Teddy showed signs of CMPA from day one.
My labour was traumatic. I ended up in High Dependency and he ended up in NICU. On his second day they gave him some formula to tide him over until I could get down there and try breastfeeding. He vomited it all back up. They told us “He must not get along with that brand of formula.” On our fifth night he was allowed to on the ward with me and he screamed the place down. He was hungry but wouldn’t latch, he was writhing around and we couldn’t understand why. They told us “He must have wind.”
We got home and things didn’t get any better. We told anyone who would listen about the mucus in his nappies, his loose stools, his insanely sticky eyes, his constant spitting up, the screaming for hours, the writhing around and how we’d noticed he’d go slightly blotchy after feeding. They’d always have an excuse. If we had a penny for every time we heard “It’s normal” we’d be somewhere in the Bahamas right now. We knew it wasn’t normal and our instincts told us to ignore them and look for our own answer. The moment we laid eyes on the letters ‘CMPA’ we knew that’s what was troubling him. Getting someone to listen was its own problem though and in the meantime he was plummeting the centiles.
There were weeks when he would lose weight. He once only put on 2oz in a week and a half despite nursing every hour and a half. Strangers were buying me coffee everywhere we went, because as they put it “you look exhausted.” Still, no one that could help listened and I was told I had Post Natal Depression when actually I was just tired and fed up of no one listening. When Teddy would start crying I’d cry with him. We stupidly started to doubt ourselves.
Finally Teddy hit the 4th centile (he was born on the 75th) and we felt like we were running out of time. We decided to dual feed, which would either prove us right and someone would have to listen or it would prove us wrong and he would put on weight.
He initially put on weight but the longer he was on it, the worse it got. Six days after starting dual feeding he was hospitalised. He had caught a virus and we guess his body was so busy fighting the milk proteins that fighting a virus too was too much. We hoped this would be the point where someone would listen, but we STILL had to fight. We pretty much refused to leave the hospital without a new formula so they agreed to observe some feeds. Teddy forcefully vomited up every single one. “Is this what it’s like at home?” a nurse asked me. “Yep!” ...We’d been trying to tell them that all along.
We ended up leaving the hospital with Pepti 1. We knew it wouldn’t work and by day five of trialing it things were really bad again. We gave it a few more days but we’d had enough and headed back to the doctors...only to be sent away again after I was treated like a hypochondriac and a liar.
That same day fate took the situation into its own hands. We were running out of Pepti 1 fast, the doctors surgery messed up our prescription, the pharmacy didn’t have it in stock, then they tried to order it but it didn’t arrive in their delivery. In desperation we checked the formula aisle in the supermarket and found a soy formula. We knew it was a risk, just in case he was allergic to soy too but it felt like the only choice we had.
We were offered Nutramigen a couple of days after starting the soy formula but turned it down. We knew it wouldn’t work. We knew Teddy needed a 100% milk protein free formula and the soy formula was already showing promise so we stuck to our guns...
Teddy is now 15 weeks and the soy formula has changed our lives. His eyes are clearing up, he doesn’t vomit, there’s no screaming or writhing and this week he did his first ever normal poo! He’s already back up to the 20th centile and we couldn’t be more proud.
We have a few more appointments coming up with doctors but to be honest we’re feeling as if we’ve done this all on our own, why do we need anyone’s help now? We’ve done the hard work ourselves.
We’re praying that the soy formula continues working for him. I’ve cut dairy out of my diet too for breastfeeding but as an ex-vegan that was easy-peasy!
We’re all so much happier now (despite Teddy having started teething!) and we’re looking forward to the future. We feel like we were a little robbed of his first few months but try and channel that anger into happiness for Teddy. He’s such a smart, happy baby.
We have so much respect for allergy mums. You’re all incredible - This is hard work! We have reason to believe that Teddy may have other allergies so we’ll be taking weaning very slowly when the time comes.
Parents: follow your instincts, fight for the truth and do what’s right for you!