Our Journey with FPIES

This May 4th is the second annual National FPIES Awareness Day. I have previously written about Brook's full story here, but it has been over a year and a half since that post. For families of children with FPIES, a year and a half is a very long time. Living as an FPIES family is not easy, and one of the most challenging aspects is the lack of knowledge about this rare condition with no cure. I would strongly encourage people to share our story, as what we are going through may be similar to what someone else in your life is also going through, most likely undiagnosed. Help shine some light on the difficulties of diagnosis, management and daily life for families of FPIES children. I welcome you to share our story.  

To recap Brook's full story briefly, our 3 year old daughter suffers from a very rare, and very serious disease called Food Protein Induced Enterocolitis Syndrome (more commonly called FPIES for short... pronounced F-pies like apple pie). Less than .04% of children are diagnosed with this condition which falls into the "food allergy" classification. Basically, Brook suffers from a gastrointestinal allergic type of reaction to the proteins in foods. All foods with any trace amounts of protein in them are a potential risk for her. This means that even fruits and veggies are a potential risk. To make it simple for most people, we say "she's allergic to...." In reality, it's much more complicated than that. FPIES isn't like a regular food allergy. It isn't detected with a blood test. The only way to know what foods will trigger a reaction, is to give her each food on a special trial schedule, and watch and wait to see if she will get sick. Some families do this at a specialists office, but most are doing this on their own at home for every. single. new. food. they introduce to their child.

Because FPIES symptoms are different than regular food allergies, it is in that odd gray area for food allergy families. We don't use epinephrine (epipen) like other food allergy children (think of the classic peanut allergy child who swells up and can't breath). Those allergies are called "IgE allergies," where Immunoglobulin E reacts to foods in the blood. But FPIES isn't an IgE response to foods. FPIES is entirely gastrointestinal and is one of many autonomic nervous system dysfunction disorders. There is no cure for this disorder.

The symptoms fall into two categories: acute symptoms, which are the violent reactions that tell you something is definitely wrong (vomiting, diarrhea, blood or mucous in the stool, foul smelling stool, dehydration, lethargy, shock, weight loss, failure to thrive, hypothermia, hypo tension, abdominal distension, etc.) and then there are chronic symptoms that if you didn't know to look for them, would appear to be just an ill child or one that is "fussy." Chronic symptoms include poor sleeping habits (not just your regular 2-4 wake ups a night, but for us 10+ times each night for MONTHS on end). Chronic hiccups. Eczema type rashes. Sweating. Crying uncontrollably for no apparent reason. Arching her back in pain/discomfort like something is wrong with her stomach. Stomach distension. Moody/irritable. Many of these symptoms are easily overlooked. We didn't notice for months that something was wrong, even when Brook was reacting to her trigger foods through my breast milk.

FPIES sucks. There are a lot of additional demands it places on families, that take a significant toll on us emotionally, physically, and financially. Beyond the constant cooking everything from scratch, and spending significantly more money on fresh produce and groceries for specialty items, FPIES requires a lot of attention to detail and a constant vigilance. Products change, ingredients are changed for cost effectiveness all the time. Cross contamination is always an issue. In addition, FPIES takes some of the joy out of birthday parties, family holiday gatherings, get together events with friends and family, play dates, and really, any interaction where our children come in contact with other people. Imagine not being able to make a birthday cake for your child's birthday, or not being able to feed your child turkey on Thanksgiving. Allergic to corn, food coloring, or milk? Halloween just got a bit harder. Food is a major part of American holiday tradition, and FPIES makes it that much harder to celebrate. FPIES turns us into helicopter moms and dads (out of necessity). Toddlers will put anything into their mouth, and an innocent play date where my child picks up a stray rice puff off your unvacuumed carpet could mean hours of vomiting, a trip to the ER, and two weeks worth of painful bloody-mucousy diapers as a result. FPIES can make parents afraid of medical professionals who don't know or understand FPIES, who lob claims of Munchhausen syndrome, who call CPS and say that we're "starving" our children, who attempt to push protocols and treatments that put our children's lives at risk, or who don't take us seriously time and time again, because they think a medical degree means they know our child better than we do. Worse, are the stories we hear of FPIES ripping families apart from the overwhelming stress and financial burdens of being in and out of specialists and hospitals. Divorce is hard enough for families, but no one ever imagines the stress of dealing with a chronic medical condition with no cure could lead to the break up of a family. Yes, FPIES sucks.

FPIES makes us obsessed with what our children eat and their poop. Poop holds all the answers.... is she reacting? Check the poop. Should we pull the pineapple from her diet? Does the poop look "off?" What did we feed her today, was there anything new or different that she came into contact with? This poop is lime green and looks like someone blew their nose in it. Did someone accidentally give her something to eat at daycare? It looks like her poop is filled with spider webs. This diaper has blood in it... These are all real things we have said more than one time.

But for all the insanity, stress, and lack of support/information, our FPIES journey has been improving. We finally got a diagnostic code for FPIES in October of 2015. This is a huge deal when your child has a rare medical condition that most doctors haven't even heard of. It allows them to see that yes, it is a real thing, and that they can pull up information about it when you show up to the ER or urgent care. It improves our access to more knowledgeable care, and prevents mistakes from new healthcare providers when we see new doctors at the same clinic or hospital she has previously been treated at. 

In addition, it appears that we are one of the lucky ones. They say that about 40-60% (depending on the source) of children with FPIES will start to outgrow some of their food allergies between their 3rd and 6th birthdays. Brook has outgrown her allergies to carrageenan, turkey, oranges, and is showing signs of tolerating food dye. Of course, this still leaves us with FPIES reactions to rice, coconut, cows milk, salmon, shrimp/shellfish, venison, watermelon, and potentially pineapple (we're trialing this one right now and having some minor issues). Our doctors don't know if she will outgrow her reactions to all of her trigger foods, but we have hope that as she gets older, we will start to feel what it's like to be like every other family.... to be able to just grab food on the go without having to pack food everywhere we go; to not have to worry about sending her on a sleep over; to not have to scrutinize every ingredient in every item she eats. 

There are hundreds of blogs and stories from families trudging down the FPIES journey. Some are more horrifying than others, some will make you cry, some will make you laugh. One thing they all have in common? We want people to know what we are all going through, to understand and be empathetic to the challenges we face. We want your support in helping FPIES children and their families have their stories heard.

Children's Book for FPIES!

I'm so excited to share that families of children with FPIES, can now help teach their young children about the issue they're going through with a new children's book!  The link the the announcement from FPIES.org can be found here. Why is this so exciting? Because the book aims at teaching young preschool and elementary school aged children about what kids like mine are going through in a fun and entertaining way. In addition, the proceeds from the sale of the book go to support the International FPIES Association in supporting safety, education and advocacy for families living with FPIES.

Pursey's FPIES Surprise can be purchased here on Amazon. A great Christmas gift for little ones with FPIES, food allergies, or just to help explain what your child's friends might be going through!

GAPS Diet Protocol... What the heck is GAPS?!

I won't lie... the GAPS diet is not like a traditional diet. If you're reading this, chances are you found it by searching for GAPS diet in google. There really aren't as many free resources available out there as one would hope. And for parents who are on an extremely limited budget, with a child who has a medical condition that GAPS has been indicated to help... free can make the difference between success and failure. I'm writing this because I've now spent the last 5 weeks on the GAPS full diet (you're about to learn what that means) and will be gearing up to do the introduction diet for GAPS (wait, shouldn't it be the other way around?)

If you are new to my blog, I will give a very brief background. My two year old daughter has Food Protein Induced Enterocolitis Syndrome. In the easiest way to explain it, she's allergic to food. Her body can react to any and all things she sticks in her mouth, or consumes in any way. Many children who have this, will eventually outgrow it. But it can be painful, difficult to manage, and indeed life threatening if not managed well. We were pointed toward the GAPS diet as a possible way to help "heal" my daughter's gut, and reverse some of the symptoms and sensitivities her body has to foods. My daughter does not have a mild version of FPIES... nor does she have it as bad as some others. Many children who have this syndrome are only "allergic" to less than a handful of foods. We have 10 known food allergies at this time, and all new foods are strictly introduced on a special trial schedule. It can be exhausting. And as any parent of a special needs child can attest, sometimes you're willing to try anything if it may help make it easier in the long run. 

In addition to that, I have struggled with my weight and weight related health issues for several years. The GAPS diet has been indicated to help with these issues as well. I figured, what do we have to lose?

5 weeks in, and I am down 10 lbs. But cheating on this diet is not like cheating on weight watchers, or some other weight loss diet. I caved yesterday and ate pizza at the office. I was sick all afternoon and all night long. My body had detoxed off of grains and sugars, and the pizza just didn't sit well at all. I could feel it this morning too. I am now convinced that GAPS has had a positive effect on my body. I am sleeping better, feeling better, and have seen a decrease in anxiety/depression and in my weight, and an increase in my energy. I have no financial steak in whether you do this diet or not, I can only say that modern medicine has not helped us up to this point, but GAPS has. If you're tired of dead end roads with the medical community, having pills thrown at you to alleviate symptoms but  not the cause of your illness, and you're ready to make a change... what have you got to lose?

Bear with me while I attempt to give you as much information as I can in regards to the practical application of starting the GAPS diet. If you want the history of the GAPS diet, the full details, or more information on it, there are other great resources out there. Dr. Campbell-McBride has her own website, and there are many other good sites for giving you pieces of the puzzle for figuring out the GAPS diet on your own. Everyone tells you to buy and read her book, but if you're like me, and you haven't yet done it but want to make steps in the right direction... then read on my friend.

GAPS DIET

Basic Info:

•  This diet is designed to eliminate grains, beans, sugars, and starches to allow the gut to heal and the body to start properly digesting and absorbing nutrients the way it was intended to do.
• GAPS diet is a temporary diet, and the length depends on what you’re intending to heal. Usually a couple of months to two years in length.
• Is recommended to help with healing of a whole host of autoimmune diseases. Can be used for diabetes, autism, FPIES, IBS, chrones disease, ADD/ADHD, dyslexia, dyspraxia, depression and anxiety, schizophrenia, 
• Starts with a 6 stage intro diet (the hardest part) where you progress based on symptoms.
•  “Die off” is where the body may revolt a bit and you experience an increase in symptoms as your body detoxes during the intro phase of the diet. Once symptoms start to subside, you move on to the next stage or phase of the diet.
• GAPS does require you to do your homework and some prep work prior to getting started. It is possible to start eliminating some of the harmful foods now, but you’ll want to source or make some of the essential foods ahead of time (bone broth, fermented veggies or dairy, organic eggs, grass fed meats, etc.)
• The entire diet recommends organic and grass fed versions as much as possible to avoid the meat/dairy/eggs being contaminated from modern feeding practices of animals (penned up without proper exercise to condition the meat properly, the lack of fresh grass which is high in essential vitamins that end up in the meat/dairy/eggs, etc.)
• Many people prefer to start with the “full GAPS diet” until they are comfortable with what is going to be expected, get the hang of the cooking, gather recipes and source needed products/ingredients. We did this, and I feel like it was the best way to transition for us. We purchased a bulk beef package from a butcher shop, and managed to get meat and bones for stock donated by local hunters (due to my daughter’s medical condition). After figuring what store brand versions were easily accessible, and what we liked (Bubbies vs. Olykraut) we were then able to determine what we wanted to ferment on our own (youtube and blogs are essential, anyone can learn to do it!) This diet doesn’t have to be expensive. It’s all in the planning. If you take the time to plan, make a binder, and write your game plan down (including recipes, what is require of you during each stage, etc.) then you can easily do this on a tight family budget.

GAPS INTRO DIET

Tips:

     -   A cup of broth should be taken with all meals if not already broth based

     -    Probiotic foods should be increased gradually starting from a spoon or two of the juice, working your way up to the veggies, and then up to eating the veggies at each meal for about a half cup a day

     -    Work your way up to two eggs per day

     -     Any nuts used to make nut butter should be rinsed/soaked/dehydrated first to remove phytic acid (this can help with reversing tooth decay!) and make it easier to digest while healing your gut

     -   Fruits are essentially your “sugar” on this diet. So moderation is key. Eat them as snacks, or when you’re not fully hungry to limit yourself from eating too much.

     -     Fruits should be fully ripe when eaten to get the maximum nutrition and benefit to your gut.

Stage 1

•           Broth/Soup made from bone, meat or fish
•           Boiled meat (from the making of stock)
•           Non fibrous veggies cooked in stock until soft (think soup)
•           Juice of fermented veggies added to slightly cooled stock when ready to eat (sauerkraut juice)
•           Dairy based ferments (think live plain yogurt or kefir)
•           Ginger, mint or chamomile tea with a little organic honey

Stage 2

•           All in stage 1
•          Organic Egg yolk in soup (if no issues with adding this into your diet, you can then have soft boiled eggs)
•           Ghee
•           Fermented fish
•           Increased quantities of probiotic foods from stage 1

Stage 3

•           Everything from previous two stages
•           Ripe avocado
•          “Pancakes” made from nut butter, eggs and winter squash
•           Scrambled eggs
•           Sauerkraut and fermented veggies

Stage 4

•           Everything from previous three stages
•           Roasted and grilled meats
•           Cold pressed olive oil (not to cook with, but as a sauce or dressing)
•          Nut based breads (almond flour, eggs, and any winter squash)
•           Fresh veggie juice (start with carrot juice, you can make it or buy it)
• Start with a few spoonfuls on an empty stomach and work your way up to 1 cup a day.
•  After you’ve worked your way up without added symptoms, you can add other veggies one at a time (cabbage, lettuce, mint, celery, etc.)

Stage 5

•           Everything from previous four stages
•           Cooked peeled apple (cook in a bit of ghee!)
•           Raw veggies
•    Start by introducing softer parts of lettuce/peeled cucumbers.
• Move on to carrots, onion, cabbage, tomatoes, etc. when softer veggies are consumed without further symptoms
• Avoid any starch based veggie! No potatoes, yams, sweet potatoes!
•          Juiced apples, mango or pineapple (avoid citrus fruits) added to your veggie juice!
•  Make sure fruits don’t make up more than 50% of the mix!

Stage 6

•           Everything from previous five stages
•          Add in raw apple and other raw fruits (avoid citrus)
•           Make homemade dried fruits (store bought contains added sugar and preservatives) to add into nut breads!

Once you’ve done the intro diet, you can move on to the full version of GAPS! Yeah, you survived it!

Disclaimer

Memoirs of a Nursing Mother disclaims any liability or warranties of any kind arising directly or indirectly from use of this blog.  It shall not be held liable or responsible for any misunderstanding or misuse of information contained in “Gut and Psychology Syndrome” or for any loss, damage, or injury caused or alleged to be caused directly or indirectly by any treatment, action, or application of any food, food source, or dietary supplement discussed. Use of the letters "GAPS" in this blog are used as an acronym for Gut And Psychology Syndrome. All information contained in this blog is intended to support the book “Gut and Psychology Syndrome” by Dr. Natasha Campbell-McBride. The information on this site is provided for general education purposes only. It is not intended to be a substitute for professional medical advice, diagnosis, or treatment. I am not a medical doctor and cannot give you medical advice or a diagnosis. Always seek the advice of your physician or health provider. Never disregard professional medical advice or delay seeking it because of something you have read on this blog. Always consult your health care provider before making dietary changes. Links to external sites contain information created and maintained by other individuals and organizations and are provided for your convenience. I do not control nor guarantee the accuracy, relevance, timeliness, or completeness of this information. Neither is it intended to endorse any view expressed nor reflect its importance by inclusion in this site.  The use of any information provided on this site is solely at your own risk. 

A Different Path

As much as we do not consider B's allergies to be a disability, in essence, they are the very definition of a disability, as they are a physical impairment that significantly limits her ability to eat. We are living with a child who has a disability. She is not disabled. She is not broken. She merely has a disability. (I hope that makes sense). If she doesn't outgrow her food allergies by the time she starts kindergarten, she will be eligible to go on a 504 plan. This frightens me so much. As the stigma of being disabled, being different, is a burden for any child attending school. Fears of "food bullying" keep me from looking forward to the future. Often times, I feel robbed of the life I dreamed of having with my daughter. That is not to say, that she isn't perfect in every way I could imagine. We are so very fortunate to have such an amazing daughter. But it is very different than what I envisioned when we planned for her.

Robert Frost's poem, The Road Not Taken has always been one of my favorite poems. I taught it to students while serving in the Peace Corps, and portions of the poem have always resonated with me. Sometimes in life, we are forced to take the road less traveled by. In the case of parenting a child with severe food allergies, this is certainly the case. I recently read a blog post that struck me to the core. I feel compelled to share it with you, in hopes that I can explain what it's like being a parent to a child with food allergies.

WELCOME TO HOLLAND

by

Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

A Long Time Coming... part 2

Now, I had heard the term GAPS diet mentioned in the FPIES circle before. I only knew that it was even more restrictive than paleo, and that it involved bone broth, in a belief that one could potentially repair the damage in the gut, and heal the body from FPIES... how very little I knew.

It turns out, GAPS is also recommended by the Weston A. Price Foundation (a non profit org "dedicated to restoring nutrient dense foods to the american diet through education, research and activism.") The Weston Price Foundation believes that it's possible to reverse damage to many parts of the body through dietary changes. In a nutshell, it believes that the whole body is connected, and by not feeding the body properly, that many of our modern health problems can be fixed by reverting to more traditional methods of eating. This means eliminating sugars and grains, eating grass fed meats, and eating a diet rich in vegetables, bone broth and probiotics. As it turns out, many FPIES parents have significantly benefited from the GAPS diet with their little ones. For us, it was worth the shot to attempt it. If not to reverse or prevent further damage to B's teeth, then to at least help her get through the stage of her life where FPIES is the star.

We have now been on the GAPS diet for 3 weeks. I am also eating on the GAPS diet. We did not do the intro diet, as she is over the age of 2, and the intro diet is so restrictive that switching cold turkey would have made it too difficult for us. Instead, we are doing a closer version to the full GAPS diet. We eliminated grains, sweeteners (except raw honey which is allowed), starchy vegetables (like potatoes, sweet potatoes, corn, etc.) We have switched her back to goats milk (off of almond milk), added in fermented foods (like sauerkraut), fermented dairy (like kefir), bone broth, grass fed butters and animal fats, and more non-starchy veggies (like squash!) We can't do coconut, so coconut oil had to be set aside, even though it's permissible on GAPS. Instead, we are using olive oil (with low heat cooking or raw) or ghee (clarified butter) or grass feed butter for anything we cook with higher temps.

In this time, B has seemed to be doing a little better. She's had a very coincidental language burst, coinciding with some other odd symptoms that could technically be her body detoxing on the GAPS diet. We did discover a 5th cavity in her mouth as well, and we think the dentist just didn't see it the first time around with her squirming around during her initial visit. The second dentist confirmed that without treatment that she will likely lose the teeth early, and that it could potentially cause nerve damage and damage to her permanent adult teeth. This hurt. My heart felt like it was breaking, and I felt nauseous to think we would have to undergo surgery at such a young age with so many significant risks (FPIES and both the long term/general side effects of anesthesia on toddlers).  We have scheduled the procedure for the 10th of September, and hope to come through it without issue. In the mean time, we will continue with GAPS and hope to prevent any further damage to her teeth, and prepare her body for the harsh conditions of surgery. If GAPS makes any improvement for her, I will try to start regularly updating this blog. I wish that there was a handbook for parents of children with FPIES. It would certainly make things a lot easier on all of us to consolidate our collective wisdom.

On a personal note, since I've started GAPS (as long as I don't cheat) I have lost 4 lbs in three weeks. With no other changes. I am sleeping better, have less intestinal distress, and more energy than usual. Perhaps it's physiological, but as a skeptical person by nature, I'm inclined to believe that it's having at least some positive effects on my health if nothing else.

A Long Time Coming... part 1

I think about updating this blog all the time. With everything we've been going through for the last 10 months, it feels like an entire lifetime since I've posted. This post has been a work in progress for months. Let me start from October (the last time I posted)...

In October, B started an actual daycare. Our in home nanny could no longer care for her, and needed to move on to a full time job. My husband and I were extremely worried about how she would do in a daycare setting. After all, it's not like she can avoid people and foods for the rest of her life. We knew that snack time, lunch time, and sticky fingers would pose a risk, and did our best to find a daycare that could work with us. We were very fortunate to have found a brand new in home daycare run by two sisters who were just coming out of careers as pediatric medical assistants. They found they loved playing with the children and making them smile, much more than weighing them and making them cry while holding them down for vaccinations. The sisters turned out to be miracle workers. I can not imagine how much different our life would be right now without this daycare. Within days of starting the daycare, B started napping easily... in a well lit room. As it turns out, she didn't need the black out curtains, or the box fan running to help lull her to sleep after all. The sisters were knowledgeable about food allergies, and prepared for the worst. They worked with us to allow us to bring all snacks, breast milk, and lunch in a cooler every day. They would ensure that her high chair was disinfected from any possible cross contamination, and that she would be the only one that slept in her bed. Cleaning products would be allergen free, hand soaps allergen free, and she would have her own designated bottles, cups and utensils.

As time went on, B grew more social, and looked forward to playing at daycare with the sisters. She started putting herself to sleep for nap time easily. This allowed us to make the transition from a nightly routine of patting her back to sleep for 30-90 minutes in the dark, to putting her to sleep in the pack and play at the beginning of the night. Our new routine began in February, as B transitioned out of her side-car crib, and into the pack and play at night at home. It went surprisingly well. After a day or two, she understood the routine had changed. We no longer had to wait up until 11pm or later for her to start crying before we finally could come to bed when I went in to "rescue" her and comfort her back to sleep. (We were always so afraid that going to bed we would wake her while getting in... so we would just wait up for the first time she inevitably woke up). This grew into her sleeping longer and longer at the beginning of the night. I would still bring her to bed with me once she woke, but we were all starting to get more sleep. A few times she even woke and put herself back to sleep! This felt like heaven after 22 months of constant night watch.

By her second birthday, she had finally slept through the night a handful of times. It gave my husband and I hope that she might start outgrowing some of her sleep issues. And it began the process of night weaning. After turning 2 in April, she was no longer nursing during the days. In October I finally stopped pumping at work. We successfully introduced goats milk, which alleviated the burden placed on me to nurse. In the spring, she had switched to drinking raw goats milk and almond milk without carrageenan in it during the days at daycare. Almond milk was a blessing, as it was easily $15-20 cheaper than raw goats milk per gallon.

Not everything was all roses though. We failed a salmon and an orange trial during that time, which meant that I had to eliminate those from my diet too. I wasn't doing a traditional elimination diet. Instead, I had been eating what I wanted, and only eliminating known fails as we encountered them. In May, we also lost shrimp, food dye and watermelon in one fell swoop. A birthday party for my nephew at my parents house put B in contact to all three on the same occasion. It was heartbreaking to jump to 10 failed foods. We were now at the point of which children start to begin outgrowing FPIES, and here we were losing 3 more foods. At this point, she could no longer have rice, turkey, coconut, cows milk, carrageenan, oranges, salmon, food dye, watermelon, or shellfish of any kind.

None the less, we chugged on, and at her annual follow up appointment with her allergist, we finally had the discussion about re trialing failed foods. The game plan is to retrail her foods in order of least symptomatic to most symptomatic, with one retrial per month pending no other failed foods in between. This would mean 10 months to retrial everything, as long as no new fails or old fails occurred again. This, is literally my worst nightmare. Intentionally give B something I know makes her sick? That doesn't sound like my idea of a good time. We had almost started to feel normal. Our new normal was getting easier. I was managing to make the same meal for each of us at dinner, and rotating through a diverse menu of foods that seemed to be healthy. Her sleep was getting better and better, and now we were getting more nights where she slept through than not! To be honest, retrials scare the hell out of me. But fear or not, we have to retrial at some point, and with her losing more and more foods, it was time to see if any of the old ones were starting to clear up. This was a good thing... it forced us to retrial salmon, which ended up being her first retrial pass! We were back down, with 9 to go.

Last month we had her first dentist appointment. Since B was a gummy bear up until that point last year, we figured 13 months with teeth meant it was time for a check up. What began as a regular appointment for a toddlers first check up, began the start of another major life change for us. We found that with the gradual switch to almond milk, and no other major sources of calcium, that B's teeth were starting to decay. She has 4 cavities on the back of her top front teeth. This in and of itself, is heartbreaking to any parent. My barely 2 year old child has cavities! We know it's not from excessive sugar or not brushing, as she doesn't get juice or sugar like most children. FPIES ensured that those would not be part of her childhood. Upon further research of cavities in toddlers, we discovered that toddlers who subsist on almond milk often have early tooth decay. Almond milk contains phytic acid, which blocks the bodies ability to absorb nutrients. So the "50% more calcium!" claim on the box is misleading if the other aspects of the milk keep you from benefiting from any added calcium.

The worst part is, the dentist wanted to do the fillings under anesthesia at the local children's hospital. Due to her age, and her FPIES, the complications of allergies makes it much harder for a dentist to treat such a small child with that many cavities. I won't lie, I had a full blown anxiety attack. I broke down, I cried, I felt like my heart was going to explode from racing so hard. The side effects and lasting impact of anesthesia in children under the age of 4 are significant. They can be long lasting, and cause significant issues with language and intelligence development. These were not things I was comfortable with.

In my quest to find an alternative, I scheduled a second opinion appointment with another pediatric dentist (out of our network) and started searching for ways to stop cavities in toddlers. It was then that I ran across the GAPS diet.

Global FPIES Day - October 14, 2014

There are literally thousands of diseases out there, and after all the ALS ice bucket challenges, I know people are tired of hearing about one more cause... but today is Global FPIES Day. For me, this is one that hits close to home, because our 17 month old daughter suffers from a very rare, and very serious disease called Food Protein Induced Enterocolitis Syndrome (FPIES). I'm not asking anyone to dump buckets of water on themselves, or to donate money to any cause. This year, what I'm asking for, is for people to hear our story and be aware of just how complicated this condition is.

We are one of thousands of parents around the globe who's children suffer from Food Protein Induced Enterocolitis Syndrome (FPIES). We are certainly not worse off than some families with this condition, but we're far from being a normal family. FPIES is a condition where our daughter suffers from an allergic type of reaction to the proteins in foods. All foods with any trace amounts of protein in them are a potential risk for her. This means that even fruits and veggies are a potential risk. To make it simple for most people, we say "she's allergic to...." In actuality, it's much more complicated than that. You see, FPIES isn't like a regular food allergy. It isn't detected with a blood test. The only way to know what foods are dangerous for our daughter to eat, are to give her each food on a special trial schedule, and pray that she doesn't react to it. But when she does.... oh boy, it's rough. Really rough. To give you a general idea of what we've been through, I'll start at the beginning. Yes, this is going to be long.

Brook is our pride and joy. We were so happy the day she was born, and I couldn't have asked for a better experience bringing her into this world. From the very first weeks of her life, Brook was a great baby. She didn't sleep great, but what baby does? She had crying periods, but not too bad. She loved to be held all the time, and would get super sweaty. She loved to be in just a diaper being held in front of a fan. Our little "northern" baby as we liked to joke. As the summer finally started to come, my mother in law came to stay with us for the summer. It was a relief to have help, as my husband was working graveyards, and as most people know, a new mommy doesn't get much sleep. Brook began to have crying jags, where she would just cry miserably, and so loud it was concerning. Which was odd for us, since she usually doesn't cry. Everything else seemed fine though, and all of her doctors appointments they said she was perfectly healthy, that it would just pass. Likely a little cholicy. At a few months old, we had a couple bloody diapers, and mucous in a few. We figured she was sick, and the pediatrician said she probably strained too hard. (If this is too much for you, I apologize, but baby poop is literally the center of our lives as FPIES parents, you'll understand why soon.)

By 6 months old, we were ready to introduce Brook to solid foods! I had been nursing exclusively up to this point, around the clock on demand. The break was to be a welcome one. We decided to try a "super food" and introduced avacado first. She didn't want anything to do with it. After several tries, we gave up since she wouldn't even swallow a bite. It's a good thing though, as we would later find out that avacado is one of the high risk foods for FPIES babies. We moved on to rice cereal, the classic standby "perfect first food." The first time Brook ate rice cereal, she did fine. She only ate a bite, so she seemed like she was able to tolerate it. The second day also went fine. On day three, about three hours after she ate it, she went to bed for the night. I of course, was still nursing her to sleep at this point. She was almost asleep, when she then projectile vomited all over me, the bed, and herself. Poor baby, she was miserable. Daddy held he for clean up, and about 20 min in, she proceeded to vomit again. Just the two times. Mind you, she had only had maybe 2 tsp of rice cereal, if that. I figured that her tummy was full, and that the nursing was just too much. We took a break from solids for about a week until her tummy seemed to go back to normal.

The next time we gave her rice cereal a week or so later, it happened again. So we took her to the pediatrician, and were told that she had a stomach bug. That she'd be fine. So we waited, and gave solids another break. Again, the next time we gave her rice cereal she projectile vomited. But this time, she had eaten quite a bit, she was now 7 months old. She proceeded to vomit every 15-20 min for about 2-3 hours. It was horrible. Like something out of the exorcist. (Really, if you imagine an infant going through a forceful choking vomiting session, it's NOT funny.) While holding her at the pediatricians office, she kept vomiting while we tried to find out what was going on. This time, the urgent care doctor thought she might have pyloric stenosis (where the lower part of the stomach narrows and becomes blocked by an enlarged muscle, causing a back up and not letting the food through the stomach into the intestines... it's more complicated than that, but needless to say also very scary). It would require surgery if she did indeed have it. We made a follow up appointment the next day with our pediatrician. He was well aware by now that we had been going through this on a regular basis. He had a different opinion though. He said that we might be looking at something called "FPIES" (pronounced F and pies like apple pies). Simply put, stop giving her rice cereal and move on to something else. If she does it again, we'll look into pyloric stenosis. If not, then she's basically "allergic to rice."

So we did. We moved on. We stopped giving her rice cereal. Her pediatrician gave us a hand out at her appointment saying that children this young are too difficult to test for food allergies, and the best solution is to just avoid the food. The hand out indicated that FPIES was tricky since it couldn't be tested by blood, but mostly by clinical observation of the symptoms. There isn't even a current diagnostic code for physicians to use. (It will be coming out in 2015!!!) And many pediatricians have never even heard of FPIES.

So we were careful moving on to new foods. Giving each new food careful observation when introduced by itself where nothing else new was given at the same time. She went from 7 months to 12 months without another reaction. It is so easy to feel like maybe it was all a mistake, or that nothing is really wrong with your child when you don't see the bigger picture. To be honest, I feel like a jerk. I didn't put the time and effort into researching FPIES and how to manage living with it, until we got her next failed food.

I went to visit some friends, and while I was out, I didn't think anything about letting Brook sip some coconut water from the bottle I was drinking. She'd never had it before, but I didn't think that a liquid could even pose a threat. That same day, she had turkey for the first time. That night about 8 hours later, she woke up projectile vomiting all over everything and everyone. It lasted for hours. HOURS. Every 15-30 min for about 5 hours straight. It was horrible. She wouldn't eat after that. She went a week without eating any solid foods at all. She would only nurse. I had once again become the sole source of her sustenance. She lost 2 lbs in a week. That may not seem like a lot, but when you only weigh 20 lbs, it is a considerable portion of your body weight. To make it worse, for two weeks following her violent reaction, she had horrible diapers. Mucous and a host of other issues that I won't go into. We went through a case of diapers in two weeks. I felt so confused. I didn't know what caused the reaction... the coconut, or the turkey?

I finally kicked myself into gear, and made a follow up appointment with an actual allergist and started doing the research I should have done months before. Her allergist was amazing. She answered all of our questions, and scheduled Brook right away for blood tests. She was too little for a skin test, so they needed to rule out any "real" allergies (the type that show up on a blood test). These tests are for Immunoglobulin E reactions to foods (IgE) and measure the blood level of IgE in response to common food allergies. The IgE antibodies are proteins made by the immune system that attack antigens, such as bacteria, viruses, and allergens. So the more there are, the more likely you are to be allergic to something. But FPIES isn't an IgE response to foods. FPIES is entirely gastrointestinal and is one of many autonomic nervous system dysfunction disorders. This test, would tell us if she had regular food allergies (the kind you treat with an epipen).

The tests were horrible... three people holding her down while screaming as they missed the vein over and over again at two different labs. After an entire morning attempting to draw blood intravenously from our poor 13 month old, they were finally able to complete the test at the children's hospital by taking it from the vein in the back of her hand. The test came back negative for everything. This was good. This meant we didn't have any IgE mediated allergies... no allergies requiring an epipen, and narrowed it down to FPIES. The specialist then met with us for a follow up, to discuss food trials for an FPIES diagnosis and how to proceed moving forward.

There are two groups of symptoms for FPIES. Acute, which are the violent reactions that tell you something is definitely wrong (vomiting, diarrhea, blood or mucous in the stool, foul smelling stool, dehydration, lethargy, shock, weight loss, failure to thrive, hypothermia, hypo tension, abdominal distension, etc.) and then there are chronic symptoms that if you didn't know to look for them, would appear to be just an ill child or one that is "fussy." The chronic symptoms were the ones we knew nothing about. Poor sleeping habits (not just your regular 2-4 wake ups a night, but 10+ each night for MONTHS on end). Chronic hiccups. Eczema type rashes. Sweating. Crying uncontrollably for no apparent reason. Arching her back in pain/discomfort like something is wrong with her stomach. Stomach distension. Moody/irritable. In other words, the symptoms of FPIES had been staring us in the face since the early months after she was born.

As it turns out, Brook has been reacting to the foods that I am eating, through my breast milk. So, I stopped eating rice, turkey, coconut. She started sleeping slightly better. (Not great, but better). She was happier. Things were looking up. Each new food goes through a full two week trial period. She has to trial the food for a full week, then take a short break of three days, then three to four days on again. If she reacts with any acute symptoms, we have to pull the food. If she reacts with two or more chronic symptoms, we have to either push through the pain or pull the food. To make it even more complicated, and here's the real kicker, FPIES has a nifty little trick where if she fails a food (has a reaction) or becomes violently ill with a gastrointestinal sickness, any of the safe foods prior to that time can now pose a threat again. The lining of the intestine basically makes it fair game for reactions again. This is maddening for a mom who wants to wean her toddler on to solid foods. It's like Russian roulette with food.

Since that time, we've discovered she reacts also to straight cows milk (but not to yogurt or cheese, since the proteins in them are broken down enough to not trigger the FPIES symptoms) as well as carrageenan (it's derived from seaweed and in almost every dairy product you can think of). Needless to say, cutting out rice and cows milk are the two hardest for me.

Eating out poses a threat. Eating from anywhere that I didn't make the food myself poses a threat. Did you know that restaurants often put rice in the salt shaker to prevent clumping? Or that pasta, french fries, bread, and other common carb foods are often coated in rice flour to prevent sticking? It's not on the label either, since it's not an ingredient IN the food. Not to mention how dairy is in everything... Reading the labels on foods is not enough. You can see now how FPIES can make eating a stressful event. Many parents in the FPIES support network talk about what we call "accidental exposures" from foods that don't fully list the ingredients. Turns out Brook reacts to rice based maltodextrin too. We quickly found out that taco seasoning contains maltodexrin from one of my favorite places to eat. Rice vinegar, rice flour, rice based maltodextrin... you can see how anything derived from one of her many allergies can become another food she can't eat. In addition, FPIES has shown that if you react to a specific food (like rice for example) that you're likely to react to other foods in that same food family.... so for us, grains are a high risk food. Since she failed turkey, poultry meats are a high risk food.

It's hard enough getting a toddler to eat, let alone having them only eat off of a pre-selected menu of fruits and veggies. (Try to imagine getting a toddler to eat broccoli every day for two weeks!) I can't just feed my kid something on the go. Any time we go anywhere, we have to plan to feed her. Even if it's not a meal time, we have to prepare to have a snack ready. I have to follow her around making sure that she doesn't grab a potentially unsafe food from someone else, or off of the floor. Toddlers put everything into their mouths. Unvaccuumed floors are dangerous for kids with FPIES. I have to be careful not to eat anything with her unsafe foods as well since she's still nursing. This makes family gatherings, parties, and holidays much more difficult for us. On top of all this, I get "the look" from people because I'm still breastfeeding a 17 month old. Yep, I've got reasons I just don't feel like telling every person in the world about. I'm doing what I have to do, to keep my girl growing and fed.

We are lucky in some respects. There are families out there with NO safe foods, where their little ones react to every solid food they have tried. These same children get put on horrible tasting elemental formulas or IV drip feedings. The icing on the FPIES cake is that this disease is misdiagnosed, and often unheard of by many pediatricians. Children can go months, even years, without proper medical attention and care. We were lucky that our pediatrician had heard of it. Most children will outgrow this. Some will not. For now, please just know that if you invite us over and we decline, it's not you, it's FPIES. I know this was a book, and that most people won't read all of it. But if you did, thank you for taking the time to try to understand what we are going through. Today is Global FPIES Day. This is the one day of the year where I will openly post about this to let people know what Brook is going through.

Videos to watch for more information:

FPIES, A Rare Food Allergy

Our Superhero: Cohen's Story (Super Cohen's Crusade for FPIES)

Jack's FPIES Reaction to Soy

Zac in a Play Area

Zac's Chronic Reaction

Paizlee's Goldfish cracker FPIES reaction

FPIES on Ricki Lake!
FPIES: A Conversation with Dr. Anna Nowak

Links for more information about FPIES:

Research Updates on FPIES

FPIES Foundation

FPIES Eyes

Cradle Rocking Mama (Blog - FPIES)

Bullfrog and Butterflies (Blog - FPIES)

F U FPIES (Blog - FPIES)

FPIES and Mud Pies (Blog - FPIES)

Our Mack Attack (Blog - FPIES)

Our Lives and FPIES (Blog - FPIES)

Trials and Triumphs of Nicole (Blog - FPIES)

My Little Pie with FPIES (Blog - FPIES)

The End is Near

We're about to get really real in here. Let's talk nipples. Yep, I'm going there. In the last 16+ months, I have had a few times where nursing has been horrifically painful. The first weeks, which is natural as the body adjusts and your nipples get calloused and toughen up for the year ahead. Then when I had a milk blister. It was horrible, and you can read all about them here (http://kellymom.com/bf/concerns/mother/nipplebleb/). Again, when she went through a growth spurt around 9 and 12 month marks. Now, at 16 months, I fear my child is trying to bite my nipples off.

She is both teething with a molar and must be going through yet another growth spurt at the same time. I'm bleeding, cracked, and the skin is literally peeling off the tip of my nipples. The outer later of skin on the tip of the nipple has turned white around the edges of the bloody scabs and I have teeth marks that are not fading or going away. She's been latching funny lately, and is "nipple nursing" where she only takes the nipple just between her teeth, and sucks so hard while biting down with both the top and bottom teeth, that I feel like I've had my nipples in a vise. I imagine the sucking sensation helps alleviate the pressure in her mouth from the molar coming in.

To make it worse, since this has now been going on for 6 days, the breast tissue around the nipple is so sore that wearing a bra is painful. Wearing anything is painful. But, I can't parade around without one at work, or even at home (she'll then think it's time to nurse). The pain is so severe, that I have lost the ability to tell if it's from the raw skin, the teeth, or just from the bruised breast tissue. I can no longer distinguish if she's nursing correctly, or not. It feels like white hot lightening every time she latches, and like I'm being electrocuted throughout the nursing session. The nights are the worst, since she still wakes frequently, refuses to go back to sleep without nursing, and wants to stay on the breast for hours at a time.

I have come to the very sad conclusion, that this may very well be the end of breastfeeding for me. I had hoped to let her self wean, which had been going well, especially with me at work 40 hours a week. However, I had planned to keep nursing her to sleep, and upon wake up, as long as she wanted it (and wished that she'd just start sleeping through the night and not need to nurse to go back to sleep). Clearly, that isn't working out. The pain is too intense. When you're crying while nursing your child to sleep, trying to bite back any sobs of pain so that she'll just. go. to. sleep. Then you know you are in a losing battle. I'm so not emotionally ready to be done, but I think physically I'm at the end of my rope.

Going Paleo

With our daughter's food allergies becoming more and more evident with every new solid food we introduce, we are clearly in need of drastic change in our diet. Since I'm still nursing, that means I've had to cut out rice (and all rice derived foods including maltodexterin), turkey, coconut, cows milk and carrageenan. Foods that contain these in any form trigger her FPIES, and make it so that she has a miserable time (and potentially weeks of pain). Her poor little tummy can't take it. So that means mommy needs to suck it up, cause if you can't beat 'em, you have to join 'em. 

We've decided to go Paleo. Yes, I'm well aware that the "Paleo Fad" has it's ups and downs. My husband and I have put a lot of time and energy into reading up on the Paleolithic diet (Paleo for short) over the last few weeks. Given the FPIES confirmation from her allergist, the Paleo diet seems to be one of the healthiest options for cutting out potentially hidden triggers that are in almost all foods in the United States. Paleo will allow us to cut the crap (pardon my language) without cutting out nutrition. 

This means we are now a dairy free, grain free, and sugar free home. We've started making the transition slowly into buying grass fed organic meats (hey, I'm not stupid, I still have a freezer full of chicken I know she can eat that we will continue to use until it's gone.) We've stopped buying noodles, potatoes, corn, and bread. We have started making sure every meal has lean proteins in moderate proportions with plenty of veggies. We've made sure we have a balanced intake of fruit so that we don't end up with any issues with excess fructose. We've started snacking on nuts and seeds (limited since they are high in fat). It's been 4 days and I'm already feeling a difference. So far, it hasn't had a direct affect on my milk supply.  

In regards to paleo and nursing, they can be very compatible and clearly mankind survived and thrived from the cave man time, so they must have been able to produce milk just fine on a more natural diet. However, any body that makes a change this drastic will likely see a dip in supply. As a result, I'm planning to make sure to do the following:

1. Keep my water intake high. I already don't drink soda, juice, coffee, or any caffeinated drink, so water is my main go to. Now that I'm cutting out milk, I'll be making sure to replace my milk consumption with water.

2. Snack! One of the best parts about the paleo diet, is that it doesn't claim to be a diet, but a lifestyle change. This means that you aren't supposed to be hungry. If you're hungry, you're doing it wrong! So when I get hungry, I have a light snack... fruit, nuts, seeds, veggies, dried fruits, home made lara bars.... I'm learning that I love almond butter on celery or apple slices!

3. Perspective: This is not a no carb/low carb diet. I'll be eating healthy carbs (not those nasty starchy, processed carbs that my body clearly can't handle well). Fresh local fruits and veggies. Plenty of squash and yummy sweet potatoes. I'll be replacing the bad fats I had been eating, with good ones that will add nutrients to my milk supply.

4. Continue to eat galactagogues: I'll be eating ones that are Paleo. (Nuts, flax, fennugreek, dark leafy greens, carrots, tahini, garlic, papaya, asparagus, figs, apricots, dates, salmon!)

But what about your daughter, isn't she going to starve, surely every child needs grains!? (I hear you asking this!) There are a lot of things about our daughter that aren't in line with what you would need to feed a typical toddler. Grains cause her considerable pain and a wide variety of symptoms. As a result, we have to be creative, and make sure to provide the maximum nutrition to her as possible. Even without going paleo, her diet is already severely restricted. This diet just ensures that I'm eating foods she can eat safely through me, and that she's eating foods that are free of processed ingredients. 

This means I'll be continuing to breastfeed on demand throughout the night, and then three times a day (wake up, mid-day, and before bed) in addition to the solid foods she gets. I'm continuing to pump during my lunch break at work so that I can ensure she has a bottle for nap time when I'm at work. Don't worry, she'll be well fed, but allergen free. Some of the best benefits of paleo for children with FPIES can be a decrease in gas, rashes, hiccups, general stomach cramping, and better sleeping! (Oh God, that last one sounds sooooo good.) Essentially, it's worth trying since what we're currently doing hasn't been working. 

FPIES Sucks... A lesson in accidental exposure

As I’m beginning to learn, FPIES really sucks. Last night we had an accidental exposure to rice. We thought we’d be safe going out for fast food, and just ordering something that didn't have rice in it. Well, apparently, after calling the company HQ and asking for a breakdown of the ingredients in the sauce, rice flour is used in the making of the flour tortilla we ingested (edit: and found out the maltodexterin was rice based as well). My poor baby had a very bad night. Took almost 2 hours to go to bed (when she was clearly tired), was overly fussy, woke up about 20+ times, had gas and tummy pain throughout the night, and hiccups on and off all morning. Needless to say, I feel guilty not being as vigilant as I should have been. I feel terrible that I was too tired to cook, and the shortcut came at the cost of our daughter’s comfort and health. Unfortunately, today was supposed to be day 1 of the break in our corn trial, so now I might get mixed symptoms when we start back up in a couple days. This contamination thing is no joke. If I eat rice, or anything with rice, she gets it through nursing. If she eats rice, or anything with rice, she gets sick. It just feels so very unfair to see her go through this over and over again.

Our follow up appointment is coming up next week. I feel very frustrated and at a loss for what to ask the allergist. Where do I even begin? I feel like I don’t even know what to ask. This feeling of being helpless is frustrating, and makes it hard to enjoy “living in the moment” with my sweet little girl, when all I do is stress about her food… is she getting enough, too much of what she can have, are we causing eating problems in the future, will she have weight issues, will she have food aversions because we limited what she could eat at such a young age, will she gain weight, lose weight, ever stop nursing….. not to mention all the questions about trying to understand her condition, and what it is we should be doing to help her. Today is just a frustrating kind of day.