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How our son’s Crohn’s was diagnosed

I think his case is a little odd so I hope it helps someone to tell about it. It‘s not a perfect account, sorta paraphrased I guess.

Our 8yr old son is autistic and has sensory issues. He doesn’t eat well, is afraid of poo, doesn’t like to be around people who are eating and won’t look at his own poo.

He’s had the flu several times and a couple of URI’s since he was 2.

Late December (2020) he caught something like the flu but no doctors here would even test him for it, only covid which was negative on 3 tests. The next week In January of 2021 he woke up very dizzy. We figured he had an ear issue from the earlier cold,flu,uri and the doctor (urgent care) we saw gave him an antibiotic.

He took the antibiotic and felt better pretty fast but a week or two after finishing the antibiotic he developed diarrhea which had mucus and smelled awful. His pediatrician tested his stool for some things (not sure what) and figured it was from the antibiotic. It took a bit to get over it but it cleared up and his stools returned to normal.

In August 2021 he got sick again and again his doc would only test for covid which again was negative. During this illness he would wake up coughing like he was about to throw up but would only cough up some stuff, not vomit. We stayed in contact with his pediatrician who quite simply was about as useful as a broken pencil. When they finally saw him he seemed to be doing some better but he had lost 10lbs and was pale. He decided to do a cbc and give him an antibiotic for what he thought was now a sinus infection and prednisone. The cbc was a failure (needle pulled out) so we left. The antibiotics seemed to work but we held off on the prednisone.

A few days later he was fever free and eating the few foods he would eat again. He went back to school and came home that day with a fever again and threw up. This was maybe the second week of Sept 2021. He ran a fever every evening/night and stopped eating again. A week later his pediatrician agreed to see him again but did nothing.

A day later his fever reached 103.4 and his pediatrician ordered a cbc and sed rate. He said these showed infection and ordered a bother antibiotic. This did not seem to be working great. His temp didn’t fever (100.4) but it did not return to normal and though we called several times to speak with him he did nothing more. It did however turn his beautiful teeth yellow.

Once the antibiotic was finished his high fever returned and after more blood work he sent us to an immunologist. When we met the Immunologists she had been given blank blood work tests by his doctor and since she could only go on what we had to tell her, she also thought his issue was something infectious and again ordered an antibiotic but a stronger one.

He was unable to stomach it and after talking to two pharmacists we realized the immunologist had given him almost an adult dose. I called her and she cut the dose to half but he couldn’t stomach that either so she suggested a 4th. That same evening he began complaining of pain when swallowing.

The next morning we went to Wake Med Childrens ER. They were not very welcoming because we were seeing an immunologist already but ended up admitting him for observation. The supervising physician was extremely unwelcoming and no effort was made to find a problem, they just watched to see if he would fever which oddly enough he did not.

They decided he had multiple viruses and some inflammation. At this time he was still down 10lbs, his lips were pale, his stomach was larger than normal, he was slightly anemic, he had strawberry tongue, he was weaker than normal, and would’t eat much at all. He was discharged.

We called his pediatrician and asked to see an infectious disease doc but since Wake didn’t do anything he didn’t see the point but he finally agreed though it took two weeks for him to do it and our son was running fevers again.

We met the Infectious disease doc and she did not take us serious either because of Wake and told us to come back in December. She did some blood work but didn’t seemed concerned. We called a few times and did more blood work with her which mirrored previous blood work showing elevated esr,crp, etc.

Unsure what else to do, I called my insurance and spoke to a nurse who put me in contact with a pediatric hospitalist who looked over his blood work. At this time we were scheduled to have an esr,crp,cbc, and some others tests done with the infectious disease doc because his temp was back in the 103’s.

We had the blood work done and forwarded the results to the hospitalist who looked at them and told me to take him to UNC childrens right now. I’ll note here that we didn’t hear from the infectious doc for a few weeks after this test.

We went to UNC children’s on 11/04/21 and they did a lot of tests. One of which was an ultrasound of his liver which revealed his inflamed bowels.

He was at UNC until 11/11/21. He was given tons of fluids, iron, steroids, acid blockers, etc. His hemoglobin got to 7.1 but he didn’t have a transfusion. His crp was as high as 125, his albumin was low, etc etc etc. They started him on Avsola after his colonoscopy and endoscopy.

He’s put all his weight back on, got his color back, his blood work has been normal for a few months now and he has only had one episode since then where his temp got up and he made the coughing sounds like he was gonna throw up.

We have a new pediatrician and since my wife lost her job during this time as she was home with him from August 26th to Nov 11th minus a couple of days he went to school, she is homeschooling him now. Well, not now, it’s summer break! :)

He never had bloody stools, and only had diarrhea the one spell that January. He never complained of pain (even the pain from swallowing we figured out from his body motions) and all the doctors we saw until UNC were cracks. The infectious disease doc called to tell me the blood work (the results that sent us to UNC) were nothing to worry about, the week after we got home from UNC.

Looking back we should have fought his doctors harder or taken him to UNC a lot earlier.

So, if your child runs fevers at night and shows sight of inflammation like elevated platelets, sed rate, crp, etc. ask about testing for inflammatory diseases.

my little penguin

Staff member
Glad you fought hard and got answers
Unfortunately very early onset ibd is extremely rare so not on the majority of pediatric specialists radar
Veo ibd is kids under the age of 8 when dx with crohns or UC
Stanford and childrens hospital of Philadelphia are two of the places in the US with veo ibd clinics where they are studying genetics abd how these kids do with different meds

really good he is on remicade and doing well
And your at a good hospital!!!!

We have all been there
It does get better
Your son is so fortunate to have you advocating. I am glad you got answers and I wish you didn't have to go through all that just to find out what was wrong. Your wife is amazing to homeschool. I tutor my son (who is on the spectrum), but I could not homeschool him. I hope you have smoother sailing from now on.