Posted by ImproveCareNow™ on December 18, 2024
This is Tori's story about her son's Very Early Onset Inflammatory Bowel Disease (VEO-IBD) diagnosis at just two years old. It's a story of misdiagnoses, frustrating dismissals, and the eventual discovery of a chronic condition that affects a growing number of very young children. More importantly, it's a story of resilience, hope, and the power of community. Enjoy Tori's powerful #IgniteTalk as she recalls the challenges and triumphs of raising a child with VEO-IBD and discovers how this journey has transformed her family and inspired them to advocate for others.
Be inspired by Tori's #IgniteTalk 🔥
Good morning, as you heard, my name is Tori Levine and when my son Reuben was two - he was still a baby to us - a toddling, talkative, precocious, little guy who loved to sit on my lap and read all day…he could sit on a two-pack of paper towels and not even make a dent in them…and he discovered the fun of unrolling toilet paper while on the potty.
From the day he was born, in the end of June 2014, he had a lot of spit up issues. And I don’t mean the usual amount, I mean we had to buy a new couch level of spit up issues!
We found he had sensitivities to dairy and soy and we were sent to the allergist after he began eating solids and developed rashes with wheat. When nothing showed up on testing, we were told he had a gluten sensitivity and life with our little one went on as usual, but with many changes of clothing for everybody.
Then on a weekend in February of 2017, when he was 2, I saw blood in the toilet…and it wasn’t just a little – it was several clots. I immediately called the pediatrician's on-call line but was told it was okay because toddlers get constipated.
I immediately called the pediatrician's on-call line but was told it was okay because toddlers get constipated.
So, over the next several months we saw several different pediatricians and I was told we were seeing blood because of “toddler constipation or gluten issues,” even when I reiterated that he was having 2-3 loose stools a day. Reuben also began occasionally saying he “ate too much,” only after a few bites, but thankfully he didn’t seem in pain.
Then there were a few days over the course of the last weeks of April when all we could do was cuddle up on the couch as he curled his knees into his chest and cried saying “Mommy, ate too much.” These episodes never lasted more than a few hours… but I once again called the doctor, and this time asked for the first appointment available when his pediatrician was back from maternity leave. Thankfully, it was the following Monday.
The day before, we were attending a fundraiser concert where he was having a great time bopping along to the music while I held him on my hip but then he suddenly cried and while trying to pull his knees to his chest said “Mommy, ate too much, need to go potty.”
When I took him, only blood and mucous came out and now I could tell he was in pain. We debated going to the ER, but thankfully, after a little to drink and some snacks in the car, he was feeling better.
The next morning we met with his perfectly-named pediatrician, Dr. Love, AND she was actually concerned. After the in-house hemoglobin came back as low, we were sent for further lab work, and she directly contacted the on-call GI at Hershey and Reuben had an appointment the next week.
I, of course, (please don’t hate me), went to doctor-Google and found Reuben had all the symptoms of IBD. BUT everything said it was only diagnosed in teens and adults.
At Hershey, we met with Dr. Jhaveri, who didn’t brush off any of our concerns. He was direct with a list of possibilities and the last of which was the first time we ever heard the words “Very Early Onset Inflammatory Bowel Disease” or VEO-IBD. He said he wasn’t overly concerned and said, “In the 10 years I’ve been practicing, I’ve only had one child this young with IBD, and I referred them down to the Children’s Hospital of Philadelphia VEO-IBD Clinic because they specialize in it. Where I have seen 1 kid in 10 years, they see 10 a week.”
And, I thought to myself, “well, Reuben’s going to be your second referral.”
After an elevated calprotectin and negative Meckel’s Scan, Reuben was scheduled for scopes and on May 31, 2017.
After I rode on the gurney with him into the procedure room, my husband and I were walked to the waiting room and told someone would be out with us in about 45 minutes. An hour and a half later, someone took us to the family consult room, but didn’t tell us anything. I was panicked because I knew these were not the rooms you wanted to be in, and I just needed to know if my baby was okay!
I was panicked because I knew these were not the rooms you wanted to be in, and I just needed to know if my baby was okay!
Finally, the doctor who performed the scopes came in and gave us an IBD diagnosis. She explained that Reuben ended up needing to be intubated during the procedures AND since he was so small the first scope they used was too big and even when she switched to the smaller scope, Reuben had so much inflammation that his intestines were “sloughing off” and she had to really “push through to be able to see anything.”
We were handed a yellow booklet on Pediatric IBD, which was only pertinent to teenagers and told “steroids can help, but he’ll need surgery to remove some of his small intestine, or a colectomy within ten years.”
That evening, before I went to bed, I checked on Reuben, and he sounded like he was having an asthma attack - even though he had no history of asthma. I woke him and he just seemed like he was gasping for air. My husband called the hospital and the doctor who performed the procedure told us to get to the ER.
I include this part of the story because we later learned, only after many anxious calls with CHOP prior to his first scopes there, that this was all a result of the equipment used being too large for his little body.
He was able to be seen in the CHOP VEO-IBD Clinic within the month and I remember the absolute range of emotions my husband and I had while driving onto this big medical campus. We were (and still are) beyond grateful to Dr. Jhaveri, who was capable of treating Reuben, but recognized that we could drive 2.5 hours and see experts in a facility more equipped to handle kids like him. But while we felt grateful, we also felt Angry, Jealous, Sad, and even Guilty…because we knew families inside the hospital were facing far more dire circumstances.
Since our first meeting with Dr. Conrad, the VEO-Team, and all the nurses and Child Life in the GI Infusion Suite, we have felt nothing less than like Reuben is their only patient. It is so apparent that each child and family matters and isn’t a number. They aren’t just checking boxes in a standard form with outdated information about what the next steps should be. Individualized care is happening, which is so necessary for VEO kids and it’s one of the benefits of attending an ICN Center.
Individualized care is happening, which is so necessary for VEO kids and it’s one of the benefits of attending an ICN Center.
Having a child diagnosed with VEO-IBD affects the entire family… And when that child is your first, the younger sibling’s belly aches, diapers and eating habits are definitely watched through much more anxious eyes. For the longest time, I didn’t share a lot about the emotional side of Reuben’s diagnosis. I don’t ever want it to be perceived that I’m complaining, looking for pity, or putting my feelings on others. It can be uncomfortable when people respond with the well-intentioned comments like, “Oh, he’ll grow out of it.” And, as Reuben grew, it was important for me to know that he was okay with what I shared with the world. I’ve struggled with how to share our family’s story while also being sensitive to it really being HIS.
About 2 years ago, our one-year-old puppy got a hold of “Doggy,” the safety stuffy for Reuben through all the infusions and procedures. At that moment I realized Doggy was like our own safety blanket as parents, and now all of our emotions from the past five years were scattered about as fluff on our living room floor. That is when it all really, truly sunk in - the chronicity of a chronic illness and diagnosis at such a young age.
That is when it all really, truly sunk in - the chronicity of a chronic illness and diagnosis at such a young age.
Now, I share our story more to bring awareness to the emotional side that families are dealing with. I share to help the parent out there, who just like I was, is sitting on the edge of the bathtub, across from their toddler on the potty, feeling completely overwhelmed and ashamed for panicking about how many times he’d gone to the bathroom…how much or little he ate...if I asked the doctor too many questions…or if I was, again, going to get brushed off at urgent care only to end up in the ER that night.
When Reuben was diagnosed, the Crohn’s & Colitis Foundation had no information about VEO-IBD. To find others in similar situations and gain more understanding meant turning to online groups or forums, which have their own host of issues, or purchasing access to scholarly articles, which is not something everyone is able to do, or should do.
Being the ICN VEO Parent Partner for CHOP and working with Dr. Holbein to help facilitate virtual meetings specifically for VEO families has been more meaningful than I can put into words. Connecting with other parents, even over zoom, can provide crucial understanding, reassurance, AND alleviate some of the feelings of isolation and shame for not knowing how to handle it all. I wish I had met other parents whose toddlers had to receive monthly infusions so I could ask for tips or just commiserate earlier in our family’s IBD journey. Now that I have, I’m so grateful for this opportunity to be able to give back to help ensure that no other family feels the same isolation that we did.
I wish I had met other parents whose toddlers had to receive monthly infusions so I could ask for tips or just commiserate earlier in our family’s IBD journey. Now that I have, I’m so grateful for this opportunity to be able to give back to help ensure that no other family feels the same isolation that we did.
I’m fairly certain I can say that everyone in this room has had to deal with at least some insurance issues. Providers and ICN Centers should be commended for the compilation of studies and resources to assist with the tedious paperwork and fights with insurance companies which helps to ensure each child is getting their very own best course of treatment. Every child should have access to this type of care and that’s why I believe every facility should be part of ICN because I unfortunately still hear stories that point to the lack of broader recognition of VEO-IBD.
Stories like:
- The doctor said it’s not VEO because rounds of steroids are managing his chronic colitis
- AND stories from families who receive pathology reports that say, “this looks like IBD but it’s not possible in a child this young.”
Providers - I urge you to ask caregivers if they need anything - to share resources with them about family support and share The Gutsy Network with your VEO families.
Providers - I urge you to ask caregivers if they need anything - to share resources with them about family support and share The Gutsy Network with your VEO families.
I’ve spoken to parents who have had to fight to enable their VEO child to meet with a GI psychologist. So, I implore you to make this part of the care plan, even for kids under the age of six, because in this age group it’s important for the parents and caregivers to have the tools needed to help both their children and themselves.
Two years ago, I came to ICN wanting to write a VEO-centered resources support guide for parents. I’m thankful for the opportunity to have contributed to, and helped edit, the Caregiver Coping Guide, which, when available, I hope will be provided to each family no matter where they are on their IBD Journey.
I’ve wracked my brain to try to assemble some key takeaways for you to share with colleagues, but I’ve come away with more questions.
- Since VEO-IBD, is the fastest growing age group of IBD, what resources can be provided to pediatricians so symptoms like consistent bloody stools in a toddler, that should warrant a referral to a GI, are not being dismissed?
- Can the wide range of symptoms and presentations, and lack of chronicity in a large portion of very sick young kids accurately be assessed with the current tools available?
- Or what data is needed to develop more age and disease-appropriate tools to assist in VEO diagnosis and management?
- How can information be provided to caregivers, who often have a lot of questions after the visit, to help them understand that while medical interventions seem scary, earlier treatment is necessary for their child to have better outcomes.
Obviously, I don’t know the answers, but I’d love to hear your thoughts on how we can all work together to improve the care across the country and the world for these very young children.
Finally, I want to reiterate that ALL the work being done by ICN Centers doesn’t only help improve care, but the support and awareness it brings also allows kids (even young ones) to feel confident in talking about their IBD with friends, teachers, and others in their lives. Two years ago, Reuben started 3rd grade at a new school. He had just been diagnosed with Celiac Disease over the Summer, and his anxiety about infusions was only increasing. As a kind of distraction on our way to an infusion, I asked if he wanted to make a video of the process and he could share it with his teacher, since he wanted her to know why he had to leave school early.
We made the video together - and he wanted to share it, not only with his teacher, but ALSO his classmates. And he later asked if I could share it through the Gutsy Network to help others who might be feeling nervous about infusions. The video has over 82K views now, which has given Reuben an amazing sense of pride. So, in a way, ICN has helped create a little advocate who wants to bring awareness to VEO-IBD and help others in the same situation.
I’m beyond humbled and honored to have had this opportunity, and if you are involved in VEO-focused care, I would love to work with you and be a resource in any way possible.
Thank you for your time and for listening to our story.
And if you’d like to see or share Reuben’s video you can watch it here ⬇️
Thank you again, so very much!