‘Life or death’: Teen with chronic disease relies on formula to survive

Published: May. 23, 2022 at 2:09 PM CDT
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LUBBOCK, Texas (KCBD) - The baby formula shortage is causing concern for one family native to Lubbock - not because of their infant, but their 13-year-old son. Teenager Eli Rouse has eosinophilic esophagitis or EoE. It’s a chronic disease of the esophagus, in which white blood cells build up to fight food that the body is interpreting as an infection. That buildup causes blisters in the esophagus, hernias, and constriction in the GI tract.

Eli’s mom, Rachel, says there are many foods his body reacts to. He’s anaphylactic to dairy, and egg, and she says he’s highly allergic or reactive to every other food. Other than blended bananas and a blend of apple, strawberry, and banana - he relies on a specialized formula called Elecare that is hypoallergenic, amino-acids based, and non-dairy to get the nutrition he needs. He gets that formula through a 10-hour feeding overnight through a g-tube.

When Abbott Nutrition recalled several of its formulas, Rouse started looking at lot numbers and found the can Eli had used the night before was included in the recall. As Eli has relied on Elecare most of his life, Rouse was worried to start the journey of finding an alternative.

“I kind of put all of that aside and started making phone calls of OK, what’s the next option? What do we do now? To make a switch, you kind of wonder what’s that going to do to his body, how is he going to react to it?” Rouse said.

He got one can of Vanilla Neocate - before the Durable Medical Equipment company, which supplies all of Eli’s feeding tube supplies and formula, called and said it was out of stock. He switched to the unflavored Neocate, which he’s been on for 2 months now, but Rouse says her family and the DME are in the dark about what’s next.

“There are actually a lot of people who still have the contaminated Elecare and are having to mix it up and boil it, hoping to clear any bacteria that may be in it. So, we still have all of his recalled formula sitting in our living room just in case, because we know that it may come to a point that that might be our only option - to risk it.”

Rouse says one of Eli’s doctors believes he got salmonella from the recalled batch after he presented symptoms in line with an infection. As Eli can’t try alternatives like goat’s milk or breast milk, Rouse says they are stuck playing it by ear and figuring it out one day to the next.

“I mean, this is his main source of nutrition and he cannot eat enough. He doesn’t have enough options of foods that he can eat. It could mean life or death if he doesn’t get this. I mean, it’s just like you and I not having food. And it’s that same situation for him, he doesn’t have food if the formula is gone.”

For Rouse, she says it’s important to raise awareness about this disease because not many people have heard of it.

“When you think about a formula recall, your mind does go to babies - and of course - I mean it’s devastating. I can’t imagine as a mother not having formula to feed my baby. And it’s the same situation for Eli, for other kids who depend on this. And it’s not just kids, it’s adults as well that have not just EOE, but other diseases or other health issues that they rely on this formula to survive.”

She says during this time, it’s important for people to give parents grace. Breastfeeding isn’t an option for every family, whether they have infants or older children.

“This is a scary time for parents. It’s a scary time for kids. Eli is old enough to understand what’s going on and he worries. And so just having grace for the parents, for the kids who are dealing with all of this, I think is one of the most important things. It’s hard to get online and see comments of, ‘you should just do this’ or ‘you should just do that.’ Trust me. If we could, we would. But it just may not be an option.”

The Rouse family moved from Lubbock to the metroplex in 2014 because Eli’s specialists are all in that area. After the move, they were able to connect with other families who are affected by EoE.

“To be in an environment where we’re with other people who get it and who understand the struggles and who are able to help answer questions or guide through all of this has definitely been amazing, And it’s been really special for Eli to get to see other kids that, you know, they have this too. They have a G-button too so that he’s not so alone.”

Friday the FDA approved the first treatment for adults and children 12 and older with EoE, Dupixent. Rouse says this isn’t an option for Eli, though, as the only way to monitor if it’s working is through upper GI scopes and biopsies. Eli can’t be sedated. Six years ago a pharmacy filled his prescription wrong, and he was given 20 times his dose. Rouse says he took almost two years of medicine within one month. She isn’t sure if Dupixent is something Eli can try in the future, since they don’t know the long-term effects of his overdose.

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