If they shared the nitty-gritty details of what being a parent would involve…
…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, most inspiring parents on the planet. I’m continually impressed with a parent’s incredible capacity for adaptation and endurance when it comes to caring for children.
Take for instance an FPIES mom such as Nichole Sawatzky, who started the websites EllieBellyUpdates and HopeCentric to chronicle her journey as an FPIES & GAPS mom. She has also curated the popular GAPS Kids FB group. Nichole successfully used the GAPS Diet for FPIES, for her 2nd daughter Ellie.
Here is her take on being an FPIES mom:
“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 days 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’.
Today I write about this difficult condition that is mostly (but not entirely) restricted to infants and toddlers, called FPIES.
This article is not intended to be medical advice. Please consult with your own health practitioner concerning your family’s health choices.
I do include a FPIES method of doing the GAPS™ Protocol, that may be of help. Many FPIES families have found restoration of their little one’s health and a healthy family life, through GAPS™.
How you can use the GAPS Diet for FPIES…and what 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. 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). Reactions can take weeks to resolve.
A reaction can look like this:
- Possible fatal shock
It is not yet known how common FPIES occurs in the population. 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]
WHAT HAS CONVENTIONAL MEDICINE SUGGESTED?
Currently, modern medicine has no cure to offer. 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.
These formulas do not fix the root issue, they can only manage it, and with their many processed ingredients, often make things worse.
Before, or concurrently to, a family getting to this point of finding a “safe” formula, 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.
A DIFFERENT APPROACH
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 babies with Food-PROTEIN Induced Enterocolitis??”
To quote Dr. Natasha Campbell McBride, founder 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.”
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.
It 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.
STEPS FOR TRANSITIONING YOUR FPIES CHILD ONTO GAPS
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 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 & SYMPTOMS
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
The progression off of 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!
Melanie’s passion is helping families navigate GAPS digestive therapy in a way that is understandable and well-supported. Having four children of her own, she loves working with children and families, and she endeavors to pair her desire to nourish with practical efficacy for clients.
Melanie works with clients one-to-one and leads families through her instructive and helpful online GAPS Class.
Melanie is a Certified Nutritional Therapy & GAPS Practitioner in Vermont. For fun you can find her creating in her kitchen, Nordic skiing, or swimming in the Green Mountain ponds & rivers with her family.
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