'We're just trying to keep our child alive': life with FPIES

FPIES is a rare and sometimes fatal condition. (Posed by models)
FPIES is a rare and sometimes fatal condition. (Posed by models) Photo: Getty Images

We have a beautiful seven-month-old son, and his allergy rules our life.

It has changed us into the type of parents we never wanted to be. We always pictured ourselves to be relaxed parents who let their children learn through their own trial and error. We imagined we would let our children eat exactly the same foods we eat from a young age onwards, and give them as much responsibility for their own choices as they could handle.

However, for the time being we have changed into helicopter parents, monitoring every movement of our son in a situation where there is food in the same room as he is. We never know what might trigger an attack that could kill him.

An unusual allergy 

Our son has FPIES: food protein induced enterocolitis syndrome. It is a condition that makes a child allergic to an unknown range of foods.

The allergic reactions aren't your typical skin rashes, swelling or even anaphylactic reactions; FPIES reactions occur several hours after ingestion in the gastrointestinal tract and often include lead to vomiting, then onto diarrhoea, bloody and mucousy stools, and severe abdominal pain from a bleeding and inflamed gastro tract. The sufferer can also go into shock.

Our son has had all of these reactions, with each allergen leading to a different mix of these symptoms.

In the longer term, these reactions can lead to absorption problems in the digestive tract, weight loss and failure to thrive.

Fot us, it all started when our son was 2 months old. For reasons at the time unknown, our son was fine one moment and started projectile vomiting the next.

He continued to vomit for about two hours straight, first emptying out his stomach content and continuing with bile after that. His little body could not cope with the violence of the vomiting and just shut down. He passed out, lying like a ragdoll in our arms. His breathing slowed, then stopped.

Luckily we got our little man breathing again by the time the ambulance arrived.

In hospital, a whole range of tests was done but no reason was found for his vomiting and passing out. We were told it must have been a stomach bug.

It took us a total of six episodes to figure out the cause, and to find a doctor who took us seriously and get a proper diagnosis. Sadly we met a lot of scepticism and misinformation along the way.

It is very common for children with this condition to struggle to get a proper diagnosis, and most children are misdiagnosed with stomach bugs first. FPIES is rare and most doctors we encounter have never heard of it. But we have also come across doctors who assume parents are dramatising whatever is wrong with their child, and take anything you say as an overstatement of the truth.

When asking for a referral to a specialist, one GP told us he did not believe in "all these children with allergies nowadays" and advised us to just keep feeding him his trigger foods and he would get over it soon enough.

After one episode which landed us in hospital again, we were told by a paediatrician not to take our son to hospital anymore when he vomited and stopped breathing, as there was nothing else they could do. We were given a 10-minute CPR course and sent home.

Now that our paediatric allergist has figured out that these vomiting episodes are allergic reactions, and our son's passing out is a shock reaction that can be fatal, we know that if we had followed the advice of these healthcare professionals it would not be unlikely that our son would not be with us anymore.

Nowadays we travel around with a letter from our specialist explaining our son's condition so that when he has another severe reaction it explains to the personnel in the emergency department what is going on and what treatment is needed. This has been really helpful, but we have to continue to explain his condition to most healthcare professionals we come across.

Life with FPIES

The first step in dealing with FPIES is trying to reach a state called baseline. Baseline is when your child has a main foodsource to which he is not reacting. After reaching baseline you can start to introduce new foods in trials one at a time, to see whether or not your child is allergic to this food.

It has been hard trying to reach baseline. We have trialled various formulas but still haven't found one to which he does not react. Anything I eat reaches my son through my breastmilk, so I have been on an increasingly restricting diet. It started with eliminating dairy and soy, but still after eliminating whole food groups that he had confirmed reactions to, we never managed to get our son reaction-free on breastmilk.

We are currently trialling an amino acid-based formula, which is the most hypoallergenic formula out there, and we have good hopes hat our son can finally be reaction-free for the first time in his life.

As with other allergies, a FPIES allergy can be to any food. However, contrary to "normal" allergies, FPIES allergies do not show up in allergy testing. The only way to find out the triggers is by trial and error.

The number of foods our son is allergic to is unknown, but the list continues to grow as we trial more foods. When someone asks what foods he is allergic to it is easier to say what foods he is not allergic to.

So far, his safe list contains four foods.

The list of foods that he failed currently contains seven foods, two over-the-counter drugs and a range of formulas. Any other foods are still an unknown but we hope the safe list will get longer as we continue to trial new foods with him.

We want for our child to participate in normal social interactions, but are very much aware of the risks involved. Our son is enrolled in a daycare centre that has been amazing in dealing with his allergies, and also our friends have been very understanding and helpful.

We don't ask our child's environment to change, because with his limited diet of only four safe foods that would be impossible. We do try to develop our own traditions for various holidays that do not involve food, or involve only safe foods.

FPIES parents get very creative and share recipes for birthday cakes made of mashed potato, peas and coconut, or pancakes made of buckwheat, almonds and applesauce.

The good news is that most children outgrow this condition by the time they reach the age of three or four. Up until that time, it's our main job to keep our boy alive until he outgrows his allergies.

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