Episode 99: Debi Lewis
0:00 / 21:44
Mothers of Misfits00:01

Welcome to the Mothers of Misfits podcast. Join me for conversations about how to advocate for our kids in a one size fits all world. Be sure to subscribe so you never miss an episode.

Emily Melious00:17

Welcome back everyone to another episode of Mothers of Misfits. We're joined by Debi Lewis today. She is the author of Kitchen Medicine: How I Fed My Daughter Out Of Failure To Thrive. She's also written for the New York Times, Bon Appétit, Huffington Post, Romper, Wired, and more. And now she lives in the Chicago suburbs with her husband and two teenage daughters.

Debi, thanks for coming on today.

Debi Lewis00:44

I'm so glad to be here. Thanks for having me.

Emily Melious00:47

Yes. Well, um,

The impact of diet on kids

we've been actually talking about food, um, here and there on the podcast and the importance of food and diet and understanding how that impacts our kids, other diagnoses and behavior. So, uh, you, you really had some struggles with your daughter from the start.

So can you kind of take us all the way back to that and really share with us why did you write your book? What was going on with your daughter that prompted you to want to share your story with others?

Debi Lewis01:16

Sure. Um, well, my daughter was born in, um, what seemed like a relatively straightforward manner, um, a little small, but other than that, relatively, um, nothing to, to, to raise your eyebrows at. Um, but very quickly we saw that there were, there were things, especially when she started eating solid foods that were challenging.

Um, she didn't seem to like anything that had any texture to it at all. She ate very, very little solid food. She much preferred to breastfeed. Um, and, and, and there were things that were odd about it, pocketing food in her cheeks for hours on end and that kind of thing.

Um, and when she was a year old, we discovered, um, along the way, she'd had quite a few respiratory infections.

And so, um, they all landed her in the hospital, which was unusual for a baby as most people know, babies get cold. So usually they don't have to be hospitalized and it turned out she had a congenital heart condition, um, uh, an abnormality in the way that her aorta came up out of her heart. That required what sounded to me like a very big deal, surgery.

But the surgeons assured me, this was one of the easiest ones that they did. And we were also told that that was sort of going to resolve the problem. Her esophagus had been compressed. And so we could just move on and she would suddenly grow and suddenly thrive. And that didn't happen, um, rather than give away everything in my book, because I'd love for people to read it.

Um, I will say that the mystery of why my daughter could not seem to eat enough or quickly enough went on for nearly nine years. Um, through all kinds of different specialists and ways of trying to address the issue, um, and what it turned out to be had absolutely nothing to do with what she was eating.

Um, and. But, but along the way, we tried everything. Elimination diets, medications, strategies for, you know, when you eat and how long before you sleep and all kinds of things like that.

And I think when parents are told that their children have failure to thrive, I will speak for myself, but also for a lot of moms I've talked to.

That moms tend to hear that as failure to feed. That if your child is failing to thrive, it must be because you're not doing the right thing. Your not feeding them enough, or the right kinds of things or being persistent enough, or maybe you're being too persistent. And, um, and that's painful to hear as a parent. Um, when all we want is for our children to thrive the idea that they're not thriving and I'll put that in scare quotes, um, is really it's painful to hear.

And so why I wrote book was because it wasn't my first. It wasn't my fault and it isn't your fault, parents out there whose children are diagnosed with failure thrive. It's a very vague diagnosis, that um, should be the trigger for the medical system to do much more thorough investigation, not point the finger at mom and ask mom to give the child another protein shake. So this book is moms, and dads and caregivers of all kinds.

Emily Melious04:28

Hmm. And I feel for you because you know, as the front line of advocating for our kids, particularly when they're that little, and we're in many ways, the only advocate for our kids, it is extremely frustrating when we don't feel listened to. And it makes us think we're crazy. Right. You know, maybe am I what's wrong?

Am I seeing something that nobody else has seeing? Am I just being a panicky mom?

You know, and we go through these thoughts and question ourselves and self doubt, and it can be a really ugly, helpless. Uh, tough, tough mental place. And I'm sure you had those ups and downs, but clearly pushed through on behalf of your daughter.

What to do when medical professionals don't seem to be listening

So in your book, you talk about a lot of medical professionals who, who did not, at least from your perspective, seem to listen to you. So let's dive deeper into that, in that.

What advice would you give to parents feel like they're in that same position? Where, it's like they keep saying it, and saying it, and saying it and no one's really hearing them.

Debi Lewis05:37

Yeah. Well, I think, you know, there's this saying that if what you have is a hammer, everything looks like a nail.

And I think for doctors, that's true. When they, once you get into sort of pediatric specialty medicine, if you are a doctor that focuses on the gut, then you are going to look at problems that have to do with the gut.

And you're not necessarily looking at what is touching the gut. What else is involved? What what's, you know, what other bodily systems have this, has this child had challenges with? So the one thing that I wish I could have done. And I would recommend other parents try is to connect to the specialists, with each other. To ask in a really pointed way and in, um, in a way that doesn't give the doctor an opportunity to give up on it, to say, this is something that happened to my child when they were younger.

Is there any, is there any connection, could there be any connection? Would you be willing to chat with this other doctor? That's one thing I think, coordination of care is not something that's built into our medical system here. Um, there's not a lot of team meetings when it comes to a kid who's not actively hospitalized.

Right. So, um, so I think that's one thing, but the other is, if, if something tells you, something's into your gut, this isn't right, this person isn't listening. Go to someone else.

Um, I know that that is a very privileged thing for me to say, because I had time and I have resources. Um, and so I recognize that being able to do that is something that comes with a lot of privilege.

But, um, if it's possible for you to take another stab at it with a different doctor, it's exhausting to keep doing that. Um, but it is really, it's really important. Um, and then the third thing I would say is to, to ask questions that, force the doctor to think past the kind of cookie cutter response they give to everyone.

So I'll give a really simple example. Um, if a doctor says, well, your kid's got, you know, had a stuffy nose for a couple of weeks now, I think I'll just, you know, do around antibiotics. Let's see if that kills it off. One of the things you could ask is, um, why would you suggest antibiotics at this point?

What are you worried might happen if we don't and I'm not anti-antibiotics, I think there's, you know, when you have a bacterial infection, you usually need antibiotics. But, um, so that's just an example, but the question of what are you worried might happen if we don't do this, is really important because sometimes they, you know,

doctors are also in a flawed system, where they're left with very little time with each patient. Not because they don't want to spend more time, but because insurance companies give them 15 minutes, and practices busy and etc. So if you can say what would happen if we don't? What are you, what are you worried about?

Or if this was your child, what would you do? I've asked that question of a lot of doctors. If this was your child, what would you do? And you'd think they'd give you the answer that they give themselves also. But sometimes that gives a doctor pause to think harder, and to, and to, you know, take a step back.

So those are three things I would recommend.

Emily Melious08:50

I love those questions. They're simple to ask, but powerful and I can sense how they would shift the conversation, particularly the, what would you do if this was your child?

Debi Lewis09:00

Right.

Emily Melious09:00

I'm a big fan holistically. Inter-connectedly uh, you're so right, our medical system is really built in silos, and unless or until, we as parents bring that together and create more of that team, uh, it, it, it's easy to not, not ever get those different, um, parts of the puzzle speaking to each other.

Debi Lewis09:23

Right.

Emily Melious09:23

You actually considered suing one of the doctors, uh, who had misdiagnosed your daughter.

Debi Lewis09:28

Yeah.

Emily Melious09:29

Did you pursue that?

Debi Lewis09:31

No, no I didn't. And I, and, and once again, the reason I didn't comes from a place of, of real privilege because, um, in the end, the whatever financial settlement might have come from that would really not have made a meaningful difference in my daughter's or our lives. Um, she didn't, and most importantly, she did not end up with lasting.

Um, expensive complications from what happened. So we didn't need money for her care. And we were always going to be able to pay for her to go to college. So that comes from, uh, you know, all kinds of privilege. Um, so partly the answer was is money, going to make me feel whole? Is money going to make her feel whole?

And the answer was no. Um, and also I knew that, um, Often with, with a legal settlement. There's, uh, there's a gag order. There's a, uh, a requirement that you not speak out about these things. In the case of the diagnosis that Sammy was given erroneously eosinophilic esophogitis. Um, I wanted a protocol change in how patients are diagnosed with this.

Um, and the protocol changed could, could have saved us years. Years of endoscopy's, elimination diets, medications. Um, and I want parents of children diagnosed with this to ask for this simple test and, and it's, it's a pretty much a yes or no answer. And so if, um, if this test comes up with, with no compression on a child's esophagus, feel reassured that the diagnosis is correct.

Um, so it does doesn't slow treatment. Um, but it could stop unnecessary treatment.

So what I wanted most was to be able to talk about it. Um, and I'm a writer. I studied writing and, you know, undergraduate and graduate school. And I processed my feelings through writing and I wanted about it. So pursuing legal action, I worried would keep me from being able to do that.

Um, and I think we're quite litigious in general and, and in ways that, that maybe perpetuate the system of feeling like the only way you can get a closure or an answer is to sue someone. And if we a break in and stop suing people, maybe doctors will feel more free to talk about the things they'd like to do differently.

Emily Melious11:49

Yeah and it might put them less in that defensive position, or I'm going to give antibiotics because of what could happen or the worst case scenario, whereas it may not be necessary right now in the process. Right? A lot of there role, and I, um, don't, you know, envy them for this. Is just to prevent all the worst case scenarios and be in a constant risk mitigative position.

And in some ways sometimes maybe go overboard if you will, in that caution, and sometimes even in treatment. So as to prevent the worst, but

How to know when a diagnosis isn't right?

I'm curious to know if you lived with this erroneous diagnosis for years. What made you get to the point of saying, okay, this is not right. Or was it another doctor who said, um, you know, we have been going down the wrong road.

How did you realize, ooh, we, we need to get a better diagnosis. The right diagnosis.

Debi Lewis12:43

So it's a complicated answer, but the truth is that the particular disease, um, this eosinophilic esophogitis, which is a, um, an autoimmune disease and, and, um, results in an eczema like on the inside of the esophagus. Um, which can be measured in a lab, cells under the microscope. Um, it's a, it's a disease that um, that it can only be diagnosed in remission or not in remission via endoscopy and biopsy. Right?

So we had a period of time where my was actively sick, struggling to swallow, gagging all the time. And I thought for sure, her next endoscopy would uncover a you know, recurrence of, of this disease in her esophagus, but it didn't, she was very, very symptomatic and totally in remission from this disease. And it was only at that point that a doctor, um, on the phone suggested, um, that there might be a problem with the way her esophagus moved. And I was able to say, yes, there is based on her, the congenital heart condition that she had, and his response is sort of, um, climax of the book.

Um, so I don't want to give it away too much,

Emily Melious13:56

Oh, these are so many teasers Debi! Okay.

Debi Lewis13:59

I know I hate to do it, but you know, I'd love for people to read the book. Um, I have heard people describe it as a medical mystery and a real page turner. And so I'd love to keep people reading, but there was, um, it was something that the doctor said that propelled us to a new, um, into a new direction, um, that led to a surgery that changed her life forever, for the better!

Emily Melious14:21

Wow.

Creating a 504 plan

So, your daughter's school, uh, how did they support your family during this process? I cannot imagine lunchtime.

Debi Lewis14:31

Yeah, it was hard, but I will say that the, you know, the American public school system has something in place called a 504 plan. That you can do in any public school. And the 504 plan is different from an IEP. It's not about learning. It's about, um, physical health issues and conditions. So we had a 504 plan for Sammy, um, during the elimination diet, um, that stipulate it.

And we were able to meet with the school before the school year started. It started, it was during her kindergarten year, which was awful way to start the school year, but they were really lovely about it. Um, we made sure that the rules were, a few things because if they were followed, then there would be no issues.

One was that, um, she was not allowed to eat anything that didn't come from home. So, you know, class snacks and all that kind of stuff, she just had her own little bin things.

Um, she, um, we had to Play-Doh out of the classroom because Play-Doh is made with wheat. Um, and so we offer, we provided, um, modeling clay as an alternative.

Um, so that was one of the things. And then the third thing was we asked for two days, notice, for class treats so that we could provide a similar alternate. Um, and the school was generally very good about that. The school administration was lovely about it. The individual teachers were a little hit and miss.

There were a couple of teachers who offered her foods that they shouldn't have, but thankfully she was smart. She was able to say, no, she remembered the rule. Um, and, um, and I was able to, you know, kind of make it up to her later for the cookie that she was offered and the popsicle that she was offered. Um, So those things were really great.

And then we had a couple of very, very dear friends. One of whom was in, had a kid in my daughter's classroom who, when it was turn for snack, brought things that Sammy could enjoy with the kids, things like whole clementines, whole bananas, that kind of stuff.

Emily Melious16:24

Yeah, which is good anyways. I would love that for snack. Yeah, Oh.

Debi Lewis16:28

Exactly.

Keeping a healthy relationship with your kids through the diagnosis process
Emily Melious16:30

So let's talk about Sammy and how did she feel through all of this? It's it sounds like she didn't know any different, but I'm sure once she got into school, especially she realized that she was different. She was a misfit.

And I know it's hard to say, no, you can't have the cookies that the other kids are eating or the cupcakes, or, um, you know, how did you keep her mentally healthy in general. And then I'm also really curious, how did you keep her having a healthy relationship food through all of this?

Debi Lewis17:02

Yeah, that is the million dollar question. Right? So, um, I, I will say Sammy's, um, always had a taste in food that is unlike a lot of other little kids. Um, she, her favorite food was always fruit from the moment that she started eating solid foods. And so, because fruit was never off the table. Ever. Throughout any of these diets that she was on. She always had the things she liked the most, and that is just dumb luck, you know?

Um, she wasn't, and, and the other thing would be that the things that were hard for her to swallow comfortably were things like cookies and cupcakes and cakes, and, you know,

Emily Melious17:41

So in your favor!

Debi Lewis17:43

It really did. She didn't like those things very much. Um, and so the only things that were, that were hard were, you know, were, were parties and gatherings and stuff.

And we, I worked really hard to make sure that we had alternatives for her. I think the lucky thing is that when they're very little, like you said, they don't know any different and she. She didn't know any different and, um, for better or for worse, especially on a six foot elimination diet. One of the things that is easiest to give kids are things that are actually mostly chemical, which is, you know, not, would not have been my first choice, but for example:

Betty crocker fruit snacks. Totally safe on an elimination diet, and so, um, cause they're mostly artificial flavors, glucose and sugar, right? Those are fine. And so, um, the fact that she could have fruit snacks, which is something I'd never had in my house before then was such a treat that it, it worked out fine.

But the, to your second question about how we made it um, possible for her to leave this experience with a healthy relationship with food. Um, talked, we did not use like bad food, forbidden food, no food.

What we used was safe and not safe. Um, and, and that was because of the way her esophagus was built. And so we were able to frame it, not that this is a bad food, but this food isn't safe for you right now, or, you know, this is, and we also framed the elimination diet as a science experiment.

We're going to try each foods, you know, we took them all out to begin added one at a time. First, now we're going to try eggs. And we're going to do an experiment and see if your esophagus likes eggs. And so it, we took all the moral value out of food entirely.

and I, I think that's important regardless of whether or not your kid is struggling with food. This idea that, you know, some foods are good and some foods are bad and, know, unless you have an allergy or a condition, like what Sammy was diagnosed with. Food is neutral. It's food. It's fuel. And you know, having a healthy relationship with food as an entity to me, was much more important than whether or not my daughter liked kale, you know?

Emily Melious19:57

You're right.

Debi Lewis20:00

Yeah, I think that parents can get very, over attentive to how many grams of trans fats and how much genetically modified blah, blah, in their children's food. And of course we want our kids to eat healthy foods, but I written with great affection about both Brussels Sprouts and Oreos. Um, they're both delicious and we're both

Emily Melious20:25

Amen to that.

Debi Lewis20:26

Pretty that. much equally excited about eating both of them.

Find Debi's book!
Emily Melious20:30

Yeah. So where can everybody get their hands on your book?

Debi Lewis20:34

Oh, absolutely anywhere. Um, you can order my book from anywhere you like to order books. If you have a local independent bookstore, I'd love for you to support them. If that's not for you, you can order it on Amazon or BookShop.org or Barnes and Noble. It is available wherever you'd like to order books.

Emily Melious20:52

Okay. And we can. Get in touch with you at DebiLewis.com, uh, and at Twitter on @GrowTheSunshine. So I'm sure we're all going to connect with you there. We'll we'll also be sure to connect with your book in our Episode Insider's newsletter, which everybody can sign up for at MothersOfMisfits.com.

Debi, thank you so much for sharing your journey, emboldening us as parents and advocates for our kids. Um, and teasing us! Now I think we all need to know, you know, how this mystery turns out exactly. At least we all know there's a happy ending. So thanks again!

You're welcome. Thanks for having me!

Thanks for joining us for this episode of the Mothers of Misfits podcast. Make sure to subscribe so you never miss an episode. We also invite you to visit us at MothersOfMisfits.com