Our FPIES Journey Part 1

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.

From an Expectation of Beauty to my Allergy Nightmare

Article by guest author, Barbara van Zyl, who's expectations of beauty were rudely crushed by a severe allergic skin reaction! The pic is how she looks when she follows her own advice:

Once a month, I go for a facial. Some might say that this is excessive and too indulgent. I say that I work hard and that I deserve to pamper myself once a month. Also, after I got the Implanon, my skin started turning on me in a way that it never has in the past (but more of that at another time).

For the past sixteen months, I’ve been going to see the same woman who always uses the same products on my skin. After about three months, my skin got to a point where the breakouts started becoming manageable and my skin was no longer painful. Facial one, crazy hormones zero! At around this time, the beautician suggested that we start using a light peel on my skin to help with the scarring.

Month one, it smelt like hospital and it was one of the most painful burning sensations I’ve ever experienced. After the peeling stopped, at least my skin was smoother.

Month two, it smelt like hospital and it was one of the most painful burning sensations I’ve ever experienced. After the peeling stopped, at least my skin was smoother and the scarring a little less noticeable.

Month three, do a general facial. Rinse and repeat.

Fast forward up to April 2016, otherwise known as last weekend.

I show up, expecting the same thing. Instead I hear about the amazing new product the salon just got in. Apparently, with the new product, the burning sensation isn’t so obvious and it doesn’t smell like hospital. What more could a girl ask for?

So I lie down on the table/bed (commonly known as the table-thingy) all excited and full of expectations (of the non-burning sort).

After the cleansing bit was finished, finally it was time!

It burned like a thousand sons of b*tches. To all the sensitive folk out there, please excuse the “vulgar” language. At least it didn’t smell like hospital.

But, as my mother used to tell me, “It’s painful to be beautiful”. So like the trooper I am, I sucked it up and imagined the beautifully smooth and scar-free skin I’d have afterwards.

Along with the new peel, there came a whole new range of after-care products. Against my better judgement, I said nothing.

Time…

That afternoon I lay down for a nap and accidentally went into sleep of death. Sleep of death: What happens to me when I sleep for fourteen hours or more and nothing and no one can wake me. This might have been due to low blood pressure (I hear that it causes fatigue) or my body being in shock and me not yet being aware of it.

Bottom line, when I woke up around 6 the next morning, I looked like I went to battle with bunch of bees, and lost.

Swollen eyes. Red, puffy face. And the itching!

I tried washing my face. Nothing! I put my face under the hot shower. This actually helped with the itching, but once I got out, it was worse than before. Ice did bring the swelling down a little.

Luckily, Ricka was close by. She did a NAET treatment on me. The swelling went down further. Within the hour the redness started dissipating towards my nose. And the itching started becoming less of a problem.

The point of this story:

  • If you get a bad feeling about someone putting something on your face, say something! Don’t be quiet because “they know better”. You know your body. And when the proverbial poo hits the fan, you’re going to be the one with the mess on your face. (See what I did there?)
  • Always have Ricka close by. This is not permission to kidnap her.
  • You know your body (refer to bullet 1). Assert yourself. And saying “Uh, I think this might, uh, not work” doesn’t count. Saying “I do not want this on my skin/in my food” does. If you’re not quite there yet, you may add “because I’ve never tried this and I’m not sure how I’d react to it”. That’s good advice. I might use it next time.

Good luck out there. Stay strong.

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

Introducing NLP: A Tool for Consistent Success

NLP is an acronym for Neuro Linguistic Programming. NLP is a science, but it also a philosophy, an art and an attitude. It is a science in that it draws on many different disciplines including:

  • Behavioural psychology
  • Linguistics
  • Communication
  • Education

NLP can be and is used in business contexts as well as more personal settings.

NLP is a philosophy – and in my view, a very positive and empowering philosophy. The focus on the positive aspects of human experience sets it apart from many other disciplines: it holds forth “presuppositions” that, if adopted, can change your view of yourself, the world, other people and events in positive and empowering way.

It is also regarded as an art: the more artful you become at applying the tools and techniques in your own life, the more adept you become at generating ever more powerful results for yourself.

In terms of attitude, NLP allows you to develop an empowered and positive attitude. You cannot apply the tools and still maintain a negative or self-limiting attitude – the two are simply polar opposites. By adopting this approach to life, developing a more empowering outlook and learning to use the tools and to apply it consistently, you can take your experience of happiness and success to a level that you have not previously experienced.

This is not to say that you won't encounter difficulties or problems that need solving or issues you need to deal with. What it means is that you will be better equipped to do so.

It also does not mean that you will always be able to control everything - but that you can better recognize when it is appropriate to do so and when you should let things be.

Neuro-Linguistic Programming - what it means

The meaning of the words neuro, linguistic and programming, in simple terms:

  • Neuro means using your mind or thought processes
  • Linguistic refers to communicating verbally and non-verbally with yourself and others
  • Programming refers to how your brain executes repetitive habits or patterns, affecting how you think, feel and react.

Practical Examples

In reality, the human mind looks for ways to automate thought and behavior, to free up mental energy for other uses. We can thus compare the brain to a computer – it automates so that it does not have to think so much!

This contributes to efficacy but could also be to your detriment, especially if those programs are linked to defensive patterns, such as fear, guilt, insecurity, rejection, and so on.

For example, consider a fight or flight response. Should you be vacationing in the Kruger National Park and during an excursion in your vehicle, an elephant charges, within a split second you perceive the danger, think about it, and communicate either by screaming out loud or taking immediate action to get out of its path. You are running a program that allows you to react almost instantaneously, rather than having to think about your next action, which could mean the difference between survival and death.

Although this is an overly simplified example it should give you a good idea of the definition of NLP in practical terms. The above pattern is beneficial in that it ensures your survival. But what if you react in a similar manner when you see a mouse? Then people will say you have a phobia or an anxiety disorder.

NLP's Positive Outlook

In fact, since NLP provides a more positive view than the traditional approach to classifying behavioral and psychological issues, I would rather say: you are displaying a recurring pattern or program, which probably developed instantly during an event where you perceived a harmless rodent to be a life threatening animal.

And to take this further, since you learned this behavior instantly, creating a limiting program or pattern, you can also unlearn it instantly.

If we are to take this another step further and consider everyday events, you may also have patterns that are triggered by other objects, people, events, situations, sounds, sights, smells, tastes, specific words, even textures. Actually, literally anything you perceive can serve as a trigger to set a program in motion.

Perception and Performance

One of the complaints that I often hear from clients is exactly this: Why can I perform at my peak one day but the next day I become hopeless, helpless or totally unfocused? Frequently the source of the problem is not your skill, your talents or your ability, but rather how you perceive your world and the effect that has on your mental or emotional state (given that you had a decent night's sleep and that all the other variables for both days are equal!).

Furthermore, in a world that rewards objectivity, rationality, scientific facts and outstanding performance it can be quite threatening to admit that you have emotions, beliefs and uncertainties that affect your behavior, objectivity, levelheadedness or performance!

While we teach children to identify external signals to ensure that they can maintain physical safety, we are less adept at teaching them to identify the internal signals triggered by a variety of stimuli that can keep them from functioning optimally. No wonder they do not learn how to deal with them.

If you have never learned to identify and deal with your personal signals appropriately, it places you at a disadvantage in any type of situation where performance is critical, whether work, home or other settings are coming into play.

Fear as Appropriate or "Inappropriate" Emotion

There is a time for everything; even emotions such as fear, anxiety and anger. You would know that these emotions are not reserved for those times though, such as when you face a burglar, are involved in a near accident or experience a violation of your person, either mentally or physically. Limiting emotions can make themselves known at times when external threats are real as well as at times when these emotions would be regarded as irrational and rather self-limiting, as we saw in the example with the mouse.

If you are unable to identify the origin of your own emotions and rather try to deny it or suppress the feeling, you are adding unnecessary stress to your life. These types of stresses can have a debilitating effect on all levels of your being – physically, emotionally, behaviorally or mentally.

In the real world, there are also those times when you do not have the luxury of engaging in contemplation to try and work out what caused the emotional response, but rather need to be able to deal with it instantaneously without creating negative consequences. In this situation you need the tools to help you to achieve positive results, as you face uncomfortable feelings.

Having access to the tools provided by NLP, you can change the way you think, feel and act. Empowering beliefs can fundamentally change the way you look at yourself and others. Living according to such a set of beliefs cannot but change the way you think about your world. By changing your thoughts, you will generate different feelings, less limiting, and again in turn, your behavior will be positively influenced.

From Thought to Destiny

How do you define destiny? Do you see it as a predetermined map of what you can expect in your life? What if it is actually created by your own thought system? Then, you would no longer be a victim of fate, but rather, your life becomes the narrative you shape yourself! If your story is under your own control, why would you want to turn it into pulp?

To change your future, transform your thinking! Especially those that speak of fear, failure and lack, keeping you imprisoned in the same recurring pattern.

Changing your thoughts is easier said than done, but not impossible.

The rewards you reap from committing to the development of a new way of thinking, about yourself, others and your world will extend to how you feel, your available energy, better health, confidence, self-regard, self-love, empathy for and relationships with others, to name but a few.

An Honest Talk with Yourself

Can you face an honest dialogue with yourself - one about yourself in terms of your true talents, your strengths, your habits, the ones you have and the ones you would rather develop, what you can control, what responsibilities you are ready to accept, etc.?

Can you have that dialogue without focusing on what is wrong with the world, your life, other people, their judgements of you, how unfairly life and people have treated you, your own unmet needs, your fear of failure (or success) and so forth?

Can you talk to yourself about love, self-love and self-acceptance? Are you ready to talk about what joy and happiness would mean to you?

Or are you caught up in a stream of thoughts about fear, disappointment, anger, sadness, blame or shame, to the extent that considering concepts such as love and happiness appear impossible?

I am not advocating that you ignore what you see as your shortcomings, your disappointments and your fears. Or that you ignore the anger and blame that you are directing at yourself or others.

However, if those are the only thoughts that occupy your mind, without thinking about how you can think differently, helping you to increase your level of courage to tackle those fears and obstacles, you will remain locked into an ever growing spiral of worry, anger or avoidance.

Changing thoughts requires effort: You have to be vigilant about watching out for the self-sabotaging ideas and the self-blame.

And the mental onslaughts that you launch through your thoughts at the world and others.

Changing your life story starts with the real thoughts, perhaps deeply hidden, about yourself.

Only once you are able to master your thoughts about yourself, will you be able to look at others differently and see them as deserving of love and happiness, in the same way you are.

What You Think is What you Put out into the World

You may think that what you truly think about yourself is private – do not be fooled. This is a false assumption.

Thoughts are energy and energy extends outwards.

If the thoughts you hold about yourself differ from the image that you are trying to project, others will experience inner discord. They may not understand why they feel that what they “see is not what they get”. Since they may not have taken proper charge of their own minds, they may simply dismiss it as their imagination.

You may also think that what you think of others is private – the same applies. Others may not know the exact content of your thoughts, but they will pick up on the energy that you radiate. They may not be able to put into words what they pick up and they may not even be able to understand the reason why certain impressions are popping into their minds, but discomfort will most probably ensue. Discomfort that can be turned back on you through avoidance or arguments.

You can change the dialogue that you have with yourself about yourself, others and situations consciously.

Conscious Effort

This is not easily achieved. In fact, it is probably the most difficult exercise to undertake since it requires you to focus your mind consciously on that which no longer serves you, what you want to change and how you want to change it, in order to change how you feel, what you do as well as the results of those actions.

It would require you to remain constantly attentive to your thoughts and question the validity of what you are thinking. Whether you want to change your thought patterns or are working towards a more tangible goal, the principle remains the same.

For instance, should you make a decision to that you are going to exercise until you are fit enough to run a marathon, you know that you would need to do so regularly. You would have to run daily, persist when tired, cope with physical discomfort, sacrifice time, invest energy and effort and perhaps even give up other things.

Failure to accomplish healthier ways of thinking is no different than failing to achieve other goals. Should you interrupt your exercise regime for a period of time, or lose interest, or lack the motivation to follow through you are bound to either give up before the marathon starts or fail to complete it, should you actually turn up.

What if that which prevented success was the belief that you can never complete anything successfully?

So, you can see how such a thought results in the life story you are writing, both in terms of the results of your actions as well as the mental distress it causes you.

Are you ready to commit pen to paper and start recording those thoughts that are not reflective of who you want to be, but that you have allowed to define you and your life?

And are you ready to consider what you will “lose” by letting go of those thoughts?

By doing so, it will give you the opportunity to search your mind for thoughts that represents the mental life that you want to create and substituting your limiting thoughts with those. You can even record them as your own personal affirmations to serve as easy reminders of the new mental narrative you are creating.

Upcoming Events

FREE Info Session: Healing Food Sensitivities and Promoting Gut Health

Saturday 16 April 2016 11h00 to 12h30

The Next Creativity Coaching Workshop Series starts on 23 April 2016

 

Skype Coaching

You can choose whether you prefer to be coached one to one at my office, or via Skype. Skype offers the opportunity to eliminate unnecessary travel as well as an opportunity to be coached no matter where you stay.

You can make a special arrangement for a half hour Skype pre-coaching discussion, which is risk and cost free. In this way you can determine whether you would be comfortable to work with me and I can get to understand your needs before we embark on a joint journey.

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