When you know something is wrong...

When I look at pictures of our son at the beach  last summer it is startling.  How could I look at those protruding ribs and thin limbs and not realize our son had Crohn's Disease?  Unfortunately, at the time I didn't even know what Crohn's Disease was.   Although I was always vaguely worried that Ben didn't eat enough or get enough sun, when I saw him without his shirt at the beach I was taken aback.   But somehow, I managed to talk myself out of my concerns, remembering old photos of his Dad -- who was also very thin as a boy but filled out as a teenager.  The paleness was easily explained in my mind too.  Ben didn't  play outside much -- like many boys his age he mostly preferred computer games.   

In addition to not knowing about Crohn's Disease, what we also didn't yet know that Ben was having severe diarrhea.  He was shy about telling us and didn't clue us in until the start of the school year.  We figured he was nervous about starting school and chalked up his symptoms to irritable bowel syndrome (IBS), an anxiety-driven condition that is pretty common in our family.  We tried not to pressure him to eat too much and let him pick many of our menus but when dinner after dinner was merely picked at, mealtimes became tense.  We wondered if he was having some trouble at school he wasn't telling us about or whether he might have an anxiety disorder.  We knew SOMETHING was wrong, but we didn't know what.  

At the same time, our daughter Isabelle was also complaining of stomach pains almost every morning.  She was admittedly excited and nervous about the start of school, so I attributed the complaints to nerves and didn't give it much thought at all.  Occasionally I would give her a TUMS, even if I didn't believe she had a "real" stomachache  I figured they were a good source of calcium.  She also intermittently complained about sores in her mouth.  In my experience, too much sugar, nuts, or citrus will give me mouth sores, so I assumed it was the same for her and tried to cut back on the sugary drinks she loved so much (e.g. chocolate milk at lunch, fruit juice box for snacks).  When the sores got particularly bad so that it hurt to eat, I took Isabelle to a walk-in clinic where the nurse practitioner diagnosed "hoof and mouth disease."  

If I knew then what I know now, its obvious none of this was normal and both kids were in early stages of Crohn's Disease.  They say hindsight is 20/20, so with my 20/20 hindsight I'll share the symptoms that our kids had that we ultimately learned are signs of Crohn's Disease:

• Frequent diarrhea and/or constipation
• Rectal bleeding
• Abdominal cramps and pain
• Loss of appetite
• Weight loss
• Weakness in the limbs and joints
• Fatigue
• Anemia
• Mouth sores/ulcerations in the digestive tract
• Skin rashes

Although every person is different, if any of these symptoms persist in your child, ask your pediatrician about testing for IBD.   When you know something is wrong, trust your instincts and ask specific questions about what could be causing your child's symptoms.  In most cases it will be a passing virus or food sensitivity but if its more, the sooner you get the right treatment the better.  

See also At 12, he had stopped growing. The reason was a surprise, Washington Post, Feb. 6, 2017.

To read more about the signs and symptoms of the disease we recommend the Crohn's and Colitis Foundation of America website, ccfa.org.