Our FPIES Journey Part 1

Healthy balance

Article by guest author, Chantal, a client. I am honoured to share part of the journey she and Clyde is undertaking as parents to a little baby girl, who we will call Miss I (to protect her privacy), diagnosed with Food Protein Induced Enterocolitis Syndrome. Although this was my first introduction to FPIES, my work with clients with various allergy-based health issues made it the obvious choice - to try to help them.

This article (dated 6 June 2016) is the first installment in a series of articles that Chantal will write.

And hopefully other parents, who may be at their wit's end with similar experiences, could find the information not only helpful, but it could possibly also eliminate many “trial and error” attempts to resolve similar health issues in their infants.

The Start of the Journey

I am a mommy to two precious girls; a three and a half year old and a seven month old. Our journey with our seven month old has been a roller coaster, although she is such a precious blessing who is always smiling and happy!

When little Miss I was three weeks old, I realised that something was not right as she had difficulty staying asleep, had lots of reflux and was generally fussy. I took her to the paediatrician, who diagnosed her with gastro-oesophageal reflux.

She was prescribed Nexiam. Initially, Nexiam did not seem to make a major difference until I began to see a link between her reflux and me consuming dairy products. I stopped eating all dairy products and her symptoms improved significantly.

Dealing with Food Related Reactions

At four months the paediatrician recommended that we commence solids, starting with rice porridge. We started her on rice porridge, but I noticed that she was not tolerating this well. She broke out in a rash around her face, had terrible reflux, she also seemed to have stomach pains and her stool became slimy and mucousy. I contacted the paediatrician, who recommended I try another brand of rice porridge or vegetables if she still had a bad response to the porridge.

I waited about a week before trying another brand of rice porridge, as I wanted her rash to settle a bit. Three hours after consuming the porridge we had a very scary reaction. Little Miss I woke up covered in vomit and kept on vomiting for another hour, becoming limp and very lethargic. Her little eyes looked sunken with dark circles underneath. The following day she presented with profuse green mucous diarrhoea and lots of reflux. As our doctor recommended, we waited a week and then tried gem squash, which produced a similar reaction.

Looking back, it’s as if starting solids opened up a Pandora's box; her stool always contained mucous and she began to react to various foods in my diet through my breast milk with reflux and fussiness.

After that, I started an elimination diet.

The reflux really improved and she became a happy baby once again, although her stool still contains a large amount of mucous and she still cries from pain in her sleep.

The Diagnosis: Food Protein Induced Enterocolitis Syndrome (or FPIES)

We took her back to the paediatrician, who diagnosed her with FPIES and referred us to a paediatrician with a special interest in allergies.

FPIES or Food Protein Induced Enterocolitis Syndrome is a rare auto immune and allergic condition where infants react to protein in various foods (www.fpiesfoundation.org). These reactions typically occur to foods which are not generally considered to be allergenic and usually only occur when the child starts solid foods.

We eagerly consulted with the specialist after waiting a month for the appointment. She could not give us many answers and said that most children outgrow FPIES by the age of three to five years. She could not provide us with a very clear plan on the way forward, besides trialing foods and seeing if little Miss I would have an FPIES reaction similar to what happened with the rice and gem squash.

She also suggested placing little Miss I on Neocate as opposed to breastfeeding (Neocate is a corn-based medical formula, manufactured from genetically modified corn, which is broken down into simpler amino acids – compared to other formulas.)

We left this appointment feeling extremely terrified and hopeless – as my gut told me that by trialing food randomly, we would cause more damage to her gut and that she would possibly react to all food we would try. She also reacts to corn in my diet and does not take to a bottle very well, so I felt terrified about stopping breastfeeding and starting her on the Neocate.

My own research

In the month that we waited for the specialist appointment I did tons of research into FPIES. A few common things kept popping up in the research:

  • NAET
  • The GAPS protocol
  • How some FPIES babies go on to develop some traits within the autistic spectrum and
  • How for some no safe foods are found even after months of trials with different foods and relying solely on breast milk and medical formula for survival.

I am a paediatric occupational therapist and work with autism, learning disabilities, dyslexia and dyspraxia. The last two common points (see the list above) related to autism and thus the prospect of finding no safe foods terrified me.

Also, I noticed that after little Miss I reacted to the solid foods she stopped babbling - and furthermore, her eye contact was poor, the day after ingesting the food. This really scared me!

NAET and GAPS – Taking steps with a new way forward

I knew that I couldn't give up and that we had to find a path through this maze.

I decided to explore NAET and the GAPS protocol further as many FPIES mommies on the web reported great success working through their child's FPIES using NAET and GAPS.

The next challenge was finding a NAET practitioner in South Africa. After searching, I found only three registered NAET practitioners. Only two of whom were in Gauteng. On one late Tuesday afternoon, I gave Ricka a call. Although she had never heard of FPIES, she was willing to listen and more importantly was willing to help little Miss I. And thus our NAET journey with Ricka started – with an early Saturday morning visit to Ricka.

My brother (who lives in London) also sent me a book called Gut and Psychology Syndrome, detailing the GAPS protocol and diet which was developed by a UK-based neurologist, Dr. Natasha Campbell-McBride. This is how GAPS came into our life.

Now, we are cautiously optimistic that both NAET and GAPS will give us some hope on this FPIES adventure.

Part 2 of this series of blog entries will be published shortly. If you want to be notified when it is published, subscribe to the newsletter – it will contain a link to each installment as it becomes available.

To learn more about getting relief from allergies, read the NAET page, where you will find additional resources.

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