Holland has what’s called tyrosinemia. This means his body cannot metabolize a specific amino acid called tyrosine. To survive, she must follow an extremely low-protein diet supplemented with a special formula made by Abbott. The formula called Tyrex-2 is an amino acid modified medical food. Without it, she won’t get enough of the vitamins and nutrients that most people would get from a regular diet.
Holland uses about half the formula she would normally eat.
“We just wanted to try to make it last a little longer,” her mother Shannon Holland said.
Her mother said they were working with Claire’s nutritionist at Tulane to make sure she was getting enough of the nutrition she needed.
“It’s kind of scary,” Shannon Holland said. “We only have one case of formula left and we didn’t know how long that would last.”
It could take months before the country’s supply returns to normal. Currently, 45% of infant formula nationwide was out of stock at some point in the week ending May 15, according to figures provided to CNN by Datasemby, a real-time data tracking agency that estimates the quantity of product on store shelves.
“It’s still just the unknown how long it’s going to take and not being able to find a suitable replacement for him is very stressful,” Holland said. “It also had an impact on (my daughter).”
The Hollands are not the only family stressed by the shortage.
Renee Steiber, who lives in suburban Chicago, said she had to start rationing the formula used by her son, Owen. Finding his specialty formula, Necotate Jr., became a full-time job.
Her 11-year-old son is counting on the formula. It’s made by Nutricia, not Abbott, but when Abbott customers couldn’t get their formula, they switched to Owen’s.
“Basically, they sort of resumed supply every month,” Steiber said.
Owen typically receives formula four times a day through a feeding tube. He can eat very little solid food because he suffers from eosinophilic esophagitis (EoE), a rare disease in which his body is essentially allergic to many foods. Unlike standard food allergies that give a person hives or anaphylaxis, when a person with EoE eats foods they are allergic to, it causes their esophagus to become chronically inflamed, so much so that the nobody can swallow.
Steiber had about five days of formula left, when her mother called the supplier as she always did to place a new order. It was the first time she had heard that they didn’t have one. “I was like, ‘Oh my God, are you kidding me,'” Steiber said.
She spent the next few days calling all the pharmacies in the area, asking out-of-town relatives to pick him up, and searching for him online.
“The problem is, every time I found something when I tapped my credit card, it disappeared and sold out,” Steiber said.
Steiber said she ended up giving her son one less breastfeed per day.
“I was trying to stretch it as much as possible,” Steiber said.
For the last feed of the evening, she said she was just giving him water instead of formula.
“I know it’s not the best nutritionally, but at least it helps him feel full,” Steiber said.
Fortunately, Steiber added that Owen didn’t lose any weight. And he has his usual good energy, she said.
“But I know that’s not ideal because that’s his main diet,” Steiber said. She’s working with a nutritionist at Ann & Robert H. Lurie Children’s Hospital in Chicago to find alternatives for Owen that provide more calories and also add more table salt to this diet. The nutritionist was also able to find a new company to provide additional formula. “But no one knows how long this supply will last,” Steiber said.
Danone, the company that makes Neocate Junior. – the original formula used by Steiber – said in a statement to CNN that it had increased production and shipments to the United States.
“We understand how important it is for families to have access to these specialty formulas, so it has been our top priority to increase production and supply since the shortages that occurred in February,” the company said.
“You know, we saw a lot of weight loss in our patients because they frankly had no choice but to ration,” Wechsler said. “And there just wasn’t much we could do.”
Wechsler said he understands the parents are doing whatever they need to do to make the situation work. From a medical point of view, this is certainly not ideal.
“When there’s a shortage, you have to do things a little differently,” Long said.
“For children under six months, it’s a bit more risky,” Long said. “You want to make sure they’re getting a minimum of calories and your pediatrician can help you calculate that.”
Long says what parents absolutely want to avoid is putting less powder or water in their formula to make it last longer. “It can be very dangerous for babies,” Long said.
Long said she also hears from families who are considering making their own formula, but she advises against it. “Honestly, the recipes I’ve heard about on the internet make me cringe,” Long said.
Holland said he got lucky recently when a Tulane dietitian called Abbott on their behalf. Not two days later, they received a crate of formula on their doorstep. After the two month supply runs out, they don’t know what will happen next. They say their dietician asked Abbott for a date when another case could be sent, but they got no response. When asked about this, Abbott told CNN that on a case-by-case basis, the company releases limited quantities of metabolic nutrition formulas that were previously on hold for urgent patient needs.
“Our number one priority is to provide infants and families with the high-quality formulas they need, and we are working with the FDA to quickly and safely reopen the facility so that we can alleviate the formula shortage at the facility. nationwide,” Abbott said in an email.
But until the formula situation is rectified, Long and Wechsler recommend that families considering rationing their formula really talk to their pediatrician first to determine what the right approach is.
“Don’t try to do it alone at home,” Long said.