This is the story of how my 7 year old son was diagnosed with VEO-IBD and more specifically, Crohn’s disease.
My Son’s Health Journey & Crohn’s Diagnosis
I’m sharing my son’s Crohn’s diagnosis story today for several reasons. First, I hope that it will help another parent navigating their own child’s health journey. So many of us are going through this motherhood journey day-by-day and figuring it all out on our own, and I know how helpful it is for me when I see someone going through what I’m going through. We all pave little paths for one another. Second, I also hope this comforts other VEO-IBD warrior parents out there. It’s a lot, and we’re not alone.
First, I’ll share how we ended up with Luca’s Crohn’s diagnosis, how we’re treating it, how he’s doing, and what the future looks like for him (and our family.)
What is IBD?
Before we get into Luca’s story, let’s chat briefly about what Crohn’s and “VEO-IBD” means. Essentially, IBD is an umbrella term and stands for Inflammatory Bowel Disease. At its basic definition, IBD is a condition in which there is chronic or recurring inflammation of the gastrointestinal (GI) tract. Your GI tract is the system of organs that food passes through as it’s digested and absorbed.
Within IBD there are several types that present slightly differently, affect different parts of the GI tract, and are treated differently. The two main IBD types that are most common are ulcerative colitis and Crohn’s disease.
IBD is treated with medications (everything from steroids to biologic medications infused via IV) and of course, diet (which I’ll get to.) While these diseases can go fully into remission, they cannot be “cured” and thus are known as lifelong autoimmune diseases. They also don’t know exactly what causes IBD, but they do claim that there is a genetic component (none of our families have any known history of IBD.)
VEO-IBD stands for “Very Early Onset IBD,” and is classified for those diagnosed with IBD ages 6 and younger. Even though Luca was officially diagnosed at 7, his symptoms and his journey started at 6 and thus, his disease is categorized as such.
Luca’s Crohn’s Diagnosis Journey
Luca’s diagnosis took a while, because he didn’t have the classic indicators or symptoms of IBD (such as failure to grow, persistent abdominal pain, diarrhea, constipation, poop urgency, etc.)
For anyone that knows Luca personally or for those of you who have been following along since he was born, Luca was always a very athletic, coordinated, and active kid. He rode a scooter by the time he was 18 months old, was running down a soccer field dribbling a ball at 23 months old, and rode his bike before age 3.
Then, last year, in late March of 2024, at 6 years old, he got COVID (this was the second time he had the virus.) He was asymptomatic the entire time, and I only knew he had it because I tested him after I had tested positive myself. Then, about 2-3 weeks later, he woke up on a Monday and couldn’t walk down the stairs (we lived in a 3-story brownstone at the time) due to pain in his knees. I was shocked, but I thought maybe he got an injury playing or during after school sports. With a pretty severe limp, we walked to school (it was about a 5 minute walk.) When I picked him up from school, he was still complaining about his knees. His teacher said he sat out during recess. That was not the Luca I knew, so I called the pediatrician immediately and they said to wait a couple of days to see if he got better and if not, I made an appointment for the end of the week.
All week, I had to push Luca in our stroller (which I was using to push my 2 year old twins to school at the time.) He didn’t get better, only seemingly worse. He couldn’t run and he was very frustrated. It was so sad to see him like that, because as I said, Luca was always the most tenacious- if not the fastest – on the field.
After the pediatrician examined him, they said everything appears normal and referred us to an orthopedic surgeon. The next week, we visited the surgeon, had x-rays done, and she ultimately said “his bones look fine, wait 2 weeks and if he doesn’t get better, get some bloodwork done.” Well, after 2 weeks, it wasn’t getting better, so we booked an appointment with a hematologist, got the bloodwork drawn, and waited for the results. Now, he was laying down after school and started to seem fatigued more easily.
Finding out Luca was anemic
By May, the results of the bloodwork showed us that his inflammation markers were very high and he was anemic, with a very low iron count. The hematologist told us to start an oral iron supplement and monitor his iron levels and to get repeat bloodwork in 4-6 weeks. In the meantime, the pediatrician recommended seeing a rheumatologist. The physical exam determined nothing and she ordered some bloodwork to test for some autoimmune issues (I guess to test for juvenile arthritis and rheumatoid arthritis.) All negative.
We moved to our first house in a new town in June and over the summer, Luca was at summer camp. We did some bloodwork and his iron levels were barely crawling up and his inflammation markers were still so high. Over the summer, he had intermittent knee pain and sometimes it would hurt in his hips or his ankles or his shins. It wasn’t ever as bad as it was that first time, but it was there. Also, once in July and once in August, he came home with dirty underwear because he had a poop accident (keep in mind he’s almost 7 at this point and had never had something like that happen since he was potty trained.)
Seeing the Gastroenterologist
Finally, his iron levels got to a near normal range by September, but it didn’t sit right with me. Why was he anemic? Where did the joint pain come from? Originally, my hematologist had recommended seeing a gastroenterologist “eventually” if the iron didn’t go up. Well, despite it going up after about 4 months of oral iron, I needed answers. Luca’s joint pain stopped, but I did notice that he was having really hard stools and he just didn’t look like himself – he was pale, had red rings around his eyes, he was skinnier than ever, and he was about to start school and turn 7 years old.
I booked the appointment with the gastro doctor and he said that Luca wasn’t presenting any symptoms of IBS or IBD and that he’s probably okay but if I’d like to get a stool test, he’s happy to do one. Of course, I said yes! And sure enough, after we sent the poop out (the things mothers do!) the results came back and showed microscopic blood in his stool (it’s the “fecal occult blood test.”) Then, the calprotectin test results came back which measure the amount of calprotectin in your stool and high levels are a sign of intestinal inflammation. Sure enough, they were elevated enough (at about 600, whereas normal for kids is <100.)
From there, the gastro doctor ordered an upper endoscopy and colonoscopy. Just before Thanksgiving, I took Luca myself to this appointment and waited for the doctor to see me as Luca woke up from the anesthesia. He sat in the room and I’ll never forget his face looking very serious and he explained that while his endoscopy looked perfect, his colonoscopy showed severe inflammation in the colon, particularly the terminal ileum (the part that connects the small intestine to the large intestine) and an intestinal stricture (which is basically the narrowing of the intestine which can lead to a blockage that will require hospitalization, surgery, etc.) Not good. He said he finds these results indicative of Crohn’s disease.
I just remember wanting him to stop talking so I could reach for my phone and Google “kids and Crohn’s disease,” because a) I don’t know a single adult with Crohn’s disease, let alone a child and b) I had no idea what Crohn’s disease was! This wasn’t part of the plan. I didn’t know what his life would look like, how it would impact his love for sports, or anything. It was overwhelming, I was in the doctor’s room alone, and after he left and I waited for Luca to wake up, I cried (very quietly) in the waiting room. I remember seeing Luca afterwards and I gave him the longest hug. I knew I had to be strong and that this would be a very, very long journey with many highs and lows.
Getting a diagnosis
The next steps were to wait for the biopsy results and get an MRI, because the doctor’s scope couldn’t get as far as they would’ve liked, because of his stricture (that narrowing of the intestine.) A few days later, the biopsy results were not “totally” indicative of Crohn’s, so he really recommended we get an MRI to confirm the diagnosis. And more bloodwork, more waiting for results.
The MRI was done and that’s when I scheduled a second opinion visit at Children’s Hospital of Philadelphia (CHOP.) With all of our MRI results, colonoscopy imagery and biopsy results, the doctors at CHOP also agreed with the Crohn’s diagnosis. However, there was one rare genetic disorder it could be and they wanted to rule that out. That’s when we had to wait MONTHS to get the blood test done (we tried FOUR times and the lab kept mishandling the blood sample.)
This past February, on President’s Day, Luca went to CHOP for this final blood test and a partial colonoscopy to look at something they found on the MRI (it ended up being nothing) and from this, we got our official Crohn’s diagnosis on Valentine’s Day 2025. Woof. It took 10 months to get the official diagnosis but once we did, I went into fight mode.
How we’re treating Luca’s Crohn’s Disease
To treat Crohn’s disease, there are three options: food, medicine, or food & medicine together. Ideally, I would love to treat Luca’s Crohn’s strictly through diet but it’s difficult to do with a 7 year old who’s constantly at birthday parties, play dates, school parties, and just…. living a normal childhood. I don’t want him to look back on his life and say he feels like he missed out, so for now, I’m picking what feels most feasible, most safe, and best for his stage of life: food and medicine.
Right now, we started him on a drug called Remicade (he’s taking the generic called Inflectra) which is Infliximab, used to treat autoimmune and inflammatory diseases. It’s administered via IV at the hospital once a month. The goal is to spread out the infusions/lessen the dosage of medicine if his inflammation gets under control (so he only has to go every 6 weeks or every 8 weeks.)
In terms of diet, a week before his first infusion, I started him on a gluten free and dairy free diet, just to experiment with popular triggers. Within days, his stools were softer and he was hungrier. Then, someone in a support group for kids with VEO-IBD recommended reading the book Breaking the Vicious Cycle: Diet for Crohn’s Disease, Ulcerative Colitis, Diverticulitis, Celiac Disease, Cystic Fibrosis and Chronic Diarrhea. Talk about a mind blower! Upon further research and talks with other parents of kids with Crohn’s, I decided to dive into the Specific Carbohydrate Diet (SCD), a diet that restricts complex carbohydrates, such as grains, starchy vegetables (like potatoes), and all processed foods. Essentially, it’s a whole foods diet that eliminates starchy vegetables and grains.
While it may seem that it’s restrictive, since being on this diet and his first two infusions, he has gained almost 3 pounds in 3 weeks! His stools are normal, he has no abdominal pain, he has his appetite back, and the redness around his eyes has faded away.
So for now, the plan is to stick to the SCD diet as closely as we can without driving everyone crazy. It’s actually pretty amazing, he’s eating a larger variety of foods than he’s ever eaten even though we’ve restricted so many foods. It’s been eye-opening to say the least. Tonight we’re having rutabaga fries with lamb chops and roasted string beans. It’s almost like his taste buds have changed (no more refined sugar) and now he’s able to taste how delicious real food tastes.
A sample daily menu for Luca:
- Breakfast: Scrambled eggs with homemade cashew bread toasted with butter and fruit
- Snack: Yogurt with fruit and grain-free granola
- Lunch: Cheddar grilled cheese (on homemade bread) with beet “chips” and gummies
- Snack: Homemade waffle with almond butter
- Dinner: Lamb chops with rutabaga fries and roasted string beans
- Dessert: Homemade chocolate chip cookie and grapes
I’ve had a lot of fun coming up with family-friendly meals for all of us, and Luca is feeling so much better.
How Luca is feeling
Speaking of, Luca is feeling great. Just the other day (about 2.5 weeks into eating this way and starting the biologic), Luca couldn’t button his pants in the morning! He’s putting on weight, his color in his face is back, and he seems much less irritable. For the past few months, I’d pick Luca up from school he would always seem unhappy or upset despite having any real “reason” for his mood. Well the reason was his gut!
Now, what I’ve learned the most about is the gut-brain axis and serotonin being started in your gut. Well, everything starts from our guts and if your gut is off, the gut-brain axis is off and our moods, our anxieties, our energies, our everything is thrown off. Here’s a wonderful explanation of the gut-brain axis, in case you’re interested in learning more.
As for his perspective on his Crohn’s diagnosis and this diet he’s on, he has his moments. He will say that it’s “unfair” that other kids and his siblings can eat whatever they want. In those moments, I simply say, “You’re right. It’s unfair that your body did this to you, but once you heal yourself, you can reintroduce some of these fun foods.” And if he’s not taking that bait, I’ll always say, “Okay, Luca, have the cupcake. It’s your body and it’s your choice, I am here to tell you what’s the good choice for your body, but you can do what you want.” And whenever I say that, he makes the good choices, because he knows how those foods make him feel now, and I think he just wants autonomy, which I get. While we’re only a few weeks into this diet, he is doing really well with it and hasn’t give me that much pushback.
Spring soccer starts soon, and I am so excited to see how he does, since he hasn’t played a heavy running sport since the fall (he played basketball over the winter, but at this age, they aren’t really sprinting up and down the court yet and it’s mostly clinic-style.) I’m hoping he doesn’t have joint pain and that he isn’t as winded because his body isn’t fighting inflammation any longer.
Moving Forward: What the Future Looks Like
For right now, we’re in the hospital every 4 weeks for infusions and at home, we’re sticking to the Specific Carbohydrate Diet. Coming up, I have appointments with a functional medicine doctor to look at Luca’s health more holistically and give him more tools in his toolbox. Also, I have an appointment coming up with a pediatric nutritionist to dive deeper into these diet changes and make sure she’s getting all the nutrients he needs. Luckily, now that he’s on a treatment path for his Crohn’s disease, he can finally start to actually absorb the nutrients from his foods instead of just losing them from malabsorption.
For larger procedures and questions, we’re still going to Children’s Hospital of Philadelphia, but for the day to day check ups and infusions, we’re staying local here in New Jersey.
In the future, I’d love to be fully off the biologic and just rely on diet. For a 7 year old, I think that’s a tough goal, but I’m going to take it day by day and teach Luca how to feed his body properly. I would love to reintroduce some foods once his gut is healed, so it’s a little easier on him socially.
I’m monitoring my other children closely, because research shows that Crohn’s disease has a genetic component and often affects multiple kids in the family (and we’ve got 4, so our chances are higher!)
Overall, I’m feeling positive but I know that this will not be a linear journey, and I know that there will be many ups and downs, especially when he’s older. I can control most of his food intake and lifestyle now because he’s only 7 years old, but once he’s older and “on his own” a bit more, I’m already feeling nervous. But, I’m a big day by day kind of person, so that’s where we are!
And of course, Crohn’s and family friendly recipes from yours truly coming soon.
Support Luca and Fundraise For IBD Research & Support
I hope this was encouraging and helpful for many of you navigating similar paths with your kids (or, yourselves!) I am learning more and more everyday and have found the Crohn’s & Colitis Foundation website to be so helpful. They even have this interactive GI tract guide that helped me understand the parts of our bodies more and to visually explain things to Luca.
If you’d like to help support Luca, we’re taking part in Take Steps, the Crohn’s & Colitis Foundation’s signature fundraising event, walking together to raise critical funds for research, education, support, and advocacy efforts for IBD.
We’ve started a fundraising team for Luca called the Luca Dawgs (our town’s mascot but also Luca desperately wants a dog, so everything is dog-themed lately, ha!) Even $1 is helpful in achieving his fundraising goal and anything is appreciated!
