A Cure for FPIES?

Doing the GAPS intro has definitely given me some insight into how Henry must have been feeling during those early days on GAPS.  I remember him being very quiet, tired and taking a lot of naps the first few days.  To be honest,  I didn't blog during Henry's introduction to GAPS because I was afraid.   I was afraid it wouldn't work, that he would loose more weight and I didn't want to blog about a failure.  I was afraid to start GAPS in the first place.  Henry's GI doctor had suggested an elimination diet and that I journal for a six weeks to try to determine what foods were causing Henry's FPIES.  We had reached a point in his elimination diet where we weren't making any more progress.  Henry seemed stable, but even though he was willing to eat some gluten free foods, he wasn't gaining weight.  His diarrhea wasn't as profuse but it wasn't completely resolved either.  His appetite was decreasing to the point that after a while it was a battle to just get him to take a few bites of any food, he even refused sweet foods like pancakes and gluten free donuts. 

I had heard about GAPS but I honestly was so skeptical.   Could I seriously take my already starving child and put him on just broth?  Of course I hadn't read the GAPS book, so taking only pieces of information I assumed the entire idea was ludicrous.  As a nurse, I even questioned the safety of such a diet on a young child.  Yet when Henry stopped eating all together, broth seemed like something more nutritious than water or pedialyte, I KNEW I had to do something, and I had to do it fast.  I read the GAPS book.

For those of you who are skeptical, I understand.  I can tell you what GAPS is not.  GAPS is not a FAD diet.  Contrast to what I originally thought, it is not the ADKINS DIET, which was sold as a high protein diet for weight loss.   The GAPS Introduction is not intended to be followed for life, it is a short term nutritional plan to help quickly heal and seal the gut lining.   After reading GAPS and following the program, I doubt that you will ever be able to go back to eating a processed diet full of sugar and boxed foods, but you will not have to follow the strict introduction diet indefinately.  It is suggested that the Full GAPS diet be adhered for six months to two years depending on what ailments you started with..   Now that we've been eating this way for ten months, the thought of eating processed foods at all makes me feel ill. 

If your child is failure to thrive or has  FOOD INTOLERANCE'S that are not true allergies, I can tell you that GAPS is the best answer.  Will it be hard for you to change what you are doing and start GAPS?  Yes.  But FPIES was harder.  Not having any safe foods to feed my child was much more difficult than putting him through the GAPS program. 

What did your doctor tell you that FPIES was?  Food Protein Induced Enterocolitis Syndrome?  What is enterocolitis?   Inflammation within the colon or because of the word "entero" the inflammation can be anywhere throughout the intestines or colon.   You see this first hand when your child vomits instantly after eating, or has diarrhea for days after, blood in the stools, or cries in pain when eating a benign food that a normal child should be able to eat.   This diagnosis of FPIES is sure to be a frustrating one.  If Food Proteins are causing this Enterocolitis in your child, what are you to do?  Every food has protein in it!   Some of you have tried the broken down protein formulas like Neocate.  Sometimes this calms the body for a time, unfortunately my son and many other FPIES kids cannot tolerate such formulas.   Why would a child react to even a hypoallergenic formula?  Because the FOOD PROTEIN is not actually the problem.  Your child's intestines, his or her gut is the problem.  Something is wrong inside.  The body tries to tell us, we put a food in, and the child instantly rejects it, either by vomiting, diarrhea or both.  The reactions to the food can be violent.

 Did you think about how  the same thing happens when you have a stomach flu?  Why is that?  There is a virus lurking in the intestines, causing inflammation and for about 24-48 hours most of what you put in comes back up, this is the bodies way of protecting itself, it rejects food and sometimes liquids.   Doctors call the stomach flu gastroenteritis.    Interesting, that word sounds a lot like enterocolotis, that "itis" part also means inflammation.  What do pediatricians suggest when you have the stomach flu?   That you rest the gut, start with small sips of fluid and eventually add probiotics into the diet to help heal the gut lining which has been attacked by whatever virus you had.   Sometimes after an acute gastroenteritis patients will develop an irritation of their stomachs that last for even a month after, it causes symptoms of reflux, heart burn and intolerance to certain foods?  Interesting how similar this seems to FPIES, only it is more temporary.

FPIES is like living in a constant state of gastroenteritis or the stomach flu.  Imagine the entire gut being inflammed all the time.  Or imagine how you feel when you have the stomach flu.  Do you feel like eating  much of anything?   Maybe you start to feel better so you try a bite of banana, instantly you have severe abdominal pain and then start vomiting.  Now you NEVER want to try a banana again, or at least for a long time.   Do you see how when you are in this state of inflammation NOTHING is easy to digest.  The food isn't the enemy, your GUT is.  You have to heal the underlying inflammation and sickness inside you.  Along with the inflammation inside of you,  your body has been also been depleted of the good bacteria that normally keeps the gut in balance.  Many things can cause this disruption in normal healthy gut flora, vomiting, diarrhea, the use of antibiotics which kill the good bacteria along with the bad, and other medications.   Even doctors suggest that you try increasing probiotics after a bad case of the stomach flu.  Why is this?  Research has shown that probiotics help aid digestion, decrease diarrhea and reflux and they are important to over-all gastrointestinal health. 

The GAPS diet is a nutritional program that is designed to first heal the gut, there is an introduction diet that is very strict, but so is an elimination diet or the limited diet you are now on because of FPIES.  The beginning stages of GAPS are intended to rest the gut, you are giving only things that are easy for the inflammed stomach and intestine to digest.  You avoid fiber, which as you can imagine is grainy and difficult to process when you have adhesion's and inflammation in your intestines. 

There is a huge focus on increasing the amount of probiotics that you are taking.  Not all probiotic supplements are the same.  A good probiotic should have at least 8 billion of bacterial cells per gram and have a mixture of several strains not just lactobacilli.  Many of our children have intolerance's to food so finding an allergy free probiotic can be a challenge.  We have found one we love called GUT PRO, the entire family uses it and I would suggest it as a place to start.  Probiotic foods can also be added into the diet to aid digestion.  The GAPS program suggests starting with a little sauerkraut juice first added to broth and slowly increase.  Bubbies brand makes both pickles and sauerkraut with live bacteria cultures.

Today I was speaking to FPIES, because it is on my heart and I know that many people are looking for hope.   My son Henry had numerous endoscopes, bronchoscopies, stool studies, allergy testing and the like.  We tried NEOCATE and could not tolerate it.  I came to the GAPS diet desperate to heal my son, not just put a bandaid on a growing wound and wish it would go away on its own.  The doctors ran out of ideas for his failure to thrive, even force feeding him through a G-tube didn't fix it, because he had so much diarrhea he wasn't absorbing any nutrients. 

There is a reason that Doctors do not understand FPIES and do not know how to treat it.  American medicine hasn't linked our diet to disease.  Some doctors understand a little bit of the connection, but not to the extent that is needed to help people with serious ailments.  Once a Russian friend of mine told me that in her country she had never gone to a doctor who didn't first ask her, what is your diet like?  I found this interesting that other cultures look at the WHOLE person, the diet, the enviroment ect.  Of course there are many enviromental issues that go into how our food is processed today, including mass production, GMO foods, hormones added to foods, and antibiotics.  Also, we are exposed to numerous chemicals and toxins in our every day enviroment that we aren't even aware of, her is a short film about the chemicals in our daily lives. 

Of date, there are no medications to specific to treat FPIES, although I believe they will try steroids in the future, because this is the way that medicine deals with inflammation in the body.  The only problem is that steroids have numerous side effects and actually decrease the good bacteria in the gut, encourage the growth of Candida Albacans or yeast, and decrease the bodies immune system and natural ability to fight disease.  Doctors hope you will grow out of FPIES but they don't understand why it is occurring in so many children. 

I find it interesting that most of us mothers of children with FPIES also have issues with our guts, either IBS, celiac, thyroid disease, PCOS, or various other autoimmune diseases.  Is it any wonder that we passed down unhealthy GI tract to our babies?  Also, due to many of Henry's early issues he spent his infant days on many antibiotics, steroids and breathing treatments, which though temporarily helped his symptoms, I believe damaged his gut further by upsetting the balance of good bacteria in his gut and lead to further inflammation.

Today the only evidence of Henry's past struggles with FPIES is a tiny scare on his belly, which he thinks is a second belly button.  It is the scar left from the G-tube, and it reminds me that all the efforts I made to find an answer finally paid off, that my prayers were answered and God lead me to find the GAPS program.   I can hear the skeptics calling out?   My kid is so sick, you have no idea what I'm going through.  You are right, I have not walked in your shoes.  But my son was very sick and I was once told that he may never be able to eat like a normal child.  I can hear the exhausted mothers saying.  "It's too hard, I just can't do one more thing right now."   

I know it's hard.  But you can do it, one step at a time.  If you can't do the introduction diet right now, here are a few suggestions.

Read the book on GAPS, arm yourself with some information, even if you don't do the full program you will learn about foods that can help heal and rest the gut.

Start your child on a probiotic, find a good one like I suggested above.
If you can't do the intro right now, try to just start by going gluten free and getting started on an elimination diet first if you aren't already and then try to go to the FULL GAPS diet which is less restrictive.

For FPIES, I believe if you really want to have full remission of symptoms and the ability to eat more variety of foods the GAPS Introduction and going through the stages is necessary to allow the gut to have a rest and to heal.

Is there a cure for FPIES?   For us GAPS was that cure.   I am happy to report that my son can tolerate many of the foods he could never eat before, he can tolerate milk in all it's forms now which previously caused vomiting, diarrhea/sometimes with blood, and becoming limp and lifeless.   'We've only been on GAPS for ten months.  Only a few months after starting GAPS my son was slowly gaining weight for the first time ever in his life and was not having reflux or chronic diarrhea as he had prior.    Please feel free to contact me with any questions and be sure to check out the GAP kids link.

I Made Curds and Whey

Who knew that Little Ms. Muffet was such a healthy little girl, eating her curds and whey.  I can only hope that someday soon little Henry will be able to enjoy the benefits that homemade whey can provide.

If you had told me a few months ago that I would be making this concoction myself I might not have believed you, it was only when I rigged some cheese cloth to dangle above my counter top that I sat back and laughed at the little house on the prairie-like-homemaker I have quickly become due to Henry's FPIES and our new GAPS diet!

You are mostly likely asking yourself at this point, why in the world would someone want to make homemade curds and whey?  Or maybe you aren't even there yet, maybe you are saying "what in the world is whey anyway?" 

Whey is the liquid that drips off of yogurt when you separate the liquid from the solids.   Whey contains pro-biotics, which are the good bacteria that your gut needs to fight off infection, digest foods and keep you healthy.  These good bacteria are depleted with the use of antibiotics or the insult from stomach viruses that cause vomiting and diarrhea.   You can use whey as a starter culture for your homemade yogurt, I have some brewing now.  You can also use a little whey mixed in fresh pressed juices or add it to your broth to add a pro-biotic to the liquids you are drinking.  I made whey mostly as a science experiment, and since my raw milk was tasting a bit sour,  I figured what the hey let's make some whey.  I would not recommend using whey if your child has FPIES to milk proteins as Henry does.  I made it so can use it myself, for my homemade yogurt and for my other children.

Start with raw milk, if you want to know about raw milk check out the Weston A. Price foundation which has lots of good resources about raw milk as well as eating a more healthy diet.   It seemed like it worked best when I used eight day old milk that was a little sour.   Right now I am trying to make yogurt from my fresh milk which was just delivered yesterday and it isn't curdling up like the older milk did.  Apparently you don't have to heat raw milk like you do pasteurized milk because raw milk already has it's own healthy bacteria in it which is not destroyed in the pasteurization process. 

To make whey I first warmed mine raw milk just slightly on the stove, you need to be careful not to overheat it or you'll have a mess on your hands.   After it's warmed, add in your started culture.   For half a gallon of milk you want to add about 1/2 a cup of yogurt, either your own or store bought, organic yogurt.   Mix it thoroughly.  I don't have a yogurt maker, so I just put mine in a stainless steal pot and covered it with aluminum foil.  I had preheated the oven so when I stuck my hand in it, it was just slightly warm.  I then left my stove just barely on, the first setting on my stove is 170, I put it just on, not near the 170, hoping the stove would be somewhere around the recommended 120 degrees.  I checked the milk frequently to make sure it wasn't getting to hot.   If you test it on your wrist it should be just slightly warm.   I have read that you can do the same thing in the crock pot and leave it on overnight.  I left mine in the oven for 24 hours.  I cannot be responsible for yogurt fires or worse, so I would recommend checking on this regularly and not leaving home for long.  Also, make sure your husband knows why the oven is just "slightly" on.  For some reason, the first time I tried this my husband did not know what I was doing.  You would have thought that he would have just shut the stove off or looked inside for that matter and asked me what I was doing.  He says he was washing the stove and "accidentally" turned the stove up to 170 degrees.  The result was overnight my milk burned to a chunky cheese like crisp, and thankful the house didn't burn down in the process, so be careful!

The first time I did this I didn't have a lot of milk to start with. The end product--yogurt--was lumpy and still rather liquidy, which I have been told happens often with raw milk because it is unpredictable as to what consistency of yogurt you will come up with.  That being said, if I ever perfect the consistency of raw milk yogurt, I will share the secret.

With so much liquid being present and not enough to feed the family, I decided to strain it and make my curds and whey.  This part is pretty easy as well as entertaining.  Just purchase some cheese cloth, you can find it at any grocery store, and line your colander with it.  Put it over a large bowl  so your liquid can fall through.  Put your yogurt in the cheese cloth and let it sit for several hours, the liquid will separate from the solids.

 

If you want to strain even further to really dry out the curds, then suspend the cheese cloth from something, have fun figuring that out and be careful!

 The end product is curds, which are like cottage cheese, only much better tasting, you can mix with salt, eat plain or mix in fresh fruit.  The whey will keep for several months and can be used to add pro-biotic to your drinks or as a started for your next batch of yogurt or curds and whey.   You can also use a little whey to lacto ferment your own fresh veggies or fruit.  So see how handy a bit of whey can be?   Have fun and enjoy!

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.