… how many of us would sign up?
Raising “normal” children to adulthood is worthy enough of sainthood, but add to that a child with special needs and you will find some of the toughest, most courageous, and inspiring parents on the planet.
Take for instance Nichole Sawatzky, whose daughter suffered from FPIES – Food-Protein Induced Enterocolitis Syndrome – described by some as food allergies on steroids.
Conventional doctors sometimes refer to FPIES as the “other” food allergy, a digestive disorder with the potential to turn an entire household upside down. Today’s babies and toddlers are suffering its devastating effects at a growing rate that has many experts alarmed.
Nichole knows about this all too well.
Nichole successfully nursed her second daughter Ellie through FPIES, and then out of it and back to health via the GAPS Diet, a healing protocol which rebuilds the gut wall and microbiota. (1)
Here is Nichole’s take on being an FPIES mom. Be sure to keep reading for the good news because, yes, FPIES can be healed no matter what your conventionally minded doctor may be telling you!
“You know you are an FPIES mom when ….”
1. You are covered in vomit from head to toe, you are mentally noting how it smells for documentation purposes, and it is all in a day’s work.
2. You tell people that your child has an ‘extremely rare immune systems DISEASE’ and don’t tell them it isn’t contagious because you are tired of explaining what “it” really is, and their reaction can be somewhat fun.
3. You find yourself wishing someone gave out honorary medical degrees.
4. You have to trial a band-aid.
5. You hope it is ‘just’ a virus, or a cold, or an ear infection, or…….
6. You have a dated portfolio of poop pictures.
7. You understand acronyms such as MSPI, FPIES, PIC, and EE.
8. You need a t-shirt that says “Please don’t feed the child”.
9. You have a spreadsheet on your fridge to record food eaten, time eaten, amount eaten, and if any vomiting or poop episodes followed.
10. You view words such as anal, or obsessive compulsive, or overprotective, or helicopter parenting all completely blase’, and replace them with expressions like ‘do you mind if I vacuum your floor’? or ‘she will have ice chips with that’.
The remainder of this article delves into how to resolve this difficult condition called FPIES that is mostly (but not entirely) restricted to infants and toddlers. You don’t have to simply manage and resign yourself to living with it – you can heal it!
This article is not intended to be medical advice. Please consult with your own health practitioner concerning your family’s health choices. An FPIES method of doing the healing GAPS™ Protocol may prove of help to you. Many FPIES families have found restoration of their little one’s health and a healthy family life, through GAPS.
What Exactly is FPIES?
FPIES is short for Food-Protein Induced Enterocolitis Syndrome. It is a non-IgE mediated reaction in the gastrointestinal system, not a classic allergy that can be alleviated by things like an Epi-Pen. Some may also call it Allergic Colitis.
In short, an FPIES child can be hyper-sensitive to…FOOD, in particular, foods that are capable of causing intestinal injury.
When an FPIES child eats an unsafe food or even mouths an unsafe substance (like a speck of unsafe food on the floor or a newspaper printed with soy ink) there is usually a delayed reaction (2 – 4 hours) before symptoms begin with a vengeance. Reactions can take weeks to resolve.
An FPIES reaction can look like this:
- Possible fatal shock
It is not yet known how common FPIES occurs in the population, but its incidence is growing.
Australia seems to be the first country to be conducting a national disease register for FPIES. Preliminary numbers suggest “the incidence of FPIES to all food triggers was one in 10,000 infants less than 2 years of age”, but those numbers are suspected to be underreported. [Source]
Conventional Medicine’s Answer to FPIES
It probably comes as no surprise that modern medicine currently has no cure to offer to an FPIES child. Often, if a baby is having trouble even with mother’s milk, the typically suggested food for FPIES infants is an elemental formula.
Finding the right formula may also be a trial and error process, and there are different tiers of processing and pricing depending on how “elemental” it is, and whether it can be sourced from a store, or if it has to be pharmaceutically prescribed. Price tags range from $27 – $50 per can, a huge financial burden to complicate the already ever-present stress of a sick child. Formula brands typically recommended or prescribed are Alimentum, Neocate, Elecare, or Nutramigen AA.
It is critical to note that elemental formula does not fix the root issue, but only manages it on a short term basis. Worse, the many overly processed and synthetic ingredients in these formulas often make an FPIES situation worse over time.
Before, or concurrently to, a family getting to this point of finding a “safe” formula for an FPIES baby, they have often gone through a battery of tests and invasive procedures, wrestling matches with insurance companies, keeping meticulous daily records, cleaning the house to make it safe, cleaning up vomit, cleaning up diarrhea, explaining to doctors/family/friends, researching late at night for solutions, and struggling with ever-growing medical bills.
FPIES: A Different Approach (that works!)
I mentioned GAPS™ before and perhaps you are thinking “There are a lot animal foods on the GAPS diet…shouldn’t I be concerned about introducing this diet to a baby or toddler with Food-PROTEIN Induced Enterocolitis??”
To quote Natasha Campbell-McBride MD, creator of the GAPS Protocol:
“Infants grow very quickly, so their bodies need a constant supply of building materials to build their brains, bones, muscles, and other organs. The best quality building materials come from animal foods: fresh meat, fresh fish, eggs and good-quality organic dairy. Plant matter is difficult to digest and does not really feed the body; plants are primarily cleansers and provide some energy. Many plants, particularly grains, also have anti-nutrients in them which damage the gut lining. It is because of the misguided dogma of weaning infants onto grains that they develop leaky gut and start reacting to proteins. Please, read the chapter on New Baby in the GAPS book on how to wean an infant.
A good example is FPIES (Food Protein Intolerance Enterocolitis Syndrome), a fairly new diagnostic label which is given to an increasing number of infants today. These are infants who develop severe digestive symptoms and are found to be ‘allergic’ to all protein on the planet. The standard medical advice is to avoid all protein-containing foods. I have a growing number of FPIES patients who recover beautifully on the GAPS Introduction Diet.” (2)
GAPS has been working beautifully to recover FPIES children. However, there are some important adaptations that Dr. Natasha makes for FPIES patients, and these I will lay out below.
I encourage you to seek out your own answers and do your own research. Find success stories, because they’re out there. GAPS classes are an option and are available at this link if you would like formalized instruction and coaching on how to proceed through the healing process.
Success with an FPIES situation will be hard-won, but your own success story is waiting to be written. Dr. Natasha encourages parents to trust their special connection to their children and to listen to their parental instincts in their role as caretaker.
Transitioning Your FPIES Baby or Child onto GAPS
Taking your time is imperative to transition your child slowly to GAPS. The steps below serve as a guide but take longer with each step if necessary!
OPTION 1: IF BABY IS ON FORMULA
Set a goal to wean off of formula and other artificial substances as soon as possible, as they perpetuate the damage in the GI tract. Formula will be replaced by homemade nondairy formula and meat stock, and constipation aids can be replaced by gentle enemas.
Step 2 (Day 1)
Make a VERY clean (organic & grass fed, or wild caught) meat stock and start feeding 4 – 5 teaspoons (or less if needed) of the meat stock EVERY 1 – 2 hours EVERYDAY. As you start feeding your baby the meat stock, reduce the formula amount accordingly.
- Lamb meat stock is the cleanest, but stock can be made with either organic chicken & giblets, organic lamb, wild caught fish, or beef with bones.
- Important!! Don’t remove the natural fat that accompanies the stock, this is very important to your baby’s healing.
Step 3 (Approximately day 2)
Introduce a DROP of cultured cabbage juice to the meat stock and ever so gradually, increase to 2 – 3 tablespoons with each meal. This is made by juicing real, live sauerkraut, preferably an anaerobic sauerkraut.
Increase the meat stock amount gradually as you incorporate the next steps. Let your baby’s reactions guide you in how slowly or fast you increase stock and cabbage juice.
Step 5 (Approximately day 3)
Add gelatinous meats to the stock by pureeing with a blender.
- lamb: shanks, neck bones, riblets, organ meats
- beef: marrow, shanks, oxtail, neck bones, organ meats
- chicken: skin and connective tissue (can be blended together to form a “pate” that can be added to the stock), organ meats
Increase the amount of gelatinous meat and soft tissues, blended with the stock, until the stock has become “porridge” consistency.
STAY on Step 6 until your child has gained weight and stomach pain is gone.
*Note – the only supplement that your child should be taking is a very clean probiotic with no fillers, and it should be titrated up from a very tiny amount.
SKIN SENSITIVITY TEST clean, raw egg yolk. This is how the skin sensitivity test is described in the GAPS™ book – Take a drop of the food in question and place it on the inside of the wrist of the child. Do it at bedtime. Let the drop dry on the skin, and let your child go to sleep. In the morning check the spot: if there is no reaction, then go ahead and introduce a tiny amount of egg yolk into the child’s meat stock soup. If there is an angry red reaction, then there is a sensitivity. In that case, hold off on egg yolk and try introducing at a later time.
If egg yolk is tolerated, work up to 3 – 4 raw egg yolks per day.
SKIN SENSITIVITY TEST clean, raw egg white, and serve along with the egg yolk.
SKIN SENSITIVITY TEST clean, raw, homemade, 24-hour goat’s kefir. Start slow and gradually. Don’t rush this part. Start with 1 – 2 tsp for 5 days, and then double to 2 – 4 tsp, and so on.
Continue on stock/gelatinous meats/eggs/goat’s milk kefir (i.e. a NO-PLANT version of the GAPS diet) until all digestive problems are gone and your child is well, without any food reactions.
SKIN SENSITIVITY TEST and if safe, then introduce TINY amounts of fermented, peeled, and well-cooked zucchini or carrot to the soups. Fermenting the vegetable first makes it the most digestible, then it should be cooked for 1 hour in the meat stock.
**Note: If any diarrhea returns, then stop and wait, and try introducing the vegetable at a later time.
When all digestive issues are resolved, using the methods of introduction previously outlined for new foods, slowly follow the original GAPS Introduction diet.
OPTION 2: IF BABY IS BREASTFED
If your baby has FPIES it is likely that you also have gut health issues too (whether felt or not), which will affect your milk. It is important then, for you to also be on GAPS. In general, breastfeeding mothers do not go on the GAPS Introduction diet, however, in the case of FPIES it is recommended that a breastfeeding mom goes on Stage 1 or 2 of the Introduction diet and that she stays there until her nursing baby is ready to progress to the next stages with her.
Reactions and Symptoms Transitioning to GAPS
It is likely that your child will have various symptoms during this transition onto GAPS, such as reflux, crying, night waking, mucus in the poo, skin rashes, etc. As the child is given the healing foods of GAPS, the enterocytes (gut cells) and the balance of the gut microbes will begin to change. Toxins will be released in this healing process and symptoms will likely rear up before they are resolved.
If you are feeling that the reactions are too much, you can try staying at the same stage of progression, or a little less, until the reactions/symptoms level out, and then proceed. In the first few weeks your child may lose some weight and feel yucky, but if you can expect and plan for it there can be less worry. Perseverance will get your child out of their “stuck” position.
Reactions to be concerned about would be the anaphylactic kind, and profuse vomit or bloody stools. If that happens, search for an alternative meat for making your stock, or rotate stocks. Lamb, chicken, and wild caught fish are good meats to start with, in general, beef can be heavier.
Length of Time on GAPS for an FPIES Child
The progression off of elemental formula and onto GAPS foods exclusively can take approximately 4 – 6+/- weeks, but progression is very individual. Some can take a couple of months to work up to a cup of stock…have courage and you’ll get there! A diagnosis of FPIES can be beat!
For more information about GAPS classes that can help you navigate this difficult road to success in resolving FPIES in your child, click here.
More Information on GAPS
Melanie Christner is a NTP, Certified GAPS Practitioner, and Mom of 4 who lives in Vermont. She is the creator of Honest Body and hosts an online GAPS class several times a year. Melanie delights in helping people apply healing protocols to everyday life and becoming friends with their bodies again.