Guest Blog: Nick’s Story

We would like to thank Karen Wylie for guest blogging for us and sharing her family’s allergy story.

People thought “it couldn’t really be that bad.”
People thought “he will just grow out of it.”
People thought “he really must be sleeping more than she says.”
People thought “lots of kids have colic.”

But I KNEW. Parents do. Deep down you know when something is just not right. I knew when my breast milk came in that Nick wasn’t reacting well. After a short feed he would cry and curl up into a ball. The pediatrician at the hospital told me that it sometimes happened as babies adjusted to the milk. So I smiled tiredly, accepted that and went home.

Around 4 weeks, it got worse. Nick would attach well to the breast, then pull off when the milk let down. He would scream and scream – I wouldn’t even call it a cry. He couldn’t sleep, burp or even poo without medication. Any more than 2 hours sleep – day or night – was a miracle in our house. He tried to feed constantly – but it was like waging war with himself. He desperately wanted to feed, but for some reason he couldn’t tolerate it.

People close to us tried to help, they really did. Practical things like taking the baby for a walk, bringing milk and bread and cleaning my house. People close to me knew something was wrong too. They were wonderful.

I was lucky, truly lucky, to stumble across the right people. My local children’s health nurse supported me tirelessly and questioned “silent reflux”. Nick was given a series of reflux medications, as well as soy free, lactose free and hypoallergenic formulas. Elimination diet for me.

In the end, I went to a new pediatrician. The day we went, Nick had not drunk anything from a bottle for 36 hours and would not breastfeed for more than 2 minutes. Despite our most valiant efforts, he was losing between 50 – 150 g each week. It was hopeless. Then a miracle. In the waiting room at the pediatricians’ office, he breastfed for 5 minutes or more without crying. He was silent and happy and he even dozed in my arms.

So in to the pediatrician I go…with a fed happy and sleeping child. I walked in and said, “You must think I am a complete fraud.” He was wonderful. I will never forget him. He took one look at me and said, “I judge babies by how the mother is doing…and you look terrible. Tell me what has been going on.”

It turned out Nick had protein intolerance. He had reflux, yes, but he also developed eosinophilic esophagitis, so when he did feed, it became so painful he couldn’t tolerate it at all.

We were prescribed an elemental formula – Neocate – to try. At Nick’s first attempt, he took 50 mls without stopping. I was so happy I cried. And from there, he grew stronger and stronger. He gradually regained all his weight and then some. He smiled, laughed and even slept. Life was wonderful.

For us, we had our happy, healthy baby at last. Neocate was our little miracle. And the people I found eventually who led us there – our children’s health nurse and our pediatrician – are the heroes of our story because without them, I really am not sure we would have had such a happy ending.

So if this sounds like your story too, then I say this to you:
– Go out and find the help you need.
– Trust the people who believe you.
– Ignore those people who offer unwanted advice or make you feel like an incompetent parent.
– Accept help, any practical help, that is offered.

Your job as a parent is to do the best you can for your child, and that means you need to find the best people you can to believe in you and help you find the happiest ending you can in your own story.

– Karen Wylie

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