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Crohn's Disease Forum » Parents of Kids with IBD » 12 Year Old Son Undiagnosed. Could it be Crohn's?


01-12-2013, 06:03 AM   #1
got2bperfect
 
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12 Year Old Son Undiagnosed. Could it be Crohn's?

I'm new to the forum but have checked in here and there since my son has been sick.

I don't know where I am at atm. My 12 year old son has been quite ill. It all started 6 months ago now. A virus or gastro bug that never left. It started as D and several per day, a few with blood, then went to C and now normal BM. The whole time he has had constant AB pain and can be severe after eating. He has debilitating fatigue so much so has missed the last term of school. He has mouth ulcers (some very large and painfull) and has suffered joint pain previous to this and more so since he has been sick. Weight loss. He looks pale and sickly. Temperatures on and off. Enlarged nodes in neck.

We have been to numerous doctors and had numerous tests and possible diagnosis. Right now we have to go back to the ped GI as my pediatrician now believes he may have IBD despite negative colonoscopy and endo. A CT scan showed mild free fluid, enlarged lymph nodes in mesenderic region. Blood test have only now come back as elevated ESR all other markers normal. I feel like I'm on a merry go round. Could it be possible to have crohns even though negative colonoscopy and endo. His pain is constant but fluctuates and is just above his belly button could it be isolated to the upper part of small intestine?

The pediatrician has started him on low dose predinosone to see if any improvement...in the meantime we wait for another appointment... any thoughts would be apprecited.
01-12-2013, 07:01 AM   #2
DustyKat
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I am sorry to hear about your son.

So the scopes showed nothing at all?
If disease is in its early stages it is possible to have normal scopes.

It is quite possible for Crohn's to be located in the small bowel only, that is the second most common type, and scopes leave most of the small bowel untouched so has he had any other imaging other than a CT?
If not then perhaps a CT or MR enterograph, a pill cam or even an ultrasound may be useful.

Is the doctor able to palpate any masses in his abdomen, particularly right lower quadrant?

Aside from the standard bloods and inflammatory markers have they tested his B12, Folate, Iron stores, Vitamin D, Magnesium and Zinc?
If not I would request that they be done along with faecal calprotectin.

Most, if not all, of his symptoms would fit IBD so it would be worth pursuing to have solid answers one way or the other.

Good luck and welcome aboard Mum and if have any questions please don't hesitate to ask!

Dusty. xxx
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01-12-2013, 07:41 AM   #3
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Thanks for your reply Dusty.

He has had everything ruled out. Numerous stool samples, all the bloods you've mentioned and many more not the feacal though and has had an AB CT scan which showed the fluid and large nodes. Has had an ultrasound earlier in the piece which showed fatty liver.

I will keep going until we have an answer. I was just surprised that even after the colonoscopy and endo that the doc still felt he may still have IBD.

Hopefully not much longer now. Cheers.
01-12-2013, 08:02 AM   #4
DustyKat
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The colonoscopy will only show just into the terminal ileum at the lower end and part way into the duodenum at the top end. The small bowel is up to 7 metres long so that is a lot of uncharted territory.

Unfortunately normal tests aren't uncommon and a straight CT scan may not give you the answers you need. Push for testing that is specific to the small bowel...enterograph and/or pill cam. The free fluid is coming from somewhere. Also ask that calprotectin be done as it will indicate inflammation that is specific to bowel only.

My daughter had grossly normal tests for nigh on all of her undiagnosed period, she never had scopes as IBD wasn't even close to being on the radar. One week prior to emergency surgery she had a normal CT Scan and what they found when they opened her up did not happen in a week. Actually both of my kids had normal imaging prior to diagnosis with the only mention of anything out of the ordinary being free fluid of unknown significance. I am not saying this is pointing to anything with your son but I just want to point out that normal tests don't necessarily mean no IBD so don't let the docs slough you off with that while ever he remans unwell and undiagnosed.

Dusty. xxx
01-12-2013, 06:34 PM   #5
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Ok. Wow so its not so easy for a diagnosis.

What your saying makes sense. I wish doctors would understand this as obviously not every case is clear cut or by the book. I was made to feel if it was crohns, given where his pain is coming from that it would be extremely rare! I was then told its likely IBS and Chronic fatigue. I have to go back to see THIS doctor (ped GI) now but am armed with the free fluid, enlarged nodes and elevated ESR but negative col and endo. I just hope he doesn't fob me off this time and tell me to just send my son to school he'll be right! the nerve!

Anyhow...

Just one more question if anyone knows... I requested he be put on the prednisone as he's been suffering for to long. The pediatrician agreed. But...If it happens to be crohns is this likely to effect getting a diagnosis?

He will likely be on it for at least two weeks before we get to see the ped GI and have the next round of tests.

Cheers.
01-12-2013, 07:20 PM   #6
DustyKat
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Unfortunately it is not unusual to had lengthy undiagnosed periods. My daughter went undiagnosed for 18 months.

Prednisone can mask symptoms and this can make things difficult if you are seeking a diagnosis. What dose of Prednisone is he on?

I will move this discussion the to forum and its own thread so it doesn't get lost in here.

Dusty. xxx
01-12-2013, 08:01 PM   #7
Devynnsmom
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Hello and welcome to the forum. I'm sorry your son is so sick. My daughter's symptoms started at about 18 mos of age (possibly earlier) and she was *unoficially* diagnosed at 8 years old and that diagnosis was changed and made an official diagnosis last Feb at 10.5 years old. Everything was always either a virus, or some other normal childhood type of illness until she ended up in the emerg in May 2009. At that time she had enlarged lymph nodes in her abdomen and her white count was through the roof. I had actually forgotten until reading your post, that they first diagnosed her with Mesenteric adenitis and then sent her to our local children's hospital where she started seeing a GI. They did a whole whack of tests, leading to the IBD diagnosis.

Did they do any biopsies with the scopes? We switched doctors and met with our new dr's who are an IBD team last Wed. They told me a few things her previous GI had never told me. One of the things they told me is that her scopes all *looked* normal, but it was the biopsies that showed that she has mild ulcerative colitis.
Good luck and I hope he feels better real soon.
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Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
Mezavant Mar 2012- Nov 2012
Sulfasalazine-Nov 2012
01-12-2013, 08:53 PM   #8
dannysmom
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Hi and welcome. I am sorry your son is so sick and understand how you feel. Danny was about your son's age when he first got sick too. I hope the low dose pred can help your son feel better. And, I really hope you have a supportive doctor that can help with any school notes you may need. My son was so sick (fatigue worst symptom) he needed home instruction for 3.5 years ... the school provided the tutors and he has been able to maintain grade level. Good luck and please keep us posted!
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(Danny's story)
01-12-2013, 09:36 PM   #9
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Thanks everyone for your welcoming words and support.

I find it unbelievable that for so many you've had to not only cope with the illness but cope with it alone as its not until something drastic happens that the doctors start treating and diagnosing. I think this is the worst part because as a parent everything falls on your shoulders and if you don't push you dont get answers.

We have also been told mesenteric adenitis. The scopes showed nothing and biospy came back normal. It was only recently his ESR came back elevated that they now want to run further tests.

The fatigue is the worst symptom as he can't function some days. The doctors don't seem to pay much attention to that symptom but I guess they hear that alot. There is definitely inflammation going on and a lot of evidence to point toward it now but I guess it could be from anywhere so I just have to keep pushing.

He's on prednisolone 25mg 1/2 tablet EOD. At this point I think its more important to get him more comfortable and feeling better. Hopefully it helps.
01-12-2013, 11:46 PM   #10
DustyKat
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I don't think Prednisone at that dose would significantly impact a diagnosis.

Often the EIM's (Extra Intestinal Manifestations) of IBD precede the intestinal manifestations so a normal scope could well be on the cards early on in the disease.

Do you track his symptoms?
If not have a look at the diary suggestions we have in the wiki. It can be very useful to piecing the puzzle together when seeking a diagnosis:

http://www.crohnsforum.com/wiki/Diary-Inclusions

I started one late in the piece with Sarah and I found it invaluable. I was amazed when I really thought about it how many little things I forgot when I was living it day in and day out. Also having evidence in black and white makes it harder for health professionals to refute.

Also request copies of all tests, bloods, imaging and so on and doctors letters. I had a file that I kept near the front door and took to emergency or away with us when we went on holiday. It turned out to be godsend! I was far more savvy the second around!

Dusty. xxx
01-13-2013, 03:01 PM   #11
jmckinley
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Welcome. So sorry you are having such a hard time getting a dx for your son. Unfortunately that's pretty common. My son was also 12 at dx. His GP was treating him for ADD of all things when he started getting sick. Well before the GI symptoms started, he became very inattentive, tired, just "blank". Then when he started losing weight, they blamed it on all the GI meds. He was not dx'd until he had so much blood in his stool and ulcers throughout his tract. Angry doesn't approach the feeling when Dr's don't listen!

There are lots of parents here who have kids who look fine on paper (blood tests, etc) yet show signs of a flare. Our bloodwork always matches or is worse than our symptoms, so I can only say I know it exists by knowing that others on here are experiencing it. I hope one of them will come along soon.

I hope that some answers come your way soon. Keep pushing and don't give up on a dx.

Hugs!
01-13-2013, 04:23 PM   #12
upsetmom
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Welcome
I'm sorry to hear about your son...

My daughter was sick for a year before she was diagnosed.
Her bloods and stool samples always came back pretty normal.
We kept getting told try taking this and that out of her diet but nothing ever worked.
It was when she started bleeding that our GP took things more seriously.

Keep pushing till you get some answers.
01-13-2013, 04:46 PM   #13
Sascot
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Hi and welcome. Sorry to hear about your son. I know what it's like, although my son's symptoms weren't as bad as yours, it took us a year and a half to get diagnosed. I agree it's worth giving him the Pred as you can't guarentee when they will reach a diagnosis. At least if it helps, maybe it does point to something such as Crohns. Hard to sit and do nothing at all. Hope they manage to gain a diagnosis soon so you can get him some treatment!
01-13-2013, 05:00 PM   #14
my little penguin
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Same here normal bloods and imaging for close to a year- only the biopsy results indicated crohn's .

Keep pushing you know your child best
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01-14-2013, 08:52 PM   #15
got2bperfect
 
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Thanks for the comments. His blood does show signs of inflammation so I am hoping this will prompt further testing.

Unfortunately so far the prednisone doesn't seem to be doing much. I presume it will take a while.

He is having a bad day today and is confined to the lounge. He keeps getting these weird temperatures. His temperature will be really high for a while (less than an hour) then drop back to normal for a while then rise again... this seems to coincide with the days he rates his fatigue and pain an 8.

We are back to the ped GI on the 25th and I really hope he will help him.
01-14-2013, 09:03 PM   #16
Farmwife
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Welcome.
Same here. My girl had normal bloods.

Hugs
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
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dx Erthema Nodosum
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