The missed allergy diagnosis: Sarah*

I was so excited when I found out that I was pregnant with Sarah. I always wanted a girl; I decorated her nursery with love, bought gorgeous dresses and imagined how I would spend my maternity leave enjoying spending time with her, leisurely strolls in the park, baby massage, fun at play groups.

 

Things didn’t turn out so rosy.

At 4 weeks of age, Sarah started to not feed properly, coming off the breast every few minutes, crying and distressed. She would only feed for 2-3minutes at a time, and in between feeds she was unhappy and cried a lot. As a new mother, this really panicked me. This is not how I imagined motherhood to be.

For the first time in my life, I was not in control and had no answers. I visited the doctor time after time but kept being told that Sarah was growing fine and nothing was wrong. Eventually, the doctors said she probably had reflux and put her on various medications. But nothing worked. My faith in western medicine – something I had devoted my life to – dwindled as I frantically tried to find answers and did everything anyone told me to do: from cranial osteopathy to trying different formulas.

Still, nothing worked.

Things got worse until at 8 weeks she was so severely dehydrated from not feeding that she was admitted to hospital and had to be tube fed. That was the final straw.

Watching her struggle as a nasogastric (NG) tube passed from her nose into her stomach broke my heart. The guilt I felt as a mother, and even worse, as a mother who was a doctor, was all consuming. I became a doctor to help people, and yet I could not even save my tiny baby crying for help!

When she cried, I cried with her.

Light eventually came in the form of Rosan Meyer, a paediatric dietician who I found through my network of medical contacts. She was not on the hospital team that looked after Sarah, but I was lucky to have found her otherwise Sarah’s diagnosis would have been more delayed. She was so supportive and kind; a light in my darkness. Rosan immediately told me that Sarah had Cow’s milk protein allergy and suggested treatment options.

But how can she have a milk allergy? The diagnosis would never have crossed my mind! She had no ‘typical’ features of allergy I’ve been trained to spot at medical school. All she had was an aversion to feeding and constant crying!!

But Rosan was right. After 2 weeks of giving Sarah Neocate down the NG tube, she started to take feeds normally again.

Sarah had Cow’s Milk Protein Allergy (CMPA) – although I breastfed her, the cow’s milk protein still passed through my breast milk in small quantities to her (actually, this is quite rare – breastfeeding is normally protective against allergies but for me it was the opposite, and I wonder whether my leaky gut contributed to this) The allergy had caused her gullet to be inflamed and every time she drank milk, she cried from pain and eventually refused to feed. Taking the allergen away healed her gut without any medications.

The good news!! She grew out of ALL of her food allergies at age 4. But I have always wondered if the delayed diagnosis has cost Sarah her enjoyment of eating. She is now 8 years old, and for the last 8 years, she has never been excited to see food in front of her. Eating has always been a ‘chore’ for her and I don’t know if the trauma of the early weeks of her life has had a lasting effect…I also think the early restricted range of foods, tastes and textures has affected her palate development, so she still doesn’t like any foods containing ingredients she was previously allergic to (with the exception of ice cream!)

Take home message

Food allergies can be easily missed and do not have to present with the typical symptoms or swelling/rash. Gut allergy symptoms are easily missed but can have profound effects.

Allergy tests can be negative for Cow’s milk protein allergy – the subtle symptoms are listed in “How do I know my child has a food allergy?” Most doctors know about the life-threatening allergy symptoms that are caused by IgE but few recognised the symptoms in Sarah which were delayed, IgG mediated. IgE-mediated allergies are fairly easy to diagnosis, but a diagnosis of IgG-mediated allergy requires an experienced physician or dietician (like Rosan) who is knowledgeable because tests are often negative and good clinical acumen is needed. 

 

 

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