This is my first post, so I will try to keep it short, and any suggestions are appreciated
. I only hope our journey through doctors and misdiagnosis and medicines can help others like this site has helped me. This thread appears to be for kids that are currently undiagnosed and I thought I would share my son’s symptoms. It took almost a year to get diagnosed because of his strange symptoms that now make up the “puzzle”.
My son first showed major symptoms when he was 15. Prior to this he was very healthy. He had been sluggish for about a year, but we thought it was just teenage laziness. He never had diarrhea and had constipation problems since he was a baby. I think for this reason Crohn’s was overlooked…and the fact that he is super quiet and rarely complains about physical discomfort.
It started with chest pains, saying it hurt to eat. Doctor told us was heartburn and sent him home.
2 weeks later, my son was not eating much at all and the doctor then did ultrasound/labs and found his gall bladder was slightly swollen, he was anemic and his inflammation markers were high. Doctor was convinced it’s gall bladder related.
Before anything was done about the gall bladder (thankfully) he was in the hospital for 9 days because of weight loss and dehydration. While in hospital an endoscopy showed that he had severe erosive esophagitis. The doctors were thinking GERD or EOE was the cause.
They sent us home and treated us for GERD with large amounts of PPI’s (Nexium and Prilosec). Over the next 6 months, he kept taking the meds and he kept telling me they didn’t help and continued to get sicker. The anemia getting worse, more weight loss, less appetite, severe leg cramps and no energy at all. Finally, I got fed up with the doctor not listening or doing anything to help. We quit the PPI meds (slowly I should add) that were obviously making him worse and found a new GI doctor because I knew it wasn’t GERD and this Dr. just wouldn't listen.
We visited the new Dr. and I was so relieved when she seemed genuinely concerned and insisted on full lab testing for nutrition an endoscopy and colonoscopy. A week later after the scopes she was sure it was an IBD. After a CT scan, confirmed the moderate to severe Crohn’s. It only took a new Dr. that was willing to take a look at all the "puzzle" pieces to get a diagnosis. She had him feeling better within 2 weeks of the initial visit.
My Son is much better today.
His symptoms included erosive esophagitis, anemia, weight loss, leg cramps, fatigue and the inflammation in his blood tests. No diarrhea, no fever, no vomiting, and no blood in stool.
Don’t be afraid to get second opinions, push for testing if you think it’s necessary and ask questions. And do your best to keep a copy of all test, lab and scope results, this has helped me numerous times.
Mom of I (16) diagnosed at 15
Current Treatment:
Remicade started in June 2017
Vitamin D supplements
Iron Supplements
Past Treatments:
Imuran
Prednisone
Nexium
Prilosec
now remember we're not docs but parents who want to help our kiddos.
