For parents who’ve watched their child experience an extreme reaction to food, such as food protein induced enterocolitis syndrome (FPIES), weaning can be a stressful time. The joy that is usually associated with your baby enjoying their first foods, can be replaced by fear and tension. And understandably so.
In today’s post, we aren’t hoping to transform the experience of weaning with FPIES. Trying to deny the difficult emotions associated with this particular milestone would be, at best, pointless and, at worst, dangerous. We’re also not trying to pretend that there’s a one size fits all solution. Rather than trying to hide or bury the concern, we hope to help you use it as a tool for safer FPIES weaning.
The advice provided in today’s post is offered as an FPIES Mama. Not as a dietician and not as a doctor. Once you have decided on your chosen FPIES weaning strategy, it’s always best to check your plan with your dietician or specialist doctor, before you begin, to ensure that it’s appropriate for your child.
It probably goes without saying, that your child’s weaning diet shouldn’t include the foods which trigger their FPIES reaction.
Some babies are able to tolerate foods which have been produced in the same factory as their trigger foods, others won’t be able to. In the early stages of weaning at least, I would personally stay away from foods that may contain your baby’s trigger. Otherwise, it won’t be clear whether any reactions following consumption are due to trace amounts of their known allergy, or to the new food you’re intending to feed them.
Knowing where to start when weaning an FPIES baby, can be the hardest part. The great majority of popular first baby foods are also frequently FPIES trigger foods.
When foods such as rice, sweet potato, peas, oats, wheat and barley are considered high risk along with dairy and soya, starting weaning can feel daunting.
I vividly remember wondering if there was ever going to be a food which my baby could eat. We had been given no information about FPIES at that time and lived in constant fear of the exorcist-style vomiting that seemed to inevitably follow every attempt at eating.
In our case, it really took months to feed our son any food that he successfully digested.
What was the first lesson that it took us months to learn? Well, that lesson was all about quantities. We were advised to offer only one food and start with a teaspoon a day. We were then to offer increasing quantities daily until we established that it was a safe food or a reaction food.
While this was sound advice with our first baby, it didn’t help our FPIES baby at all. A teaspoon full of peas, for example, made him so unwell that 20 hours later, he was so exhausted he didn’t have the strength to sit up, cry or even drink from his bottle.
So, the first step to weaning an FPIES baby is to allow yourself to be cautious. Different babies have different constitutions. Starting small and going slowly may save the more sensitive babies from suffering.
In our case, a single teaspoon of trigger food was still too much. He was simply too ill to continue offering that quantity of potential trigger foods. Instead, we offered a fingernail sized amount. This was enough of a test to make him ill. Sufficiently ill to know not to push forward with that food. But not so ill that we had to sit up all night feeding him cooled boiled water with a syringe to avoid a having to check in at Costa del Hospital. If your baby has had extreme reactions the first time they’ve consumed their trigger foods, then this approach may work best for you.
If your baby has a history of reacting on the second, third or fourth time or tenth time they ingest a trigger food, you may wish to start with the traditional teaspoon on the first day. You could then maintain or reduce the quantity on the second, fourth or tenth day when you feel the reaction is most likely to happen.
Both variants of this strategy aim to reduce the quantity of trigger food consumed immediately before the reaction. While I have never read anything that confirms or denies a link between the quantity of trigger food ingested and the strength of the reaction, my personal experience suggests that for our son there is.
The length of your food trial will depend on the length of time it typically takes your baby or child to react. For example, our son has never had a reaction later than 4 hours after ingestion and the majority are more than obvious within 2. Our trials involved 3 days of a fingernail sized portion, a rest for 3 days and then a further 3 days of normal introduction (involving a teaspoon amount increasing each day) if the food was deemed safe. For babies who react on the fourth day, trials may last in blocks of 7 days, for example.
Another strategy we used to make progress with weaning, was to offer foods thought to be lower risk first. Lots of suitable tables indicating high and low risk foods are available online and from your dietician or specialist. Often, they are classed by histamine content or by food family. FPIES UK, for example, offer a fairly comprehensive list of foods with an indication of their reaction potential for FPIES babies and children.
This strategy was quite effective for us. Yes, two foods from the likely to be safe area of the list did cause strong reactions. But, trialling the foods in this way helped me stay rational and continue to try all the other foods which were safe (even if not popular) for our son.
Sadly, it simply isn’t possible to provide a definitive list of safe and high risk FPIES foods as every baby and child is different. There is no guaranteed safe food.
It is, however, reassuring to know that most other FPIES babies didn’t react to a food before you give it. For this reason, I used the list provided by FPIES UK when weaning my son. The link to their feeding guidance and the list is included at the end of this post.
The last step to successful FPIES weaning for us, was sufficient gut rest after reactions. For 5 months, we had followed the advice of wait a few days after a failed food and try the next food. In the case of our son, that was simply too soon. Especially if he’d eaten a whole teaspoon of his trigger food. Realistically, our son required a rest of 7- 14 days after a serious reaction. He was able to eat his 2 safe foods during that rest once we found out what they were, but prior to that he had to sustain himself with elemental formula.
As every FPIES child is different, finding the right number of rest days for your baby or child is a matter of trial and error. If at all possible, it’s best to agree a rest period to trial with your dietician or specialist. This way, they can ensure that you have sufficient formula or appropriate nutritional advice for breast feeding after a reaction.
And finally, don’t forget to be kind to yourself. FPIES weaning is stressful. It’s ok to acknowledge that and to set different weaning goals for your FPIES child to those of other children. It may well take longer for your little one to get to eating a wide and varied diet, but there’s every chance that in the future they will.
Xx Allergy Mama
Coming soon in the Sunday Weaning Series- Identifying Trigger Foods- When Is a Fail a Fail?