Ipswich parents call for NHS cow's milk allergy training

Harvey and Becca Thompson, from Ipswich, said their son Roman began showing signs of illness when he was just two to three weeks old, before eventually being diagnosed with severe cow’s milk protein allergy (CMPA).

Roman, who was born by planned caesarean on July 16, initially began suffering breathing problems, with Mrs Thompson calling 111 after noticing he was breathing quickly and then appearing to stop breathing for up to 10 seconds.

Roman suffered from red blotches on his skin. (Image: Rebecca Thompson)

Paramedics found his oxygen levels were dropping when he lay flat and he was taken to hospital, where his symptoms were initially attributed to silent reflux.

His parents said red blotches then began appearing during and after feeds, followed by hives, sickness, diarrhoea and a painful rash on his scalp.

Mrs Thompson said they also noticed Roman pulling his legs towards his stomach, grunting and appearing “miserable after feeds".

She said they were initially told the skin problems were baby acne and, on another visit, that she may have been overfeeding him.

As his symptoms worsened, the couple began questioning themselves.

Mrs Thompson said: “I was very adamant he wasn’t [fine] and by this point me and Harvey were questioning if we were overreacting.”

She eventually persuaded a doctor to allow them to try Pepti 1, a hydrolysed formula used to manage cow’s milk allergy.

However, she said Roman quickly developed a severe rash, with his skin drying out and his eyes and ears swelling.

He was taken to the Children’s Assessment Unit, where the couple said a doctor confirmed CMPA.

Mrs Thompson described Roman as "miserable after feeds". (Image: Rebecca Thompson)

Roman was subsequently moved onto an amino acid formula, but his parents said his symptoms continued.

During one particularly frightening episode, Mrs Thompson said Roman became severely swollen after they applied an eczema cream.

An ambulance was called and paramedics asked permission to administer an injection if the swelling did not subside.

She said: “Thankfully his swelling did go down. However, the outcome was the top layer of his skin looked like it had been burnt.

“His ears were awfully affected. They were twice the size and literally chunks of skin were peeling off.”

Roman was admitted for two nights for monitoring and to trial different ointments.

His mother, who had been breastfeeding, went dairy-free in an effort to continue feeding him, but the family said he later passed blood following a breastfeed.

Doctors suspect Roman could have allergies in addition to CMPA and Mrs Thompson was eventually advised to stop breastfeeding.

Roman's skin would peel as a result of his allergy (Image: Rebecca Thompson)

She said the experience was “emotionally draining”, particularly after changing her diet and exclusively pumping to maintain her milk supply.

“As parents we were so run down emotionally and physically,” she said.

Roman returned to A&E on October 11 following another suspected allergic reaction, which included a widespread rash, itching and crying. He was given antihistamines, which his parents said calmed his symptoms.

Now approaching four months old, his parents say his health has significantly improved on his latest prescription formula.

“Roman’s brilliant,” Mrs Thompson said. “His skin is so much better.

“He can just sort of enjoy life without constantly scratching his face. He is just a happier baby.”

However, the family receives 10 400g tins of specialist formula per month, with each lasting around two to two-and-a-half days.

Mrs Thompson said pharmacies can require several days to order more supplies and she had been told the formula could cost around £70 per tin if they had to buy it themselves.

“When it comes to the end of his milk, it is a panic,” she said.

“We lose sleep thinking, ‘Are we going to have enough milk to last us until we can order it again?’”

The couple have now launched a petition calling for greater CMPA training for primary healthcare professionals, after Mrs Thompson said hundreds of parents contacted her on TikTok with similar experiences.

She stressed the campaign was not intended to criticise doctors or the NHS.

“It’s not like the doctors are nasty or anything like that,” she said. “It is literally just simply lack of training, or lack of funding for training.

“That’s why we created the petition to not just advocate for Roman, but advocate for primary healthcare workers because they need the proper support and training.”