I sit here contemplating our journey over the past two years with my son H, what a challenge it has been. It’s been a search for answers, one steep learning curve for me as his mother and primary carer, one with many tears and challenges but also one of hope as we move closer to finding answers.
From the moment he entered the world it was a truly different start to life than our experience of our oldest child P, who in hindsight seems like a complete unicorn of a child with no food issues at all. During our stay in hospital after his birth there was vomiting, so much vomiting, though it never phased him. The nurses kept a pile of linen in my room and I kept sending laundry home with my husband as we both were soaked through with breastmilk. During his weeks as a newborn the vomiting continued and so did all of the laundry! Though he slept better than my oldest, I would spend parts of the night holding him up after a feed to ensure he was a little more settled when I would lay him down. A trip to an osteopath at 12 weeks resolved his vomiting and we seemed to be heading in a better direction.
Around his 6th week of life we started to experience some horrible waking episodes of a night time, he would wake screaming every sleep cycle until about 2am in pain. Screams like someone was hurting him badly. I would run to him and offer a breastfeed and back to sleep, but then he would wake again and again. After this happening a number of times I noticed a pattern, there were certain foods that seemed to trigger these episodes and were then banished from my diet, broccoli, cauliflower, cabbage, dairy, lentils, chickpeas….and worst of all chocolate! The list kept growing and I started on a google hunt. All of these foods were listed as being “gassy” foods and not ones that you should have when breastfeeding if your little one has a sensitive tummy. The reality was you could Google just about every food and a website somewhere would tell you it causes gas and discomfort. It was a complete wormhole and one that really wasn’t ever going to help us. At the time it really never crossed my mind that what my son could be experiencing was a food intolerance or non-IgE allergy.
Through 4-8 months my son experienced a severe nursing aversion, 11 days of completely refusing unless it was the middle of the night or just as he woke from a nap. This turned into 4 months of him only wanting to feed in the quiet and dark – no easy task when there’s a 3yo in the house too.
We introduced solids at 6 months and our experience wasn’t one that mirrored my daughter’s. We offered finger foods with a baby led weaning approach and he was distressed by eating with food getting trapped in the roof of his mouth. Through some hunting on a parenting forum I found out about an amazing Infant Feeding Specialist (Speech Pathologist) who helped my son enormously and gave us a plan to introduce foods. We also had his oral motor function checked. Over a number of months we slowly had my son eating foods and this then started to highlight some more challenges. Upon her recommendation we visited a paediatrician, we shared our journey and discussed this ever growing list of foods that seemed to cause these horrible screaming/waking episodes. He took one look at my list and told me to try 2 of the foods again, yet the rest he suggested likely correlated with my son having a food chemical intolerance (amines, salicylates and glutamates as well as other problem food additives). This whole time it wasn’t about gassy foods, it was about some seemingly unrelated foods that all had a common connection. He emailed me a PDF with information on the Royal Prince Alfred Hospital Elimination Diet and I went cold turkey on a huge number of foods – 99% of what’s available at the shops was now off the menu. I was filled with hope that we had an answer. A few days later we met with a Paediatric Dietician and she talked me through the diet – I was almost numb leaving her office and feeling completely overwhelmed. By day 5 I was incredibly grumpy mess as I was experiencing withdrawals and a little angry with the world that this is what was happening. My diet consisted of 1 kind of fruit, about 10 random vegetables, rice, eggs and select meat which had to be purchased fresh daily from the butcher. With a few more weeks passing we noticed that the screaming episodes had stopped. It was a huge relief to know that my little guy wasn’t experiencing all this pain and we really felt like we were getting somewhere. Unfortunately unlike an IgE allergy there are no scientifically reliable tests so the process of identifying non-IgE allergies or food intolerances is one of elimination and challenging (reintroducing the foods to check for a reaction), the process can take months.
A number of months had passed, though the screaming had stopped, my little guy was still very much an unsettled babe. I had realized that through the haze of a lack of sleep and wakeful nights I was missing more food reactions – different foods cause different reactions! For us, some caused screaming, some caused digestive issues (I shall spare you the details), others would cause very very wakeful nights (8+ times). We have progressively added some foods after challenges but also cut some further foods and have seen an improvement in his health and sleep as a result – these foods fall into the classification of non-IgE allergies.
He is now 2 and we are still breastfeeding as this constitutes most of his diet because of the discomfort of food. We have also recently engaged a new paediatrician and feel really hopeful that we are on a path to finding better health for my son. We are also looking to explore a possible diagnosis of Eosinophilic Esophagitis (EoE) which is inflammation of the esophagus triggered by food. This is where our journey is currently. So perhaps this is a story that needs to be continued in future…
What have I learnt?
- Allergies and intolerances are not well understood – because of the lack of testing and because science doesn’t understand them, food intolerances and non-IgE allergies are often missed by the medical profession. Get a second or third opinion if your gut is telling you your child is suffering.
- There are no scientifically reliable tests to diagnose food intolerance or non-IgE allergies. Therefore it’s important to take a food and symptom diary for mother and baby to help the right medical professional (a paediatrician &/or paediatric dietician) help identify the food cause(s). Working though this on your own can lead to nutritional deficiencies and also for the process to take much longer.
- Finding answers is hard – babies go through developmental leaps, they suffer discomfort from teething and growing pains, they become unwell. All of these complicate things when you’re looking for symptoms of a reaction. Reactions for non-IgE allergies and intolerances can take hours or days to occur.
- Healthy for all isn’t healthy for some – beautiful organic produce like tomato, avocado or spinach to name a few would cause my son to scream in pain, yet a potato which is often criticised as a non healthy food choice is safe and healthy for him.
- Eating outcan be a huge challenge. Many staff or chefs don’t understand the nature of these unusual food intolerances and non-IgE allergies. They can often fail to cater correctly which means pain for my son. The stress of managing this can often be too much to manage. Calling ahead helps if we are self catering and many establishments do actually welcome this with notice.
- Mcdonalds – with the prevalence of food allergies and intolerances today, I will never look at a child eating at one of these restaurants again with any judgement. Fast food chains have very high standards when it comes to allergies and food handling, therefore these are often the safest place for these kids to eat away from the home. Though for us 99% of our food preparation is done in the home and for every meal and snack, I am truly grateful for a serve of french fries for my son as a safe food
- People won’t understand– everything I thought I knew about nutrition has been flipped on its head. I live and breathe this every day so I can now appreciate that others may find it difficult to get their head around, but it can lead to some frustrating conversations and feelings of isolation.
- Find your safe places – be that a butcher that knows about your issues that welcomes you with a smile, a favourite restaurant if it’s an option too.
- Breastfeeding – though it’s come with a huge personal sacrifice on my own diet, my son is healthy because of the nutrition he’s able to receive from it. I can also still continue to settle him easily when he has discomfort in his sleep. Babies who suffer similar issues with food are also longer term breastfeeders as they seek it out for safe nutrition. So I ignore the looks of feeding an older child as I know what I am doing is my absolute best.
- Preventative measures – you can follow every recommendation around food, pregnancy and solids and your child may still have an issue with food. It’s taken me some time to park guilt that somehow I caused this.
- Highly sensitive to foods can also mean highly sensitive in other aspects of life –there’s correlation with those that are food sensitive to being “highly sensitive people”, these babies need more gentle and loving support for sleep (or wakefulness), and through other aspects of life. In my own son I see sound sensitivity but on the flip side, even at 2 he is deeply empathetic to the cries of other babies or adults, and story book characters.
- Managing life with an intolerant or allergic child will have impacts on the rest of the family, or will require careful planning to mitigate this– whilst there are different ways to approach how the family eats, given the extensive restrictions on my son, we have chosen not to deprive our oldest child of her favourite foods so that there’s a uniform offering for meals. With simpler diet restrictions it can be easy/easier to offer family meals, however for us it didn’t seem fair or nutritionally appropriate. My husband eats a mix of what I/my son can eat and often adds his own sauces or other items to his meal. We also choose not to eat out because of the planning that’s required to make it safe for my son.
So to anyone reading this, I hope this goes some way to helping you understand the challenges around food. Keep looking for answers if you have worries around your own child and be their advocate for answers.