My 7 year old was just diagnosed with Crohn's - can you help answer a few questions?

Hi Wendy,

Welcome to HW. You'll find this forum is a tremendous resource, with a lot of support and experience. I'll try to offer you some advice and attempt to answer some of your questions.

As with most parents, I'm sure when you heard the words "Crohn's Disease" you were pretty shocked and scared. You also likely went straight to the Internet to get some answers, which can get a whole lot scarier.

If your Son does in fact have Crohn's, then no it's not good news, but treatment options have taken huge strides over the last 5-10 years. A lot of the negatives that you might be reading about via the internet, will be from a long time ago, when treatment was very primitive

To answer your first question, it sounds to me like your Son could certainly have something other than Crohn's. Biopsies are the most difinitive in diagnosing for Crohn's. Not trying to give you false hope, if he is presenting with ulcers, than something is going on. There are many other digestive disorders. Celiac would be the first to come to mind, and he should be tested for gluten intolerance.

Elevated Calprotectin will indicate inflammation. Did they give you any other test results? Bloodwork? CRP and sedimentation rate?

As for diet, I would recommend you have him follow a low residue diet to help calm his symptoms down. Unfortunately, the Doctors are right in that diet will not be a treatment option for IBD. You'll read a lot of anecdotal evidence regarding dietary approaches like SCD, but I'm sure most of the the feedback you'll get on diet as a means, will be negative. Just my opinion.

Recommending a biologic like Remicade or Humira isn't abnormal, but before you consider either, I would press your GI for reasons on why the biopsies came back negative. If they have a definitive diagnosis, then going with a biologic, even at a young age isn't out of line. They often refer to this as a "top down" approach. Meaning, if they use minimally effective meds, the disease can progress and do considerable damage. Many feel it's best to use stronger meds and keep the disease in check and avoid other complications.

When biologics first came on the scene, there was a tremendous amount of fear, but they have proven to be very effective, and while still a risk, and I wouldn't be so bold to call them totally safe, I would say that most have tolerated them well. My Daughter was on Remicade for over 10 years, and it was very effective.

Good luck, I'm sure others will offer you some advice here. Keep posting you questions and updates.

Thank you guys so much!!! Yes I’m really scared for him. He hasn’t been growing like he should so his pediatrician tested his CAlprotectin and it was very high. We did a colonscopy and endoscopy last year with no diagnosis- everything was normal. We have had him on a gluten free diet for 6 months and it helped a little. So this year we added the pillcam and it shows ulcers throughout the entirety of his small intestines which seems especially scary because you can’t even do a bowel resection if it’s everywhere. I myself have Crohn’s that has been in remission for 30 years but when I was very sick with it the medications were terrible. The surgery saved me.

My heart is breaking for him and I just want to do what is best. The biologics sound scary for his age but so do the effects of the disease.

Thank goodness I have found this forum and you guys- thank you both for sharing your wisdom.

Incidentally I suffer from severe psoriasis too and just started tremfya which has not been helping- I see from your title that there’s a forum for that too! Will have to check it out! Thank you both for your thoughtful replies.

One last questions- do you think it might make sense to try SCD diet and do another pillcam in a few months to see if it’s helping? I do want to try and get him growing again. He’s been tiny and had pain and diarrhea for the past two years and the kids at school tease him.

Hi Wendy,
Sorry to hear of your son's issues. Some questions:
How old is he? (Never mind, I just saw in the title that he's seven.)
For the capsule endoscopy, were any of the ulcers seen to be actively bleeding?
Is he having any obvious symptoms, like diarrhea, nausea, or even things like night sweats or low grade fevers?

I'd say that this is *probably* Crohn's, especially given that you have it as well, but a biopsy confirmation would be best.

If any of the ulcers were in the terminal ileum or in the duodenum, they could do a special scope callled push enteroscopy to reach a few inches into the small bowel and take biopsies.

I agree that a blood test for celiac is a good idea. It's a simple blood test, and if it's negative, you can rule that out with good confidence.

Also, does he take any other medications, even every once in a while? In unusual cases, some prescription and even non-prescription medications can cause small bowel ulcers.

As for Remicade vs Humira, they're both in the same class of meds and work the same. But Remi is an infusion vs Humira being a self-injection. There are now "biosimilars" available, which are kind of like generic versions of these two meds. They're cheaper - but still expensive. Your insurance will have a large say in which one gets selected. The advantage of Remicade is that studies show it's a little more effective (statistically speaking) than Humira, but the downside is that he has to spend time at an infusion center every 8 weeks.

There are lots of case reports of Crohn's in pre-teens and teens in which the biggest "symptom" is lack of growth. This usually corrects quite well when proper medications are introduced.

As for diet, I would not rely on it alone, but instead try diets in conjunction with medications, at least to get him through his growth phase. If he does really well and grows normally for a few years, then you could consider stopping the meds later. But he only has one chance in his life to go through a normal growth phase. Miss that, and he'll be small in stature from then on.

Wendy, a lot of the foods on the SCD diet my gi says to avoid while in a flare, nuts, raw vegetable, dried beans & fruits with skins on as an example. These are foods that can irritate an inflamed bowel. I cook all of my vegetables until they are really soft, no raw vegetables. The fruit that I eat, I peel. I've done this so many years that it is second nature to me. When reading experiences online about the SCD diet, these are unknown people that no one really knows a thing about their actual disease activity or anything else for that matter.

Beave brought up some some good ideas, I would certainly discuss the test he mentioned. Your son needs to eat as healthy as possible, 2 years into this & he is not growing & underweight is concerning. Add diarrhea to the mix he's losing a lot of nutrients. I would be looking for at medication in an effort to get things under control. Someone mentioned prednisone, that would be a last resort for me with a child. We have some close friends that their young son had severe UC, prednisone affected his growing, a biologic turned his young life around.

Treatment has definitely changed in the past 30 years for treatment of crohns. Try not to let your experience cloud your thinking.

I wanted to truly thank everyone for their insight and guidance. Based on your opinions i'm going to look at a number of options- and look into starting biologics. The doctor has recommended either Remicade or Humira. If we do do one of those, I would probably lean towards Remicade for now, since at this young age the interruptions due to infusions won't be as big of a deal as it would be when he gets older. The thing that worries me is that he is going to have to be on this medication for many many years according to his doctor.

I'm going to try cleaning up his diet too- he seems to have a sensitivity to both gluten and sugar for example with his diarrhea so we minimize those already. We have tested him for Celiac twice and both times he was negative. However he does get diarrhea when he eats gluten, so we have him on a gluten free diet. The SCD diet seems very restrictive also and i dont want him to lose any more weight, but i'm also really impressed with the results that Seattle Childrens hospital is having with both SCD and also i read about fecal transplants- does anyone know about them?

I will also look into some of the medications such as azulfidine and Librax.
Thank you all for the support and guidance! So glad I found this forum.

FMT never really got off the ground here in the states, some patients ended up with severe infections & a couple of individuals died. Drs & hospitals look at the potential liability issues. However, for people that have antibiotic resistant chronic c-diff infections there has been success. Is Seattle Childrens running a trial? In trials a person may get a placebo or the real thing, you don't know what you are getting in trials.

You need to be honest with his dr, discuss your fears about medications. While no one ever wants their child to be dependent on any medication, try to look at it this way, 30 years ago there wasn't the options available then that we have now. I know of two young boys that are on it, they went from being extremely unhealthy kids to healthy boys. No more missing school, they are of normal weight & play sports. Their parents were terrified at first, but now they are thankful to have healthy boys. Yes, the SCD diet is very strict & as I mentioned earlier, a lot of the food on there can be bad on intestines that has ulcers.

Go to Drugs.com & look up the two medications that another member mentioned. While Librax is a very old drug, I'm not sure if it can be given to a child. If he has a lot of cramping, the dr should be able to prescribe an antispasmodic for him.

Keep us posted.

Thank you for all the hope!

Thank you!!