My husband and I kept going back and forth about whether my daughter Jessica really has IBD or not. I simply took what our functional medicine doctor said at face value. Jessica’s lab results showed high lactoferrin markers in her stool. Even though her gastroenterologist and pediatrician said they don’t see a toddler who looks like she has IBD. Of course they would say that since Jess does not have blood in her stool, is at a good weight for her height and age, does not have abdominal pain or BM issues. She basically doesn’t have any of the typical symptoms of IBD except that she’s been sick a lot since she was born and has frequent fevers, but those fevers seem to be connected to a specific issue.
Fecal lactoferrin “seems to be a useful parameter for diagnosis and monitoring of IBD in children.” Fecal Lactoferrin, a marker of intestinal inflammation in children with inflammatory bowel disease. https://www.ncbi.nlm.nih.gov/pubmed/26339799. This study goes on to say that lactoferrin is found in human breast milk and Jessica is still breastfeeding at two years old. “Fecal concentrations of this protein should be interpreted carefully in breastfed infants since, as mentioned above, this protein can be also synthesized in the mammary gland.”
This is the part that has concerned since the beginning. I had a feeling that whatever was going on with Jessica that things could turn on a dime without notice and since I knew and still know very little about this disease I should be on the safe side and breastfeed her longer. I also thought anything involving the bowel would affect or concern nutrition.
One night Doug my husband looked up VEO-IBD which means very early onset IBD. This is very different from regular IBD in a few ways. The first thing to know is that doctors and researchers don’t know a lot about IBD in general. One of the sweet doctors in our pediatric office said this is one of those diseases that doctors don’t really know what to do about. It’s complicated.
One of the things they research says is that IBD presenting very young behaves very differently from the disease that presents in adolescence and adulthood. Doctors believe that genetic susceptibility plays more of a role in young children and environment plays more of a role for adolesents and adults. VEO-IBD occurs in children less than 6 years of age. Jessica was diagnosed at 18 months.
This discussion which looks like a research paper called Very-Early-Onset Inflammatory bowel disease says, “They also have an underlying immunodeficiency, which can impact therapy.” They also say, “Another difference is that IBD in very young children can be resistant to many of the standard medications for IBD…even children with VEOIBD are often resistant to standard medical therapy and surgical therapy.”
When I think about what happens to Jessica when she gets sick it greatly concerns me. Just like with any toddler she doesn’t want to eat most especially because of fever. She has had issues with food from the beginning being a bit of a colicky baby and vomiting up a LOT. She was only 18 lbs. at one year old. We were concerned. Then on top of everything else she takes Tylenol for fever when sick which clogs the liver contributing to candida (see blog Does Candida contribute to IBD?).
After reading the research study entitled The Diagnostic Approach to Monogenic Very Early Onset Inflammatory Bowel Disease, it actually shed light on what I was feeling all along. Listen to what a very small part says, “Patients with a diverse spectrum of rare genetic disorders can present with inflammatory bowel disease (monogenic IBD)…several of these monogenic conditions do not respond to conventional therapy and are associated with high morbidity and mortality. Due to the broad spectrum of these extremely rare diseases, a correct diagnosis is frequently a challenge and often delayed. In many cases, these diseases cannot be categorized based on standard histologic and immunologic features of IBD. Genetic analysis is required to identify the cause of the disorder.” https://www.ncbi.nlm.nih.gov/pubmed/25058236
What’s interesting to me is that our pediatric allergy/immunology doctor gave us referrals to a ton of specialists including a genetic doctor, an infectious disease doctor, and we ended up going to the gastroenterology doctor in his practice too. We have our appointment in several months and I am sure we will find out more about what might be going on with Jessica. There are multiple specialists suggested for children with IBD to see, we may have only scratched the surface as of yet.