Undiagnosed 12 year old son, next test MRE

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got2bperfect

Joined
Jan 12, 2013
Messages
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Hi all,

I posted before about my son and it was great to get the support.

We went to see the ped GI today and thankfully he was a lot more supportive.

Just a recap of his symptoms: our son has been sick for almost 6 months now. It started with a virus or gastro bug that never left. He had diarrhea, fatigue Ab pain etc initially but his symptoms of late are fatigue often debilitating, mouth ulcers, AB pain which is constant and fluctuates after meals, temperatures, also had bouts of joint pain. His bowel movements are now normal. He missed half the year of school as he was to sick.

What we know: He has had a colonoscopy and endoscopy that has come back clear but the ped GI looked at results today (was done by a different adult GI as this ped GI wait was 6 months) and felt they weren't thorough enough? His CRP is up 47, he has had a CT scan and diagnosed as having possible mesenteric edenitis. He was prescribed a low dose of prednisone by our ped after his bloods came back high CRP (been on for about 2 weeks) which is the only thing that has helped his abdominal pain and fatigue. (hasn't fixed him but noticable improvement).

What we have to do now: We have to get him off the prednisone (not looking forward to seeing him in more pain and he is due to start school next week which I really wanted him to be well enough to start!) and have to take him to have a MRE in two - three weeks once prednisone wears off. He is back on his list for another colonoscopy and mentioned the capsule if nothing shows.

The doctor feels that the symptoms fit but said the constant pain is rare and it will make for an interesting case if it is crohn's...

My baby was in tears after it. He's been so strong all along but I guess he knows that he is going to start feeling unwell again and we are back on the merry go round. I hope it is only a matter of two weeks for him and we will know what we are dealing with. I of course wish this was all a dream and he wasn't sick and that he doesn't have crohns at all but most of all I just want him better and back to normal.

QUESTIONS....

Just wanted to know if anyone else's child has been diagnosed by an MRE? How accurate is it?

The doc felt given his symptoms that it will show up.

Has any other kids had constant AB pain that fluctuates after eating and often worse first thing in the morning? Its mainly in the middle just above his belly button.
 
Hello - sorrry to hear he is feeling so badly.

MRE's are pretty darn accurate in the hands of a qualified, experienced radiologist.

I agree with doc, if my laymom opinion counts for anythng.

I'm thinking this is not an pediatric IBD specialist? Abd pain is not uncommon. After meal pain may be due to peristallsis stimulating inflammaed tissues. my son is almost always nauseated and sometimes has belly pain the mornings. alwayshas . Don't know why but it seems crohn's related. it may correspond to his having a BM, don't know.

Hydration can be a huge factor for kids with Crohn's and it is often ignored when symptoms don't seem to make sense. I would make sure he is well hydrated every day, all day for several days and see if that helps. Hydrated means his pee is clear. He should not be drinking beverages that are diruetic like coffee, colas, caffeine, etc. plain water is best.


did the doctor tell you anything to do to help his pain?

1. acetaminaphen?
2. benadryl (diphenhydramine) can work as well or better than the first
3. practical measures like
warm bath
gently tummy rub going in a clockwise direction
hot packs - we use rice packs or socks filled with rice, tied shut and warmed in the microwave
 
Great advice thanks Patricia. I think the mums on here know a lot more than some of the specialists :)

The ped GI suggested we see the radiologist in Sydney as he was more experienced and the equipment was more advanced? so I'll definitely be sure to book in there.

I probably didn't explain it properly but I think the ped GI meant the constant pain and location was uncommon. He said usually it is more spasmotic not constant and obviously LRQ.

His bottom lip is always dry and cracked. We make sure he drinks plenty of water but its obviously not enough. So I'll be sure to top him up.

Cheers.
 
About the mouth ulcers, my son frequently had them until until we became very vigilant with his B-vitamin intake. He rarely has them now. Good luck in Sydney!
 
My daughter just had an MRE and it showed no inflamation. She was diagnosed through upper and lower scope and biopsies (from scope). Devynn has almost constant AB pain when she is flaring. Her's is quite often LRQ. I would try to get a ped GI if at all possible. If not, see if you can find someone who specializes in IBD.
We just found out (after 3.5 years) that Devynn's doctor, who I THOUGHT was an IBD dr was just a GI. She actually specializes in celiac. We have now been switched to the IBD team at our Childrens Hospital, which is known worldwide (The Hospital For Sick Children)
Good luck!
 
The MRE did not show our daughter's Crohn's, but the capsule endoscopy did 9 days later. I think it depends on whether there are complications like strictures, fistulas, abscesses? I'm not an expert (I'm new at all this). Our experience is constant abdominal pain in the center of her stomach on bad days (sometimes that is most days). I hope they can figure out what is happening with your son and soon.
 
Hi, my daughter also has constant pain when she is flaring. Hers moves around though RLQ is the most frequent site. Like the others said MRE is a good test. However if it does not show anything definitly ask about a capsule endocoscopy also called a pill camera. If they do decide to do one make sure they do the dummy camera first to be sure it can pass through and there are no strictures to hold it back.
 
kimmidwife said:
If they do decide to do one make sure they do the dummy camera first to be sure it can pass through and there are no strictures to hold it back.
Click to expand...

I think the MRE will help to see if there are strictures prior to the camera study as well.
 
My son (undiagnosed) has constant pain (4 years now) located near his belly button like your son. It is sometimes worse (with a larger location) after eating and his pain is always worst in the morning. I am sorry your son needs to come off the pred before the imaging, but understand the GI's recommendation. Good luck!!!
 
Thanks for the replies and advice.

I will certainly continue with further testing if nothing shows on the MRE and if he is not better but I am just hoping we wont need the pill cam as it costs $2000. Apparantly our government doesn't fund any of these "new" tests.

The ped GI we are now dealing with specialises in Crohns so he knows his stuff and I'm confident we are in good hands thats if we are in the right place!
 
got2bperfect said:
Thanks for the replies and advice.

I will certainly continue with further testing if nothing shows on the MRE and if he is not better but I am just hoping we wont need the pill cam as it costs $2000. Apparantly our government doesn't fund any of these "new" tests.

The ped GI we are now dealing with specialises in Crohns so he knows his stuff and I'm confident we are in good hands thats if we are in the right place!
Click to expand...

I don't know how our dollars compare, but that sounds like a good price on the pill cam. It was $7023 here in Alaska. Thankfully our insurance paid all but about 600. I'm hoping our secondary insurance will pick that up.:cool:
It's good to hear that you have a good ped GI - makes all the difference!:thumleft:
 
Hugs ...
DS had constant abdominal pain which increased with food etc...
His mre was normal . He was suppose to get a capsule but insurance said "no"
Thankfully - remicade kicked in and his pain his gone.
He only occasionally gets spasms now.
 
got2bperfect said:
Hi all,
QUESTIONS....

Just wanted to know if anyone else's child has been diagnosed by an MRE? How accurate is it?

The doc felt given his symptoms that it will show up.

Has any other kids had constant AB pain that fluctuates after eating and often worse first thing in the morning? Its mainly in the middle just above his belly button.
Click to expand...

So good to hear that you are happy with GI. :)

Matt wasn't diagnosed by an MRE. The Gi diagnosed him on the spot when he scoped him but he did not want to push through the inflamed terminal ileum so he went for a CTE the following day. It was very accurate at showing the inflamed area and was spot on with the amount of bowel affected as evidenced by the surgical pathology 4 months later.
Matt had the more classic presentation of pain.

Sarah on the other hand did not have a classic Crohn's presentation. Her pain started out as intermittent but did eventually become constant. Looking back though I do wonder if her being undiagnosed for so long mean't that she did live with a lower level of pain that became a normal part of life for her. Although it breaks my heart to think of it I can only think she did as when her bowel perforated the highest she ever rated her pain was a 7/8. :(:(:( For 99% of her undiagnosed period her pain was located in her upper abdomen (epigastric). Her disease is located in her terminal ileum.

Good luck with the scan!

@CarolinAlaska:

1 AUD dollar = 1.04 US dollars. Makes for very good internet shopping for us! :lol:

Dusty. :heart:
 
Thanks for all the info!

He's not doing to well now and a Big difference now he's off the prednisone.

I seem to have found a link between his pain and temperatures. The other day he had chicken and corn soup with toast.

His temperature went up just after eating along with his pain. His normal is about 36.5 after he ate his pain fluctuated and his temp went up to 38.2 then went back down 5 minutes later? I recorded it in my diary along with a photo of temp reading.

The same happened after dinner that day.
All really strange and seems to coincide with eating.

He is having a really bad day today but no temperatures mainly pain and fatigue. I'd forgotten what it was like to see him like this. I really hope we get to the bottom of this sooner rather than later.

I've taken everyone's advice and I've started a diary of symptoms as well as photographic evidence of ulcers and temp readings.
 
Sorry to hear your poor boy is getting worse again after weaning the Pred. I don't have alot of infor on tests as my son was diagnosed from his colonoscopy/endoscopy and biopsies. Good luck with all the testing. Hope they get it done asap so that he can start getting some treatment to help!
 
Sorry he's in pain. I don't think I've ever heard of such wild temp swings before. Have you an appt for the MRE? Soon, I hope!
 
Sorry to hear he is not doing well again. Did you get that MRE appointment yet? Also at CarolinAlaska, it is recommended to do a dummy pillcam even after an MRE I have heard that the MRE doesn't always show everything and people have had issues even with normal MREs
 
Last edited:
kimmidwife said:
Sorry to hear he is not doing well again. Did you get that MRE appointment yet? Also at CarolinAlaska, it is recommended to do a dummy pillcam even after an MRE I have heard that the MRE doesn't always show everything and people have had issues even with normal MREs
Click to expand...

Oh... They didn't do one on Jaedyn. I figured it was because the MRE was okay...
 
I haven't booked in his MRE yet. The ped GI wanted us to get him off the prednisone for 2 weeks first prior to having the test. I'm not sure I can do this. We are trying to call him to check if we do have to wait that long. He is not doing well at all. I can't imagine waiting another week with him like this.
 
You might want to ring up and make the appointment as i know a lot of places you can't get in straight away....unless your GI gets you in straight away.

When my daughter had to have one done there was a waiting list of 6 months at the Childrens Hospital in Randwick....so we decided to get one done privately at Wollongong and we still had to wait 2 weeks.

Good luck and i hope they get him in soon .....hopefully you'll get some answers.
 
Are you still tapering the pred? When will he finish? They could go ahead and at least schedule him couldn't they? That way you would have a definite appt. Even if you did get it done somewhere else, you could just cancel.
 
It's really horrible watching your child suffer! Hope the GI gets back to you soon. Definately worth scheduling the test soon just in case!
 
Definitely schedule the mre .
As far as the pred . If its not out of his system the test won't be very helpful
Also since pred treats a whole host of diseases it is very important to know which one you are fixing so the right meds can be given later on.
DS is a very good example most of his early symptoms were upper Gi stuff
Add allergies and Gi was confident it was egid
Pred would fix it but the next part of treatment is not the same as Ibd
Thankfully as hard as it was he was able to stay off pred long enough for a scope to rule out egid and in Ibd .
 
As above, definitely schedule the MRE.. Really can't hurt and hopefully will give you some answers.

I also think that testing while on Pred can give negative results as it seems to taper lots of symptoms down.

We're going through that now, not nice, but hopefully we will finally get something they can work with!
 
GI hasn't got back to us yet but I think he is going to want him to wait to give him the best chance of the test giving some answers.

I've scheduled the appointment for Tuesday 12th of Feb which will be just over two weeks off the prednisone.
 
Well, finally got results of MRE and came back all clear.

The ped GI said he has ruled out crohns disease. I tend to believe him however still have a very sick and upset son. He has referred us to an immunologist. He has the AB pain and it fluctuates after eating and worse in morning. Low grade fever occassionally and constant fatigue. He has these sores or scabes that frequently come up on his face (not zits) and he looks pale and sickly. On and off joint pain, mouth ulcers, vasculitis type rash on arm, enlarged lymph nodes in neck, BM normal.

He said we could do the capsule endoscopy but he feels certain nothing will show up and we would be wasting our money.

I am running out of energy! and so wish I could fix him.

He has previously been on a low dose of prednisone and it lifted his symptoms and pain. Whatever is wrong with him the prednisone worked. I feel like just giving it to him so we can all just have a break from this and revisit it when we've gathered some strength.

I want him to go to school, my husband has taken long service leave to look after him and its effecting all of us emotionally and mentally.

I just want my baby back.

What do I do????

(had endo/colonoscopy:clear on scope and biopsy although ped GI did say the Gi who did it wasn't thorough enough, bloods CRP up all else normal (had many tests), CT scan enlarged lymph nodes in abdomen and small amount free fluid: messenteric adenitis, MRE just small amount free fluid rest clear.)

Been sick since had a gastro bug on 18/8/12.
 
I'd go for the video endoscopy. It wasn't until we had that that the diagnosis was clear. You've got to see in the small bowel to see if there is inflammation. Our MRE was normal but the video endoscopy told a different picture - she had inflammation throughout. I think the immunologist is a great idea too. Keep holding on and praying, it will get figured out. Hopefully sooner than later!
 
I would have a faecal calprotectin test done. This test is not covered by Medicare, it costs somewhere between $40-$120. Get quotes from the labs.

If you get a low reading I would think about trying the FODMAP diet. I have tried this diet and ibs got much better on it. Sarah tried the diet with no improvement.
 
Sorry you didn't get any answers! I'm sure you are at the end of your tether by now. Hang in there mom!
 
Sounds like a very similar story to ours! It is just so frustrating and horrible to see your child so sick.

We are hopefully getting an MRE done with my daughter and I am really hoping that shows what is going on. If not I just don't know!

What does your GI suggest doing next?

Big ((((hugs))))

:ghug:
 
Thanks Niks and goodluck with your daughter I hope it is the end of wondering and worry for you.

We are definitely at the end of our tether.

I know this should be good news... but with no answers we cant begin to treat him let alone fix him.

He gave us a referral to an Immunologist but I doubt it will help as he has had many immunology bloods done previously before being referred to the ped GI.

Part of me doesn't trust this doctor. I feel like he forgets what is going on with him. He asks questions he's asked 3 times before and changes his tune every visit we have. The last time we saw him he was more convinced it was crohns and that if it didn't show on MRE then he needed a capsule. This time saying no IBD and don't bother with capsule.

I might go back to my pediatrican see what he thinks and order the fecal calprotectin test and more bloods and if something shows go to another ped GI and get a second opinion. Problem is doing all this will take at least a month!

It really sux but having some sort of plan is the only thing that keeps me going.
 
Second opinion is where we're heading too, but it isn't that simple, it all takes precious time. In the UK you need re referring and it can take ages :ack:

Good luck with your boy!

:ghug:
 
Oh gee ... I can so relate to how you are feeling! Have you been to a rheumatologist yet? With the occasional joint pain, I think you should be able to get an appointment. They run a whole slew of other tests. Does your son's school provide tutors that come to your home? My son missed 3.5 years of school, but now is doing better (although far from normal) and is able to attend ... having tutors at home kept him from falling behind. I think you should get another opinion ... it will help you accept whatever answers come or do not come. We've seen 4 pediatric GIs ... and >20 other specialists .... and we are still in limbo land. Our GI has said he has seen young teenage boys with similar symptoms before, and a diagnosis was never evident, and they just improved once they were about 18. Good luck!
 
http://books.google.com/books?id=rn...X&ei=fiAoUcmjLqiI0QHwnICoBw&ved=0CDgQ6AEwAzgK


Behçet syndrome is characterized by recurrent aphthous ulcers, genital ulcers, and uveitis or retinal vasculitis. Other manifestations of the disease include skin lesions, arthritis, GI lesions, CNS involvement, and vascular lesions, including aneurysms and thrombosis. In Behçet syndrome, the basic lesion is vasculitis. Biopsies have shown vasculitis near affected lesions, including the oral and genital ulcers and lesions of the CNS and the eyes; large vessels are affected by a vasculitis of the vasa vasorum. Vascular injuries may be superimposed on the hypercoagulability observed in some patients.

Neutrophilic hyperfunction is observed in patients with Behçet syndrome with neutrophilic infiltration of skin at the site of a prick with a sterile needle (the pathergy test). Lymphocyte function has also been reported as abnormal, with a clonal expansion of autoreactive T cells.
Click to expand...

From :
http://emedicine.medscape.com/article/1006358-overview#showall
 
Very Interesting My Little Penguin. Thanks. I can see some similarities here.

Especially the lesions he's getting on his skin. I'm definitely going to look into this a little further and ask the pediatrician what he thinks next visit. I'm really at a loss but I know this is something and perhaps after seeing the ped, the immunologist is the next step.

Thanks for your help and the informations my little penguin. Its more than any doctors given me!
 
Thing with behcet s is you can just have mouth ulcers and nothing else for a long time and still have it.
Kids present differently than adults.
Since effects multiple systems you and has flares that wax and wane you can get joints flaring one time then mouth ulcers the next a few weeks later diarrhea.
It is very hard to dx if they are not looking for it.

Best of luck
 
Wow OK. Again it makes sense. He had bouts of joint pain from the age of 6 which I thought odd but put it down to "growing pains" although none of my other kids ever experienced it.

He has also been in hospital every year for croup that affected his airways and needed prednisone and to be monitored. This was every year from the age of 2 to 10 years when they are meant to outgrow it. Always found it ODD! Yes its a virus but I always wondered if their was some sort of inflammatory or immune thing going on there making it worse.

There was also an episode of mouth ulcers when he was 7 and he had really bad breath and I was always on his case (poor kid) as thought he wasn't brushing. Took to doctors and dentists and they didn't think it was anything. It eventually went and I just forgot about it.

Maybe I need to see an immunologist and bring up EVERYTHING and put the pieces together. I dont know if its all connected somehow but I've previously dismissed these things as nothing but maybe its something and speaking to the right specialist might get the right tests and the right treatment. Whatever it is its not little now and is severely impacting his life and ours.

Thanks again my little penguin! How do you know so much?
 
Unfortunately a friend's child was undx with crohns then later after a year of misery they put the pieces together that it was behcet s .
Before that I had never heard of it.
The mouth ulcers in behcet s tends to typically last 10-14 days then poof gone .
Only to come back later.
Hope you get to the bottom of it .
 
Sorry to hear you are no further forward! I remember having that issue before with my son (and daughter). The doctors/nurses kept smiling at me and saying "well that's really good that test came back clear", all I wanted to do was scream and say I would rather the test showed something so that you can make them feel better. It took a year and a half for my son and 5 years for my daughter. Just keep pushing - I know it's exhausting, but what else can we do. Good luck, I agree it's worth going back to an immunologist.
 
This sounds exactly like my 12 yr old boy now. Did you end up going and trying the capsule endoscopy?
I have it booked in this Thursday but not sure as I am trying to work out costs. I was told $1000 out of pocket as it is not covered. But I am trying to find out if my health fund will cover the admittance as that will be costly as well. I need to be informed but at this point after having proctitis, it could have spread but who knows. Dr thought it was crohns, then was going to to MRI, then decided no, then I have done breath tests and came back sorbitol intolerance, but he doesn't have any of that anyway.
I just want to rule it out. If it is ibs then we can move on. I have bought some enternal formula to give to him if I get desperate.
 

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