Crohns in small intestine?

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After a second lot of scopes and finding a small amount of inflammation again that is not chronic the specialist is thinking our 7 year old daughter may have crohns higher up in the small intestine that can't be seen with scopes. He wants her to try Flagyl again (3rd course) and then if still no improvement an MR Enterography. Apparently medicare won't cover a pill cam which would be the best way to diagnose crohns in this area.
I am just wondering if anyone has a similar story or any information that may be helpful?
 
My daughter Crohn's is a area starting amount 20 cm higher than a colonscopy can reach.

It was clearly visible on MRI and previously seen on a ultrasound.

As my daughter is a private patient MRI was not covered for us by Medicare either but it is a much cheaper test.
 
Last edited:
At the time dx Sarah's Crohn's disease had spread to the end of the small. The experienced GI dx CD during a colonscopy. The samples taken showed chronic inflammation.

The ultrasound was done 6 months prior when the gp was looking for ovarian cyst due to severe pain. It recommend a GI consultant if there was a clinical reason to believe IBD was a possibility.

Sarah was dx at the time with IBS. She also had a anemia.

In the two months prior to dx she lost 14kg and hemoglobin dropped to 9.
 
My son's disease is in the jejunum (middle section) of the small intestine. It was pinpointed by way of an indium scan. It is a scan done in nuclear medicine and shows where the white blood cells in the body accumulate, and therefore indicates where infection/inflammation is located. I don't see much mention of this test on this forum, but it was really valuable in showing exactly where my son's active inflammation was located. An MRE was also done on my son to take actual images of his intestines.
 
CrohnsKidMom said:
My son's disease is in the jejunum (middle section) of the small intestine. It was pinpointed by way of an indium scan. It is a scan done in nuclear medicine and shows where the white blood cells in the body accumulate, and therefore indicates where infection/inflammation is located. I don't see much mention of this test on this forum, but it was really valuable in showing exactly where my son's active inflammation was located. An MRE was also done on my son to take actual images of his intestines.
Click to expand...
Did the MRE also show the area of disease? Or only the indium scan?
 
Momtotwo said:
Catherine- The disease was NOT visible on MRI but was visible on ultrasound? is that unusual?
Click to expand...


No her disease was visible on both the MRI and ultrasound. The unusually thing is it was visible on a ultrasound.

Fixed my previous post thanks.
 
Momtotwo, The MRE showed area of disease too, so it's kind of like adding another piece in the "making a diagnosis puzzle". The GI did say that MRE images often don't come out clear as you have to be able to remain very still and hold your breath at times. That's often hard for little ones to do. The indium scan won't show narrowing or anything like that, but it's excellent at showing the location of disease and to confirm that there is active infection or inflammation.
 
Catherine - her symptoms are constant nausea & severe cramps for the past 4 years at least & some bleeding & mucous more recently.
Crohnskidmom - I have heard of the white cell scan but our specialist thinks it's a pointless test but like you I have a friend who's daughter was also diagnosed this way so I guess not so pointless. So did they diagnose her with crohns after these tests & start her on treatment or were there further tests?
I'm not concerned about her being able to keep still etc for the MRE as she has had an MRI before but I am concerned about her being able to drink the solution.
Also not looking forward to another 3 week course of Flagyl :-(
How have all of your children been since diagnosis?
 
Are you been seen by a GI clinic at one of the children's hospitals?

Paging DustyKat as she knows the NSW system better.
 
I've always heard how terrible Flagyl is. Every time my son has taken it, things get better. He's on it now and I'm worried cause its over this week. What happens when your daughter is on it? Crazy how this disease is so different in everyone. No wonder they can't get a handle on it!
 
Searching, Other than bloodwork and an ultrasound done in the ER, the indium scan was the first test done on my son, and they were pretty sure it was Crohn's after that. A MRE was done next, and they were more sure, then came the scopes and biopsy results which confirmed the dx. Treatment did not begin until the dx was confirmed, so after the biopsy results were in. He is doing well now. He was on prednisone for over 3 mos, tried Imuran as a maintenance med (but could not tolerate it), and has been on methotrexate injections for over a yr now with good success. All the best to you. These early days are the hardest, but once the testing is done and treatment in place, I'm sure you'll see your daughter improve.
 
My son has had several MRE's, the first of which discovered a stricture in his small intestine. Unlike your daughter though, he had previously been dx'd with biopsies via scopes.

Some kids have no problem with the drink, others need an NG tube temporarily placed so they can pump it in. We've always let my son try and drink on his own first, but he's never been able to do it and always ends up with the NG tube. In some cases, even getting half the contest in is enough for them to get slides. It's kinds of a trial and error thing.

Has she started Flagyl yet? It's worth a try, but if she improves, does that mean she's still without a dx? Did they take biopsies during the scopes?
 
Thank you for your support this is such a difficult time.
Catherine - Yes we are seeing a GI at Randwick Childrens Hospital & the pain management team at Westmead.
Brian'sMom - This will be the third time they have tried Flagyl with her she always gets worse while she is on it & shows no improvement after.
Crohn'sKidMom - Your last sentence made me cry. I am so glad your son is now doing well it gives me hope in this horrible journey. I am so overwhelmed today with the sadness in my daughters eyes as she battles with unrelenting nausea, to function & to be a normal kid. I can only hope 1 day I am able to give the same hope to someone in my shoes.
With her scopes & biopsies it only ever shows mild (not chronic) inflammation that he says would not be causing her symptoms. This is why he's thinking it may be higher where they can't get to with a scope but with medicare not covering the pill cam & the struggles I've heard other children experience with the MRE I wonder how we will ever get a diagnosis & relief for her.
Mehita - I am hoping to get the script in the mail in the next couple days & we will start immediately. Hopefully as you suggested she will be 1 of the ones that has no trouble with the solution for MRE. They haven't mentioned anything to me about the tube so I'm not sure if it's an option. We have to wait until she has finished the course of Flagyl first before they'll do anymore tests so just want to get it out of the way.
Thank you again it's nice to just have somewhere to go where you know someone gets it.
 
Searching, it will get better, it just takes time. Don't lose hope. And don't worry about the MRE. If your daughter has trouble getting the contrast down, they can add water flavouring to it which may help. Or like Mehita said, there's the NG tube. And although it's hard for kids to stay as still as they need to be for the pics, it may be good enough for the dr to see where her trouble is stemming from. Take care!
 
Hi searching

I'm sorry to hear about your girl.

My daughter also gets seen by the team at Randwick children's hospital. The last MRE she had done they suggested we try Osmalax as apparently it's not as bad as their solution, which we were told tasted salty / lemony... But my daughter still had a hard time drinking Osmalax as she said it tasted horrible. As your girl's only 7 l'd be asking about a NG tube.
Good luck.
 
Hi Mehita yes she's had the tests & definitely not celiac.

Hi upsetmom do you mind if I ask which specialist you see?
I will ask about the osmolax as she has had that before & drinks it fine. I will also ask about the NG tube too.
I am wondering wether to tell the specialist that we don't want to do the Flagyl & just move forward with the tests but I'm not sure that would be over stepping the mark or that it would be well received? It just seems like unnecessary & added discomfort for her & it's delaying the tests that could lead to a diagnosis??

Has anyone used Endep (amitriptyline) & had success with it? It's been recommended by the Pain Management Team but she can't start it until she finishes the Flagyl.

Hugs to you all.
 
We've used amitriptyline in the past. It stopped my daughter's diarrhea almost immediately but never helped with her pain. Eventually the diarrhea returned. It also made her terribly fatigued (sleeping 12-14 hours a day) and emotional. Our GI says it works for most kids, my daughter just likes to be an oddball. lol Flagyl has always worked well for her though.
 
We usually see Dr Gupta, but we have seen Dr Lemberg and Dr Day. I find Dr Gupta likes to wait and see what happens. A few months ago Dr Day put my daughter on 6 weeks of Flagyl and said if symptoms don't settle her medication was going to be changed to injections. She still has symptoms but at our appointment yesterday Dr Gupta decided we were going to add another 50mg of Pentasa and wait another month, l don't see the point.
 
Hi upsetmom. Yes I wouldn't last long with that Dr I don't do well with waiting. Like you said what's the point half the time. This can be an extremely frustrating journey & sometimes dealing with the medical system only causes greater frustration. Can you change back to Dr Lemberg? I find him pretty good although Halle has only ever seen him as far as GI specialists go so I don't have anyone to compare him to.
 
Searching, we've never really had a choice of what Dr we see. Right from the start we've been with Dr Gupta and have only seen Dr Lemberg when he wasn't there.

How's your daughter?
 
MLP, when l ring l make the appointment with the IBD clinic. I really don't know who to ask to see the other Dr.
 
You may try calling next time and specifically asking for an appt with doc x.
We would get a random doc if we just call and ask for an Ibd clinic appt .
 
HI upsetmom. There is really no change with her no improvement anyway. She is slowly getting worse again. I'm hoping the Flagyl will help this time. Fingers crossed.
I know what you're saying re the specialist we have the same issue here with general peads once your assigned a specialist under medicare they don't like you changing. We see Dr Lemberg as a private patient though not through the clinic at Randwick. You could try that if you really want a second opinion. it's not cheap though. How are things with you?
 

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