you have a cold, or after the stomach flu when you are not yet ready to eat.  I went to Whole Foods and purchased an entire red snapper fish; head, bones and all.  I went home and threw it in a pot.  I cooked it for 20 hours until it fell apart, I freaked out my other kids by showing them the left over head in the pot.  When they asked what it was, I told them "dinner."  Man, I wish you could have seen the look on their faces!   Then I told them it was Henry's dinner!   The next day my friend called me and said she had some chicken feet I could use to make broth, wow who knew!

Basically, Henry has been taking several broths along with the meat that falls off the bones, I have also added several types of  winter squashes and non-fibrous vegetables.  He also seems to tolerate eggs, which I am extremely thankful for.   Do I know for sure that GAPS is going to fix Henry?   Well, that IS a question.  If by fix, we mean that Henry will be able to eat ANYTHING he wants, that he will have no restrictions on his diet?    Well, I don't know about that part.  Right now, I am not looking for him to be able to eat MORE foods, that is not my goal right now.  My goal is for him to be able to actually USE the nutrition from the foods he eats.  To actually be able to absorb the nutrition, to have energy and to gain weight and grow.  He may be eating broth and squash for a while, and right now, I am okay with that.  I see a difference in him already in just three  weeks.  He isn't feeling sick right now, he isn't having reflux, and he has a lot more energy.   He has actually gained back the weight he lost and would now be back to his third percentile.   I think we'll stay here awhile and let his gut just rest and heal.  We don't need to trial any new foods, we just need to enjoy this break he has from pain and discomfort.   I'll admit that this GAPS diet isn't for the faint of heart, but then again was FPIES?   So go ahead, give your local butcher a call and ask if he has any left over fish heads, or chicken feet, and save a few for me, I'm clean out! 

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.