[00:00:00] Speaker A: Presented by Feed Matters with host Jacqueline Peterson and Dr. Haley Estrom.
Feeding does Matter.
[00:00:13] Speaker B: Hey everyone. Welcome to Feeding Does Matter. I'm Jacqueline Peterson. I am here with my co host, Dr. Haley Estrom. I always love these podcast sessions where we get to hear from our consortium members and other family members about their lived experience.
And so I am really thrilled to turn it to you to introduce our guests for today.
[00:00:34] Speaker C: Yes, I'm very excited to introduce David Schnitzler.
It's really exciting to have members of our family centered PFD Research consortium. And David is a parent of two children with feeding difficulty. And so it's always fantastic, especially to have a dad to be with us and to give us that perspective from the, the father's point of view as well. And so to have a parent of two children with feeding difficulty or differences and then also to have a dad from the consortium.
So wonderful. We're so glad to have you here with us, David.
[00:01:15] Speaker A: Thank you so much. Jacqueline Haley, thrilled to be here. I've listened to most of the episodes, all of the guests and, and it's always wonderful to hear from other families. I think you always pick up a little bit and you, you understand that you're not alone in this journey.
[00:01:28] Speaker B: That's what we really hope people can take out of this, is that it's such an isolating journey, but there are so many of you out there that can support one another and we're here as Feeding matters to support you as well.
So maybe David, let's start by just sharing a little bit about yourself and your family.
[00:01:45] Speaker A: Yeah, definitely. So my name is David Schnitzler. I am a stay at home father to two young boys. I've got two year old Griffin and a three, almost four year old Winston.
Been married, coming on 11 years.
Wife has a very active schedule at work. So day to day I'm managing all the household, all the feeding, of course, all the medical, everything else and keeping the, the house running so that when wife comes home we can enjoy more time as a family.
[00:02:20] Speaker B: Love that.
It's so much to carry all of that mental load and keeping things running. And especially for children that do have feeding difficulty or PFD or arfid, it can be very challenging. Maybe just start sharing about your story and your children and what you feel comfortable sharing with us.
[00:02:43] Speaker A: Certainly. So as you mentioned, Haley, I've got two boys, both with feeding difficulties. So our story is intertwined in some sense, but they've also got unique stories. So I'm going to kind of run down Winston's and we'll go into Griffin's as well.
Winston is our older, as I mentioned, he's almost four years old. His first six months of life were completely typical in every respect. No feeding, no medical, no development, nothing like that.
So just around his fifth month birthday, we introduced solid foods for the first, first time he'd met all his milestones. He was sitting, he was showing active interest in food, he was chewing along, he was giving us every indication that he wanted food.
We gave him the food. He was doing perfectly fine, perfectly age appropriate.
At six months is where our journey kind of began. He had his first anaphylactic allergic reaction at that point. That was the peanut butter.
It was a very severe reaction. Required a total of three doses of epinephrine, two night stay at the sublevel icu.
But we returned home after that, went back to solids, obviously avoiding all the common allergens. But he did fine.
Couple months later is where the feeding journey really begins. At around 8, 9 months, he decides one day that he is absolutely not going to accept any solid food whatsoever. Pursed lips arched back, hands outstretched, like, no way, you're not putting anything anywhere near my face. And it was very abrupt for him.
I know for a lot of kids it kind of gradually turns to that, but for him it was like a switch just flipped one day and nope, not doing solids anymore.
So he began feeding therapy right around nine months and he's still been in feeding therapy this whole time. So coming on, I don't know, three, three and a half years, nine months goes, 12 months goes, he's still 100 formula fed. We do our first EGD. At that point that was mostly normal, but you know, we, we get out of that and they tell us, you know, continue doing your feeding therapy, see what happens.
Not much there. He, he hadn't really made much progress. But what we were getting is medically there probably wasn't much going on there.
Around that point we also became pregnant with Griffin. So just something that I had in the back of my head at that point.
A few months later, at 15 months, again, no change. He's 100% at this point. We'd switch to children's nutritional shake. So he's no longer an infant formula, but pretty close to 100% of that for his calories and his nutrition.
And at that point he, at 15 months he stopped accepting that and stopped accepting water, which for about a month period, it was a full time job just to keep him hydrated and fed. Following him around the house Getting him to take, you know, one little sip at a time of the water, a little bit of formula through the bottle.
What finally worked to flip that switch is to introduce screen time to get him to take his nutritional shake, which unfortunately to this day we have been unable to shake off, but it was needed at the time.
Today, again, he eats his food and then immediately thereafter he drinks his shake. But it's with the show and for him, I think today it's almost more of a comfort. Food is very hard for him.
So he knows that at the end of that, he gets a shake, he gets a show, he gets to kind of move on with his day.
So around that point as well, again, he's 15 months. I started having more fear that this was, this wasn't a phase. I mean, this whole time, those six, nine months, you hear from everyone around you, oh, it's a phase. They'll outgrow it, they'll start eating.
[00:06:46] Speaker B: I was gonna ask if that's what they were telling you when you were trying to seek care, was it that it was just a phase or what kind of guidance given?
[00:06:54] Speaker A: Certainly, I mean, our pediatrician and I love our pediatrician, I don't mean this in a negative way whatsoever, but our pediatrician was like, yeah, it's a face and sheet was the first one to her credit to introduce us to feeding therapy and refer us to that. But, you know, it's a phase from there.
Our GI at the time, and we've moved to a different GI again, He basically just said, keep going with feeding therapy.
They'll get past this.
Family members, friends, neighbors. Like, you know, kids do that. You know, have you tried giving them something sweet? It's like, oh, no, I hadn't thought of giving them something sweet. I hadn't thought of giving them, you know, their old favorite food.
Thanks.
But anyway, around that point is where I, I was finally internalizing, like, this is not a phase. Buckle up. This is something that we're going to be in for the long run. Right?
So I started joining at that point, online communities. I got around that time connected with Feeding Matters as well.
I, I did webinars and seminars both with Feeding Matters and others. I was kind of all in on trying to learn and tackle this as best as possible.
And at that point, I started having fears as well. For our soon to come second child of, you know, what's going to happen with his feeding. I'm feeding Winston at this point. Four bottles a day, a couple times a day. We're trying to do solids. Infant Meets bottle. What is it like six times a day? Like, logistically, how's that going to work? I don't know.
So around that time as well, again, 15 month or so, Mark, he started having other developmental delays and other concerns emerging. So we enrolled in early intervention for Speech and nutrition.
Eventually added on OTPT and DT1 of the. And I'm going to focus here for both Winston and Griffin on things surrounding food because we'd be here all day otherwise. But one of the things that emerged was ritualistic behavior for Winston and very repetitive behavior as well, which when it and it impacted all facets of his day, but particularly when it came to food, it was even more disrupting and more time consuming.
So we tackled on a couple medical specialties at that point as well.
Anyway, just before Griffin was born, Winston finally switched from bottle. We'd been feeding him with a bottle at that point to straw for his shake, which was a great win for us. And he started eating in a meaningful way again. Huge one. He was about 18 months old, finally started eating.
It was mostly at the time, foods that came about through food chaining. So we'd prior to that discovered certain things that he would eat. Honey, sun butter, cream cheese, things like that small amount. And we very carefully and slowly, methodically chained and got to the foods that for the most part, he eats today.
And those are really his staple meals that he's had that he developed around 18 months. For the most part, they're the same meals that he has today. And I use meals.
We're on a podcast, but air quote meals.
They're. They're not what you'd expect a 2, 3, 4 year old to, to be eating for their meals, but their meals for him.
So since that point, 18 months to today, he's almost 4 years old now. We've had lots of ups and downs, lots of plateaus in between, but the constant that's remained throughout that time is a high level of stress for both us and Winston surrounding mealtime.
Yes, he eats, but he requires a high level of verbal prompting to eat. He gets into food jacks, but he doesn't really have any replacement foods, so those become troublesome.
He's got nutritional deficiencies that we've worked through.
His skills are emerging.
For instance, again, he's almost four. He's really just now learning to use a fork and a spoon, which is again, a great win for us and for him that he's willing to do that now. But.
[00:11:28] Speaker C: Is that an example of how you say meals look different for him than how they would look for typical age here.
[00:11:37] Speaker A: It does. When I said that, I meant more the food itself.
[00:11:40] Speaker C: So like the foods or the amounts?
[00:11:44] Speaker A: It's the food.
[00:11:44] Speaker C: Okay.
[00:11:46] Speaker A: You know, one of his most common meals are fig bars, which, again, Most parents of 3 or 4 year olds probably wouldn't consider that a meal. They'd probably consider a heavy snack or part of a meal. But for him, that's a meal. He eats the same exact thing for breakfast every single day that he at since he was 18 months on butter. So, yeah, I mean, that's kind of where. Where he's at.
He has added several foods since that point, but mostly from a snack perspective. Crackers, chips, that sort of thing.
But for the most part, his meals are the same as what they were when he was 18 months old.
Around three years of age, I was completely burnt out with all things food. So we've been at it, you know, two and a half years at that point.
Winston's feeding was a challenge every single day. We were up to six therapies at that point.
Medical for Griffin was very heightened.
We had his feeding concerns coming.
We hadn't really had progress for about a year with Winston.
And probably most importantly, I was very concerned at that point about what Griffin was seeing and picking up on when it came to meals with Winston, because he wasn't a tiny little infant anymore. He was becoming more cognizant and sitting there with us and seeing. And again, we had, at that point, and I'll get into it, some concerns over Griffin's feeding.
And so I was very concerned of him seeing the shouting and the crying and tension around meal time and associating that, you know, food with. With those negative experiences.
Therapy for Winston had stalled at that point. Food chaining was no longer working.
So I was in a pretty bad place.
I was quite honestly ready to pull the plug on feeding therapy at that point.
We'd had discussions at home on just pulling the plug on food altogether. Just let's just give them a shake and move on with our days because.
And that felt like giving up. And that was one of the biggest things that I think we had to kind of overcome mentally, you know, that parental instinct of not giving up on your child.
And it did feel like giving up. But the big thing that for me, I had to really convince myself of is the stress that was occurring during meal time was carrying out beyond meal time with our relationship with Winston.
And that was. That was unacceptable.
So anyway, three things happened around that point when he was three years old that I Think flipped this script a little bit. One, he started school, he started preschool, and that's been excellent for him to his feeding therapy, or rather the approach of the feeding therapist changed. And three, we did end up pulling back the pressure on meal times.
So I'll talk about that one in particular.
We decided not to fully just stop with food altogether, but to take an active effort to pull back the pressure when a meal time was particularly bad, when he was dysregulated, when it just was clear it wasn't going to work. All right, we'll give you the shake, we'll fortify it so that you're getting your calories and we'll move on with our day.
The result for Winston of those three things has been really phenomenal for him. And again, he's still got his challenges, don't get me wrong.
But within the last nine months or so, he has started showing interest in food, whereas before he didn't at all.
He, while he won't always want to eat it, and I shouldn't say won't always, generally won't want to eat it, he likes to know what other people are eating. He's seeking out words to describe.
[00:15:49] Speaker B: There's like an interest there.
[00:15:51] Speaker A: Yeah, exactly. What he likes about foods, what he doesn't like about foods, being able to describe that and help us help him.
One of the most important and great things for us, he likes going to feeding therapy. Now he legitimately likes going to feeding therapy. He wants to try new foods. And when I say new foods, I don't mean like a cheeseburger, I mean like a single ingredient. Like, let's try the lettuce on a cheeseburger. Yeah, but he wants to try those and he's generally not as willing or able to try them at home. Therapy has become a safe place for him to try those new foods.
Sometimes they don't go anywhere, but often they do.
For instance, just in the last few months, we've added a few fruits. Before, his whole life, he'd only had banana.
Now he'll eat a strawberry, which again, for a four year old doesn't sound great. But for us, it, I mean, it's a huge win.
[00:16:49] Speaker B: It's a really big win.
[00:16:51] Speaker A: It's, it's amazing.
So that's about where he is today.
A little less than half of his calories on most days come from his shake. So he's over 50% calories from food, which is good.
Some days it's less. Again, if, if we just decide to. All right, we're Just going to give you the shake and fortify. It still needs a lot of verbal prompting. He's mostly eating the same as what he did a couple years ago.
Meal times are a stressor every day, but all those aspects are less so. The last nine months or so have been. Have had a lot of great wins for us on. On Winston's end.
[00:17:33] Speaker B: That's just so great to hear in terms of your trajectory and when to know to pivot and to do those things. What kind of learnings do you feel like you have that you may want to share with other families when it's just feeling so, so hard, like you guys are kind of stuck in a corner?
[00:17:53] Speaker A: Yeah.
I kind of mentioned this before. It. It felt to us like we were giving up on him.
And what I really mean, like when.
[00:18:03] Speaker B: You guys decided to take the pressure off.
[00:18:05] Speaker A: Exactly. Yeah, exactly. I'm sorry, because that. That again, I mentioned three things that I think flipped the script for him, and that was the one that we had the most control over was taking the pressure off, which is odd to think about. Right. Because the whole goal.
Goal is to get him to eat. And now you're seeing gains from not trying to get him to. To eat.
And I've heard similar stories from other families as well.
So I think it's easy in retrospect to notice that that was the right time to flip that switch and pull back the pressure in the moment. It's very difficult to. To know that.
So having those conversations, I mean, I had conversations with all his professionals, his dietitian, his feeding therapist, even his speech therapist, like everyone that was around him. And a lot of it, I think, was almost more for me than for him trying to get me to accept that I wasn't giving up on my child, that we were putting, you know, shifting the goals for the moment. And again, with. In our particular situation, a lot of it had to do with Griffin in mind, of not wanting to.
To put that negative association with food onto Griffin as well.
Yeah.
To answer your question, for me, it was talking it through with. With all the professionals around him. We built out a great team. I mean, between. Between both my kids. We have a lot of professionals, and I don't have bad professionals. I mean, if. If we. If we've got a bad therapist or a bad physician or whatever, we don't continue seeing them.
[00:19:52] Speaker B: Yeah. You change it up when you feel like you're not being heard.
[00:19:55] Speaker A: Yeah, exactly.
So talking it through, I think. So at this point, I'll go back in time and introduce Griffin's story.
Griffin was born when Winston was 18 months, if you'll recall. So, you know, I don't know who had that great idea to have two kids that young, but we did.
Griffin was born a little premature. He was born at 35 weeks, so he spent the first week of his life in the nicu.
So whereas Winston's feeding journey began six to nine months depending on how you look at it, Griffin's really began from day one and his started off with vomiting. He started vomiting day one in the nicu.
I don't think a single day went by of his life that he didn't vomit until he was probably 18 months old. So I mean vomiting was a chronic issue for him.
To the point his first ever diagnostic test was in the nicu. They did an X ray of his stomach just to check for an obstruction, which there wasn't.
But anyway, we get discharged from the hospital in the next couple months are mostly the same. He's vomiting constantly, he's a rashy eczema baby. We're regularly working with his PCP, waiting to see GI and allergy.
At 2 months of age we switch from breast milk to formula and immediately notice the signs of cow milk protein allergy which Winston didn't have. Winston had plenty of other allergies, but not that one.
So we very quickly go down the list of formulas. Often you'll kind of do it a little bit slower and more methodically, but with everything that we had going on with him, we went quickly down that list of formulas, eventually landing on amino acid based formula and excuse me, this is one of the more traumatic parts coming up here of our history.
Couple days into amino acid based formula he throws up, which again, nothing new.
Go to clean him off, take off his outfit and he is just red all over. And he, he'd been a rashy baby, he'd had eczema, but nothing like what we saw that day that was on par with what if I had seen on Winston would be at least a trip to the ER if not immediate epinephrine, which I knew enough at that point to know like amino acid based formula probably shouldn't be causing this, but I see that red all over. Then we start noticing his lip flicking. He's flicking his lip almost like it's bothering him or tickling him. Again, infants don't really do that, especially two month old and possibly difficulty breathing. Really hard to tell with a tiny two month old.
But anyway, all those signs are enough to have pretty major concerns. So I call 911 paramedics administer epinephrine at the scene. We're admitted into the hospital, of course, and just to give a little bit of kind of credence to it, he was epi'd again the next day while inpatient because again, the same thing happened.
The physician there decided to do the epi that point.
So that began the next year or so of Griffin's life. A very scary time at the intersection of food and allergies and medical.
Bouncing from specialist to specialist, not really getting any answers and fearing our child.
[00:23:36] Speaker B: Still don't have answers as to why you guys went through.
[00:23:39] Speaker A: No, we don't.
Today we're at a better point. We're at a much better point than he's stable in most things, but yeah, we never, we never figured out what was going on there.
I mean, we bounced around from specialist to specialist and it was, I don't know, the whole way up and down.
So we feared for our child's safety pretty much daily at the hospital. The allergist that came to see us, and she's a phenomenal allergist, she's our primary allergist, but she didn't believe that it was actually an allergic reaction that had happened, which again, it shouldn't in theory have been to an amino acid based formula.
GI at the hospital tells us, you're feeding your kid too much. Feed him less, he'll stop throwing up.
And upped his dose of famotidine as well. He'd been on a relatively low dose that his PCP had prescribed him and gi, you know, upped it.
[00:24:38] Speaker B: So overall advice that was kind of not necessarily in line with what you were looking for?
[00:24:43] Speaker A: No, I mean, we wanted answers. Yeah, we didn't get any answers. We, we ended up seeing a total of three different allergists throughout probably the next six months or so. And there were theories as to what was going on, but one by one we knocked out each theory and didn't end up figuring out what was going on. We ended up eventually getting into seed derm as well, this, that or the other.
After that point, he continued having issues with his. For, again, he was throwing up constantly. But as far as the formula went, and he was again 100% amino acid based formula. Either I was absolutely crazy out of my mind or there was a one to one relationship between him drinking his formula and breaking out in hives and breaking out in rash. There's really no way around that.
It may not have been an IGE mediated reaction. I can accept that it probably wasn't but there was some sort of reaction, some sort of one to one cause between him taking formula and him breaking out in hives and breaking out in rash.
So that was scary. You know, every day, six times a day, feeding your child something that you fear is hurting them and beyond that, I mean he had of course curd as well and this, that and the other, I mean feeding hurt for him. Right. He would cry, he would arch his back, he would vomit and he had all these rashes. So that was not pleasant to six times a day be feeding your child throughout that next year or so.
We averaged going to the ER every six weeks or so, many of them for feeding or allergy, vomiting, whatever you want to call it.
[00:26:47] Speaker B: Yeah.
[00:26:50] Speaker A: And he started having these breakout of hives and rash outside of feeding as well.
They were all, I mean they were during feeding, but outside of it as well. Which made figuring out what foods he was actually allergic to very difficult because he could break out randomly as well.
We did put him on daily Zyrtec, which ended up helping.
His allergist has also come around and both of their boys allergists and admits to me regularly today like your boys are outliers. The, the rules that apply to most patients don't, don't necessarily apply to your boys.
So there, there's something off there as far as food and allergies go. Go with our boys.
So yeah, as I mentioned, we knew he had ige mediated allergies, but he also. One of the other very scary things during that point was with the vomiting and with the widespread rash.
That's textbook Diana Flaxis right there.
[00:27:55] Speaker B: Yeah.
[00:27:57] Speaker A: Which I mean, I can't EPI my kid six times a day.
So it became, and I've used this word several times, but it became scary every single day of balancing. Do I give him antihistamine? Do I have to EPI him?
You know, what else has he touched food wise today? There's just a million questions going around your head when. When all that's going on.
So yeah, not fun.
Which is a good place. If you don't mind, I'd like to stop just very briefly and talk about food allergies because Heidi did talk about this for sure.
But the intersection of dietary restrictions and feeding challenges is absolutely terrible.
Not only are you contending with feeding challenges, but you're also limited by the type of foods that you can even try.
You go to I'm part of plenty. I'm sure many of our listeners are part of Plenty online communities. You go to the allergy communities and the parents are living their worst fears with it. The feeding community, they're living their worst fears. You put these together, it's impossible.
You know, the stereotypical chicken nugget, for example, that a whole lot of our kids eat.
My child cannot eat a chicken nugget. He's anaphylactic to chicken. He's allergic to the breading. He's allergic to the spices.
And the more allergies that you have, it just becomes exponential in terms of the availability of food. So when you've got these difficulties of feeding your child in the food first place, and then you're so restricted by the foods that you can even present them, it's a challenge.
And by cruel fate. Both my boys have differing allergies, which means that every meal time, I have to make separate meals for both of them, and generally for us as well, because I'm not going to eat a fig bar for dinner.
[00:30:01] Speaker B: Yeah.
[00:30:02] Speaker A: But that also means, you know, because it is such an involved process to feed our children, you know, for a lot of us, you're standing up 10 times, maybe from the table to wherever to get something or whatever. When you've got the two kids, you're standing up 20 times.
When you've got two kids with differing allergies that are each allergic to the food that the other is eating, you multiply that by two or three, because I have to make sure that my hands are clean from what the other boy is eating. So that's. That's a very major added challenge in our household, our food allergies.
So anyway, wrapping up here on getting back to, I guess, the end of Griffin's story, by the time that he was getting ready to eat and this was all kind of happening while the strange allergic reactions were happening as well, I knew enough from this feeding world that I've been in with Winston to want to do everything absolutely by the book. Right. I was gonna wait till he was 100% ready to eat. I got the best chair possible. I was gonna follow his lead. No pressure, you know, just make it the best experience that I could for Griffin.
Whereas Winston's aversions came out very much more outward. With Griffin, it was a lack of interest in solid food. So six months came and went. He wasn't ready. Okay, that's fine. Eight months come and go. He's not ready. Nine months, that's where. All right, well, let's try and get this started. So I pop him up on the chair, zero pressure, just interact with the food, have fun. With it, which he did.
He was perfectly fine to sit there and interact with food, which Winston would not have, but he just had no interest in eating it.
Just none at all. So at nine months, I go for his first feeding evaluation. And I so desperately want to be told, you're projecting Winston onto Griffin.
[00:32:16] Speaker B: That's almost an easier answer.
[00:32:18] Speaker A: Yeah, that is not what I was told.
I remember so clearly. Therapist says, I'm glad you're here.
And man, I broke down in the car ride home.
That was just like the worst fears coming true of. And we had the medical and whatnot. But having to go through that journey again, like, I. I just didn't see how that was gonna happen.
Yeah, so not fun.
Anyway, we started therapy at nine months. He's been in it since.
He's at a very different point today than than Winston is, and in a.
I don't want to say healthier, but his. His relationship with food is more typical today than.
Than Winston's.
He started eating at around 15 months, very little at the time, and he's progressed continually since. He is still reliant on a sole source nutrition formula that he's getting 50 to 60 on a bad day, maybe 70% of his calories from, and it is still from a bottle, even though he's well over two years old at this point.
But he eats and he likes eating, and he eats a wide variety relative to Winston. A wide variety of food. He's what most people would probably categorize as like a severe, picky eater.
As far as a toddler diet goes.
His big thing today is either he eats or he doesn't. So there's still something going on there.
You know, he might have perfectly good meals that would be considered perfectly appropriate for a toddler.
And then the next five meals, like, he'll eat a few Cheerios or something and that's that.
[00:34:12] Speaker B: Sure.
[00:34:14] Speaker A: So there's something going on there still. But he, he likes food and he seeks out food, and he's got a much wider palate for it as well.
About a year ago, he was diagnosed with dysphagia, which at the time was categorized as pretty mild. So we didn't thicken or do any major changes at that point. But we continued noticing the signs of dysphagia well after that initial swallow study.
So really pushed to do a repeat swallow study. And that occurred about five months ago or so, which confirmed that his dysphagia was much more severe than what the first swallow study had shown.
So we did start thickening his liquids at that point, the negative thing that came about, that is, again, he is reliant on his sole source nutrition formula.
Once we started thickening it, he accepted a whole lot less of it. He was really just taking enough to satisfy his hunger, and that was that.
And he didn't eat any additional food to compensate, so pretty immediately dropped in weight and luckily plateaued in his drop of weight for about four months. He was neither losing or gaining any weight. Stayed kind of at that point, thankfully, a couple weeks ago. And we've, of course, been trialing all sorts of things in between, because you do that in this world, right? You're. While these stories are, you know, compressed into, you know, these 25 minutes or whatever, there's a lot going on, but behind the scenes constantly. So was working through a lot of different thickenings to try to get him to accept his formula, like, once, like he once did, and finally landed on it a couple weeks ago. Immediately his weight shot back up.
So as of a few days ago, he's now back at the weight that he was five months ago. Hopefully we'll start going up from there.
So that's good.
He does have a handful of procedures under anesthesia coming up in a couple months.
Repeat egd, a couple ENT stuff, esophagus study, you know, you know the drill.
So all that to say we're still working on it medically with Griffin, but I have hope for him that, you know, we'll continue painting that picture medically and be able to make those accommodations to help him develop his relationship with food, however that makes sense for him.
You know, hopefully that means, for me, hopefully that means weaning off the formula, but if it doesn't happen, that's fine too, really. Just working to get to the best possible outcome that both my boys really can. Can have with food, whatever that may look like. So that's. That's where we are today.
[00:37:29] Speaker B: Thank you so much, David, for sharing both Winston and Griffin's story and just kind of the ebbs and flows. And you're so right. It's hard to put all that you've been through and all that they've been through into, you know, this short time period.
And so definitely want to acknowledge there's so much more outside of this that we're not able to share or talk through or any of that.
I know at the consortium, we talk a lot about, like, what's the measure of success for families in this? And so I know that you've been part of those conversations, too, with having two Boys that have such different needs but have that feeding difficulty as well as the allergy intersection, what do you feel like is your kind of measure or even redefined measure?
[00:38:18] Speaker A: Yeah, I mean, I think that looks different for both my boys, and that goes back to the point of every journey on this path is different.
Both have medical challenges. Griffins are much more defined, and we talked about those a little bit more here.
So it's tougher with Griffin. I'd say the measure of success in that sense is painting the picture as best as we can as to what is going on with Griffin. He. He is still vomiting. It's mostly under control today, but with the help of medication and is still gagging.
So those.
That aspect of medical, I think you'd be foolish to believe doesn't have. Doesn't interplay with his feeding. Right.
From a very young age, you know, we talked about him vomiting and him retching and having the signs of acid reflux. Like food wasn't pleasant for him.
Right.
So it's no wonder he didn't necessarily want to eat at six months old.
[00:39:33] Speaker B: Yeah.
[00:39:34] Speaker A: So blame him. Yeah. So the measure of success with Griffin for me is painting that picture as best as we can. Right. And we're at a much better point in that picture today than we were a year ago.
Because however those points may fall, there's different things that we might have to move around to help him increase his.
Or improve his relationship with food. Like we talked about the dysphagia and the different thickening method that worked for him.
You know, one of the suspicions for him right now is EOE. He was negative for it at 12 months. But if he does have EOE, then, you know, we might have to shift some things around as well. So that's my measure of success for him, is painting that medical picture. And from there we adjust. Right.
As I said, I'd love to shift him away from the sole source nutrition formula towards quote, unquote, real food. But at the same time, I feel very comfortable with the sole source nutrition that he's on, that he is getting all the nutrition that his body needs to grow and to thrive.
So if we can't do that, that's okay.
I'd love to get him off the bottle because he's over two years old.
But again, if. If we can't, that's okay too.
So not really a answer to your question. I guess it.
Which is the point. I mean, it's evolving. Right.
You as a parent, you adapt to your child's needs, you take all the information that you can from all your medical specialists, from all your therapists, and you paint that picture and you do what's best for them and for the family.
[00:41:28] Speaker C: I mean, I think that's the helpful answer, is hearing all the considerations that have to go into that equation.
[00:41:35] Speaker A: Yep.
[00:41:36] Speaker B: Yeah. Because I think so oftentimes we want one answer to a question and you don't get that. You have to listen to everybody involved and oftentimes they have conflicting opinions and conflicting suggestions for you, and then you're left trying to figure out what the right answer is for your family and for your. Your kids.
[00:41:57] Speaker A: Yeah. And that's where becoming an expert is really as helpful as it is, because you hit the nail on the head. Like, you talk to different GIs. Like for instance, Winston, we didn't talk about it, but he's got what's called a gastric inlet patch, which means he's got stomach tissue in his esophagus. You talk to different GIs, you'll get very differing answers on that.
So we've got considerations kind of going in the back of our head for Winston with that and with some other things, but to do best by him. And there is no right answer. I wish there were a right answer for that and for so many other things. But you need to inform yourself. Absolutely. As best as possible. Get all those opinions, both what align with your belief and those that might make you a little bit more uncomfortable and just apply them to your situation.
[00:42:56] Speaker B: Yeah, that makes sense.
Well, David, thank you. As we kind of wind down a little bit, I know that we. I mean, we have the question that we ask every guest, but even before we get to that, what has been your experience on the consortium and what we're trying to do? Because we do talk a lot about that on this podcast and trying to inform everybody about really changing the research for patient and family centered care and research in general.
Tell me a little bit, even just touch on your experience in finding either the consortium or how you felt throughout this project and where we're headed.
[00:43:35] Speaker A: Yeah, certainly. As far as finding it goes, I'm on Feeding Matters mailing list. So that was simple enough. We got the email invite or whatever, and I mean, that was a no brainer for me. I jumped on that opportunity at that point. As I mentioned, I'm a stay at home father to both my boys and prior to having Winston, I'd had a very successful career. And we didn't quite know what was going to happen.
We had Winston during the height of the pandemic which played a large part in my staying home. But all that to say, around the time that email came out, it was becoming very clear to me, I'm not going back to the workforce anytime soon. There's too much going on.
But I had that intellectual curiosity to do something besides what I was doing on a day to day basis. And to some extent I was starting to seek that out a little bit.
So when that email came through, that just seemed like a perfect fit to kind of put, I don't want to say passion because feeding is not my passion, but put something that I'm very.
[00:44:45] Speaker B: Put everything into it still. Like you could put all of that, all of the things you're feeling into, into the work of it.
[00:44:51] Speaker A: Yeah, exactly. Put those together.
So it's, it's been good. We've been at it for about a year now. I was fortunate enough to, to be one of the attendees at the in person meeting just a couple months ago, which, what a phenomenal experience to sit down, physically sit down at a table with some of the researchers and some of the individuals in the field that are making the decisions. Myself, as a parent, you wouldn't think would have a seat at that table, have a say at that table, but that's exactly what this consortium has given possibility to.
So how neat is that? Right. To be able to in some way give voice to all the families out there to influence what's happening, to try to move the field forward. Right. Because there's, there's not a ton of research in this field and that, that can be frustrating as, as a parent and as a family too, that like me, is very involved and is wanting those answers.
[00:46:01] Speaker C: Yeah.
[00:46:02] Speaker A: That research topic isn't necessarily going to help me and help my children, but the more of these topics that we tackle and we get answers to.
Again, like I said before, painting the picture with Griffin, they paint the picture for the field as a whole and be able to help all of us collectively do better. So it's been a great experience.
[00:46:27] Speaker B: Thank you. And that's definitely the point. We want our field families and our individuals with PFD and ARFID that are old enough to share their own experiences, to be able to sit at that table at the, at the table and not any sort of different power differential there, but really so that professionals can listen to the lived experience in the ways that they need to to further the field. And you're right, this is an emerging field. There's still so much that needs to happen with that. Do you want to ask our Question.
[00:46:57] Speaker C: Sure thing. So David, what do you see as some of the main barriers to research being patient and family centered in the feeding world and what do you think we can do about it?
[00:47:11] Speaker A: I was so not looking forward to this question, but of course, I'm so sorry.
[00:47:17] Speaker C: But can you tell it's like such a big question.
[00:47:20] Speaker A: I've listened to them, so I knew it was coming. And as I thought about why I wasn't looking forward to the question, that really became the answer to question for me and that is the breadth of what PFD and ARFID really encompass. There is limited research in the field, particularly of a comparative effectiveness nature.
And to some extent I think that could have to do with what a catch all PFD is.
We have similarities across the board, but every PFD story, every orphid story is a little or a lot different to the last. I mean you take even my two boys, very different stories and their medical charts and their developmental charts are otherwise have a lot of similarities. And the fact that they both have feeding challenges is a pretty big similarity. But there's.
Their actual relationship with food is very, very different. And I have theory on that. But in any case, so when you ask about including that family voice, that family voice is going to be very different based on their case and based on their goals.
[00:48:34] Speaker B: So true.
[00:48:36] Speaker A: So you throw in other comorbidities, you throw in other medical issues, cultural issues, socioeconomic factors, all these things.
How do you capture that family voice and research when the condition that affects all these biases and affects the desires of the family is as different than is as widespread as it is?
That's the challenge and that's why I was struggling with the question.
So to answer it, I think you have to do one of two things. You either focus on the similarities, which pretty much throws comparative effectiveness out the research out the window, which for me, like I want comparative effectiveness. That's I think what we need.
Or you drill down to very niche topics and focus on those, which is a win. But that's going to help a very small subset of the population.
[00:49:34] Speaker B: It's a great answer because it's a matter of we've done some classification, but is there more classification work to then get to our CER answer And how do you group together in a way that can still support maybe some of the similarities while also honoring those classification differences?
Definitely a lot of work to do for sure.
For us it's always so intermixed and involved and dynamic as a system itself. And that's I think, I think the benefit of PFD and even our Fed has diagnosis, but also the challenge of it too. And you're, you're honing in on what the challenge is in that regard.
[00:50:23] Speaker C: The good thing about comparative effectiveness research is that it does take things more at a real world level than the controlled.
[00:50:33] Speaker B: Great point.
[00:50:34] Speaker C: Sort of lab look at things.
[00:50:36] Speaker B: Yeah, yeah.
[00:50:36] Speaker C: Which is why it's more of a real world context.
[00:50:43] Speaker A: Which again, I think is a lot of what many of us need, what we want.
Right.
[00:50:50] Speaker B: Yeah. You want to be able to apply as quickly as we can because we know that there's still so much to go.
[00:50:56] Speaker A: Right. Right.
[00:50:58] Speaker B: Well, David, thank you so, so much for being here, for sharing your story, for all of your contribution on the consortium and where that project is going and how you all are going to impact the field.
We just truly appreciate you. And so thanks for spending this time with us to share your story. And to anyone out there that's listening, if you do need support or you do need to learn more information, please don't hesitate to reach out to Feeding Matters. Thank you.
[00:51:23] Speaker A: Definitely. Thank you so much to both of you. I really appreciate the opportunity.
[00:51:26] Speaker C: Thank you.
[00:51:28] Speaker B: Feeding Matters Infant and Child Feeding Questionnaire was developed as an evidence based tool to promote early identification of feeding disorders.
Developed by internationally recognized feeding experts, this online questionnaire, available in both English and Spanish, can help you better understand your child's feeding differences and needs. Take it online for free
[email protected] that's questionnaire Feeding Matters. Org or type ICFQ in your search bar.
