EoE Affects Many Aspects of a Child's Quality of Life, Advocate Says

Colette Romero, whose son has eosinophilic esophagitis, describes the psychological impact the disease has had and also how they have worked to overcome challenges.

Transcript

What impact has eosinophilic esophagitis had on your child’s quality of life, not only for diet but also psychologically and at school?

So as a social worker, we usually look at things kind of through a biopsychosocial lens, and, you know, it's had a great impact on all of those factors in his, in our life. You know, from the physical perspective, it's a lot of doctor's appointments. He’s had almost a dozen upper endoscopies. That means going into the hospital and getting put under anesthesia, and it's just, it's anxiety provoking for all of us. And there's the pain and discomfort that comes with the symptoms, the pressure, you know, to eat enough calories when he doesn't feel like it and he doesn't have that internal drive necessarily.

And then there's the malnutrition, which does impact his energy level. He's anemic because of the malabsorption issues that come along with it. And yet he can't tolerate iron. So we haven't been able to resolve that issue, which kind of exacerbates his stamina, like when he's running or swimming or something that takes a lot of lung capacity, like he'll get tired and then it'll trigger his asthma as well. So it's been tough in that regard.

And then with regards to the psychological impact, just the anxiety and feeling different than other kids, not feeling exactly as his peers do. I mean, food is a huge part of our lives. And you know, he can never have a school lunch. Every birthday party or playdate, mom has to pack him a meal or special cupcake or something that is different than everyone else. At school he has to sit at a different table because of his severe life-threatening food allergies. There's just a lot of feeling different and wanting to fit in and feel normal.

But you know, he's very adaptable and he's gotten used to it, but he's also had to be in therapy to kind of help support him. Just prior to kindergarten, he was at the very low weight, and he was not even on the growth chart. And his doctor, his gastro doctor said, we're going to need to give you a feeding tube. And so I did my research and decided instead of doing that, why don't we try everything we can. We applied to an inpatient feeding program at Children's Hospital of Orange County, and were accepted. When he was 5 years old, right before going into kindergarten, we went inpatient at that hospital for a month. And it was a comprehensive interdisciplinary program, with doctors, nurses, occupational therapists, speech pathologists, social workers, and it trained both of us to understand how to get him enough calories by eating and kind of just understanding like what a normal meal for a child should be, and how to get him enough nutrition to be successful. And at that time, he did go on a hypoallergenic food supplement,he's on Kate Farms, and it's a high-calorie, hypoallergenic formula. And he still drinks 2 of those today to augment his oral nutrition. So that, plus just knowing how much he has to eat, he's been able to avoid the G-tube, which is really has been really important for him. Because he didn't want to go through that unless he absolutely had to. And so it was his determination to do that, which kind of has kept him on this path of growing and understanding what it takes to get through without needing that G-tube.