The DME Conspiracy: Unlocking the G Tube Options They Don’t Want You to Know
Did you know that In-N-Out Burger has a secret menu? I didn’t—until a few years ago, when a friend casually mentioned it during a lunch date. I was floored. Here I thought I knew everything about my favorite burger joint, but there was a whole world of options I’d never seen on the menu board: Flying Dutchmans, Monster Style burgers, 4x4s, even Neapolitan shakes. None of these were listed, yet you could walk into any In-N-Out, order them with confidence, and the staff would know exactly what you meant—no questions asked. It was like being let in on a delicious little secret, one that made every visit feel a bit more special, a bit more in-the-know.
I share this because, as G-tube moms, we often face a similar “secret menu” situation with our durable medical equipment (DME) providers—and it’s a secret that can make all the difference for our kids. I discovered this truth during a conversation that changed the way I advocate for my daughter, Millie, and I want to share it with you so you can unlock the options you deserve, too.
A couple of weeks ago, I was on our weekly Special Needs Mom Coffee Date—a virtual Zoom gathering I host for moms like me, where we sip coffee in our own homes, share stories through our screens, and find strength in a community of moms that understand. That afternoon, I was chatting with a new mom in the group, Emily, whose son had recently gotten a G-tube. Her video feed showed her sitting at her kitchen table, a mug in hand, but her eyes were heavy with the kind of worry I knew all too well. We got to talking about formulas, and she mentioned how frustrated she was with her DME provider. “They don’t carry the brand my son needs,” she said, her voice tinged with resignation as it crackled through my laptop speakers. “I can only use the one they gave me, but it’s not working—he’s been so fussy, and I think it’s upsetting his stomach.”
I listened, my heart aching for her, because I’d been in her shoes. When Millie first got her G-tube, I’d accepted whatever the DME provider sent us, assuming that was my only option. I’d struggled for weeks with a formula that made her bloated and irritable, her tiny cries breaking my heart as I tried to soothe her to sleep. I felt powerless, like I was failing her, until a seasoned G-tube mom in an online group let me in on a little secret: DME providers often have access to more options than they advertise—you just have to ask. It was like discovering In-N-Out’s secret menu, but for G-tube supplies, and it opened up a world of possibilities I didn’t know existed.
I turned to my screen, wishing I could reach through and give Emily a reassuring hug, and said, “Honey, just call and ask them. I promise, even if they’re not advertising it, they can get you a different formula—100%.” She looked at me skeptically, her brow furrowing on the Zoom window. “Really? They made it sound like this was my only choice,” she said. I nodded, smiling through the camera. “Trust me, I’ve been there. They don’t always tell you what’s available, but they can help if you push a little. You’ve got this.”
A few days later, my phone rang, and Emily’s voice burst through the line, brimming with excitement. “Sarah, you won’t believe this! They’re sending me the formula I wanted—it’s already on its way! Thank you so much for helping—I would’ve never known!” I could hear the relief in her voice, the kind that comes from finally feeling like you’re doing right by your child. I smiled, my heart swelling with joy for her, because I knew how much that small victory meant. It wasn’t just about the formula—it was about realizing she had more control, more options, than she’d been led to believe.
That moment with Emily reminded me how easy it is to feel stuck as a G-tube mom, especially when we’re already overwhelmed and exhausted. We trust our DME providers to give us what we need, but sometimes they don’t tell us the full story—not because they’re trying to hide anything, but because they assume we’ll settle for the default. It’s like walking into In-N-Out and ordering a plain burger because you didn’t know you could ask for a Flying Dutchman. But here’s the secret: you can ask. You can call your DME provider and request a different formula, a different tube size, or even a different brand of supplies. They might not advertise it, but they often have access to more than they let on, and they’ll work with you if you advocate for your child.
I’m sharing this with you because I don’t want you to feel trapped like I did, or like Emily did. You deserve to know that you have options—options that can make your child more comfortable, reduce their fussiness, and give you both a little more peace. So take a deep breath, pick up the phone, and ask for what your child needs. You might be surprised at what’s on the “secret menu” waiting for you. And when you get that formula or supply that finally works, you’ll feel the same relief Emily did—the relief of knowing you’ve unlocked a better way forward for your baby.