To colonoscopy or not - more decisions for my kid

Having had numerous scopes myself, I would say sure you should get one for your kid since that's really the only way a GI doc can know.

But I can't imagine being that young and having to go through the prep and then being nervous about the procedure and all that.

If your kid is a fighter then I'd push for the scope. If they are rather timid about these things, maybe you can wait until they are a few years older, assuming the symptoms can be managed that long with meds only.

I just saw from a previous post from you that they did blood & stool tests. Was fecal calprotectin included in the stool tests?

Sorry should have clarified. Full blood work and stool testing was done including fecal calprotectin. No abnormalities. Child needs to sit and pass mucus every time they pee. Stools are never formed but not ultra liquid and occur with normal frequency. No pain, blood or urgency. This has been happening since January.

I am still leaning towards having the procedures done but am trying to work through the decision making process.

How about trying a diet modification to see if it is celiac disease? Or some other allergy like lactose.

Has it gotten any worse since it started?

I’d ask the GI if it is IBS or Celiac and you tried a short course of Prednisone would it improve your child’s symptoms? Or would it only improve UC? It might be aggressive but could give you a little more insight in which direction to go.

Is the pill camera an option for a child? As a child I would have thought that it was the greatest thing to swallow a pill and have it video my insides.

I’d probably wait and see if it gets any worse before I went further. My concern would be the kid having an accident in school and not making it to the bathroom. Kids can be so mean (so can adults).

Thanks for all the replies and personal experiences. I spoke with our pediatric GP today, who also suggested further testing, which helped my wife accept that we should go forward. I did some research as well, which showed a high level of safety for pediatric colonoscopies. Risk of perforation/infection etc are very low. GI stated pedi colonoscopies are safer than they are for adults.

A food intolerance is possible.

As to celiac, it should be tested for with blood tests before any diet modification is done.

A pillcam is best for finding small bowel inflammation and is typically only done when Crohn's is suspected but colonoscopy and endoscopy and perhaps MRI or CT scans have all been done and are inconclusive.

As to microscopic colitis, it usually occurs in elderly people (though not always), more likely in older women than older men, and usually presents with watery diarrhea.

It would be quite unusual for it to be IBD with normal blood work AND normal fecal calprotectin, but it's still possible.

Post Edited (beave) : 4/2/2019 3:30:33 PM (GMT-6)

I agree that a celiac blood test panel should be done before even thinking about going gluten. Too many people end up in diagnostic limboland when they go gluten free as all celiac tests (even biopsies of either skin or small intestine) require patients to be on a full gluten diet.

While I have celiac disease, my niece has Crohn’s. She had NONE of the traditional symptoms. Celiac disease was firmly ruled out, but a pill camera caught her severe damage which was out of reach of both scopes. It was her 4th PED GI who caught her Crohn’s. I was given the old “I Be Stumped” diagnosis years ago. Turns out it was celiac disease all along! I personally think doctors do not know everything yet about the GI tract. Do not settle for an IBS diagnosis until everything possible has been ruled out.

And when you do get a diagnosis, if things change in the future (new symptoms, etc), do not let doctors pigeon hole you into a single diagnosis. “Oh, it must
just be your UC flaring.....” I am on my second autoimmune GI disorder (autoimmune Gastritis, which is separate from celiac disease and developed years later).

Keep up the good job of advocating for your kid!

Let us know how it goes.

Hi

Just wanted share that my son had his first scope (upper and lower) when he was in first grade. It was nerve wracking for us, but it honestly didn't seem to faze him at all. Partly because he knew exactly what to expect and partly because he didn't know enough yet to anticipate what getting an IV really felt like! . I think I found a kid friendly video for him to watch too. Also he got the day off from school and was allowed lots of screen time when we got home so he was pretty cool about the whole. He;s 18 now and has had about six upper scopes since then and they have all gone with out any problems.
For us, we found out what was wrong with him (eosinophilic esophagitis) and were able to get him treated. Though to be honest, It did feel horrible to know he had probably been sick for months and we didn't push to get him to the specialist earlier.
Best of luck to your little one!! I hope the scope looks good!
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