Diagnosing 10yr old

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JohnsMom

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Feb 2, 2017
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Hi, all! I'm the mom of a 10 yr. old boy who is currently going through the diagnostic process. I've been shocked that this is the route we're going given the few sxs he has.

About a year ago, John started throwing up a few times a day. By "throwing up", I really mean too much reflux to swallow. I mentioned it to his GP, who rx'd Zantac, which didn't work, followed by protonix, which seemed to make it worse. At this point, he's throwing up 5-8x a day.

Fast forward to an incident with my dad, who was diagnosed with Barrett's Esophagus, and I started to worry more about this reflux problem. I was able to get him right in with our gastroenterologist, who rx'd prevacid 2x daily and scheduled a barium swallow. The radiologist immediately stated that John's stomach was severely inflamed and irritated. He asked me about a family history of Crohn's, which we do have on his father's side. His report indicated "probable IBD", but there's an absence of ulcers in the stomach according to this study.

The gastro has scheduled an endoscopy for Monday, but I guess my question is, aside from throwing up around 10x a day, that we now know is definitely not reflux and some lower stomach pain after eating, he doesn't have any symptoms. We've done blood work and an h. pylori test, neither of which I have results for. He's on the small side weight-wise, but he maintains his weight ok. The gastro seems sure that it's Crohn's. Can any of you tell me if this sounds right?
 
Sorry you have to go through this but glad you found us
Crohns can silently do lots of damage on the inside
Ds used to vomit every two weeks at dx
Some kids have lots of symptoms and little damage
Others have minor outside symptoms (poor growth or weight compared to peers )
But have major damage inside


Good luck with the scope
 
Minor outward symptoms here. My son was diagnosed at 10 symptoms at the time were lack of appetite for about a year prior and he would have a stomach nearly every morning but by the time school started he was fine.
He stopped growing at about 10 years old so even though the medicine we had him on at the time seemed to be working as all his labs were in the normal range. He was a wreck throughout his small intestines. I wish he had more outward symptoms at times that way we know when things start to spiral for us but we have learned what is normal for him and what is not even though he will still be in normal ranges on labs.
Good luck with scopes.
 
My son's only symptom was vomiting. Initially we suspected Celiac and ran the blood work for that which came out positive (and something you might want to test for as well). His GI then did an endoscopy to confirm the Celiac and said as long as we're putting him under, let's do a colonoscopy as well. A week later he was diagnosed with both Celiac and Crohn's. We were totally not expecting the Crohn's.

A couple of years later (with no treatment because I didn't know any better) the vomiting started. First once in awhile and then over time it was several times a day. We kept thinking it was gluten, but eventually started to question Crohn's. His quality of life was horrible. An MRE showed a stricture in his small intestine. He would eat and, essentially, the food would get jammed up at the stricture and then come back up through vomiting. It had no where else to go. Lack of growth and vomiting. That was it for symptoms.

So, to answer your question, yes, it does sound possible that Crohn's might be the issue. Please keep us posted on how things go. Good luck!
 
Thank you for the responses. I've left a message for our dr. I'm curious as to why we're only doing the endoscopy and not colonoscopy at the same time. Has anyone had experience with meds making sxs worse?
 
You can't dx Crohns by just an UPPER ENDOSCOPY
Some docs interchange terms and mean an UPPER AND LOWER ENDOSCOPY
Definitely ask
Ds always has had both upper and lower together
No issues the past 6 times
 
I would definitely check -- sometimes doctors say endoscopy and mean both upper endoscopy and colonoscopy. It would make sense to do them together so he doesn't have to be sedated twice.

My daughter had only belly pain and constipation when she was diagnosed. It was quite a shock - I just couldn't believe it was IBD. But I've come to learn that there is no "typical" version of IBD, especially in kids. Some kids have bloody diarrhea, others have constipation. Some have every symptom in the book, others are completely asymptomatic. Some kids don't have gut symptoms at all but have delayed growth.

It really varies.

Good luck with the scopes. If he does have a colonoscopy, the prep is definitely the worst part. The actual procedure is just a nap!
 
There's definitely no scheduled colonoscopy. It's Monday, and we don't have the prep. I've had both procedures done (our family has messed up colons) so I've been able to help John prepare for it. I'm glad to know we aren't doing these tests for nothing. I just didn't understand how this could be Crohn's.
 
They aren't looking for Crohns IF they are only doing an egd (upper scope)
UPPER scopes look for gastritis ,stomach ulcers celiac duodentitus , EoE and other stuff
But not Crohns

You have to do a colonoscopy or lower scope to determine Crohns
You definitely need to call your kiddos gi asap

Once our GI clicked two boxes instead of just one
Ordered abdominal and pelvic MRE
I called to ask about why there was both
And the order was changed to just the abdominal MRE
No pelvic was needed
 
I talked to our GI, and he said he doesn't feel comfortable doing a colonoscopy now because John wouldn't handle it well. We'll schedule it after the endoscopy. The throwing up is increasing in volume now.
 
Really???
They do them emergent on admitted patients a lot
Ds has had that done more than a few times
If the concern is dehydration from vomiting etc...
They have them hooked up to an iv for clean out


Just realize that the upper scope can not tell you Anything about the possibility of Crohns
 
I've had both procedures during a visit before. I think I need to speak with our GI himself. I haven't met with him since our initial visit when he scheduled the barium swallow. His nurse called me with the concern about Crohn's (after the radiologist) and is who I spoke to regarding the colonoscopy. I'll ask questions after his endoscopy tomorrow. Does anyone have any suggestions for things to ask or things you wish you'd known earlier?
 
I would just ask about doing a colonoscopy. It sounds like it's too late to do with the endoscopy but you need it done to figure out if he has Crohn's. You would also need some kind of small bowel imaging down - usually an MRE or a pillcam. I would also ask about that.
 
Thanks for checking back. Endoscopy was perfect. No inflammation or irritation as seen on the barium xray. His genetic testing came back with no Celiac or Crohn's. The GI dx cyclic vomiting syndrome. I don't feel like it fits, but John threw up 50 times today. That's no exaggeration. I took him to the ER for fluids and meds to stop the throwing up. If you can imagine, he throws up an amount equal to a Tylenol dosing cup but did that 50x. It feels like a real, full vomit but doesn't produce more than a couple tablespoons. It's pure misery. No colonoscopy or plans to do one.
 
Your poor son!! That sounds awful!

I don't know much about cyclic vomiting syndrome, but are there meds that his GI is going to put him on?

Has he had a gastric emptying test by any chance? Some kids with Gastroparesis also throw up a lot.
 
Ds was dx with cyclic vomiting syndrome
And later abdominal migraines prior to Crohns dx
Because they never looked or scoped the lower end
He had clean upper scopes

Can you get into a second opinion GI quickly ?
Leaving him like that....grrr.....even if he has cyclic vomiting
They treat it to stop it
Not saying it's Crohns at all but ...
They need to rule out a lot for it to be cvs
 
That does sound miserable--I'm so sorry that your son is going through this. I hope that he gets some relief soon.
 
We saw our GI today. He dx rumination but ordered a gastric emptying test. He's been sick 12x today already, and it's not even noon. Referring us back to his pediatrician.
 
I know of a kiddo with rumination who was able to work with a psychologist to learn how to eat again. He also worked with a GI though and needed an NJ tube (a feeding tube that goes past the stomach, into the small bowel) for some time.

That said, other options should be ruled out - definitely do the gastric emptying test. I would also think about a second opinion. The biggest pediatric GI centers are Boston Children's, Children's Hospital of Philadelphia and Cincinnati Children's.
 
Agree with the others on a second opinion. Vomiting like that is no fun for a kid, not to mention how it irritates the esophagus and the damage that can be done to his teeth from the acids. Don't give up, momma!
 
That is SO awful, I'm sorry. Is he nauseous too? Could there be a problem with his vision or inner ear? Food allergy? Maybe migraine? Best of luck.
 
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