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10 yr old being tested for Crohns

Hi there – I am posting in this forum because this is what he is being tested for. He has NOT been diagnosed as of yet but would like to get some feedback from others that are familiar with Crohns. I am in no way looking for a diagnosis from anyone…just a very concerned mama looking for feedback.
As an aside – my son would not eat solids his first year of life – they kept saying it was behavioral but as a mom I knew something was wrong. Finally a friend of mine is an OT said it isn’t behavioral. He was constantly getting pneumonia and lung infections. Long story short we were sent to Hopkins and after several tests and meetings with a Gastrenologist, pulmonary, and otanlaronologist they did an endoscopy and realized he had a type 2 laryngeal cleft meaning he basically had an opening between his esophagus and his larynx. Very rare. It was causing him to aspirate and get infections..he underwent surgery and they repaired the cleft. For the first time in his life at almost age 4 we saw him eat a waffle and it was one of the best days of my life.

Anyways, flash forward – even still he is constantly getting sick – his stools are almost always loose fluffy pieces, sometimes watery, every once in a while he will have a formed stool but always still accompanied with looser fluffy pieces all around it and particles of food. It is also always a light almost yellowish tan. I have 2 other children and their stools never look like this. He also has always had BAD gas pain….literally nothing I ever have seen before…he passes gas over 100 times a day…and I love my little guy but they could clear a room in a matter of seconds…it’s an ongoing joke with his friends and our family…we have never smelled or heard anything like it…Ive mentioned it to his doctors several times and they chalked it up to lactose so I cut him from dairy for several months to no avail. Then they suggested he get tested for Cystic Fibrosis because he also has asthma so we did the sweat test and the conductivity level was 39. They ruled it as a negative. This was back in 2015 – shortly after my brother was diagnosed with cancer, my mom passed away very suddenly, my dad fell from a tree and broke his back and neck, my FIL passed away, and I was diagnosed with HELLP syndrome with my youngest – all within 6 months – so needless to say I was emotionally wiped out and kind of put everything on the back burner as I helped care for my brother and dad. My little guy continued with the loose stools and also started getting mouth ulcers A LOT..several a month and I feel like he rarely doesn’t have one in his mouth…I began to ask my pediatrician questions again…
He is also extremely skinny and the smallest in his class – 2 years ago it was he and 2 others that were the smallest but as time went on the other 2 grew and left my poor little guy as the smallest by several inches and pounds (he is one of the oldest in his class too)..so when we went for his 9 yr check up his doctor noticed he hadn’t grown in a year and half so then he finally started to get concerned…we started coming every 3 months for a check and finally when we went for his 10 year check he did grow but still is around 2% on the charts for height and weight. My husband is 5’9″ and I am 5’4″ – my daughter is 8 and has almost 20 lbs on him – she and my other daughter are in the 50 percentile for height and weight…I mentioned to the doc that he was still having these issues with his stomach…severe pain, severe gas, loose stools, he also chokes constantly when he eats and he said it is because his stomach always feels upset, and he has been getting mouth ulcers constantly..he finally decided to send us to Hopkins again. He wakes up frequently in the middle of the night from abdominal pain – I get up with him and we do stretches and gas exercises to help until finally he goes back to bed. Also, lately I have noticed he is just exhausted…he always says his legs can barely carry him and he needs to sit down. His other issue was he was having accidents at school (pre-pandemic) and would spend his lunch in the bathroom…He does have accidents frequently where he doesn’t make it to the bathroom in time and/or when he passes gas mucous stool comes out (this happens quite often)..So we met with the doctor a few weeks ago – she wanted to do blood tests, stool tests, X-rays, and colonoscopy and endoscopy. So we just got results from blood – she said it all looked normal – when I checked the only things that were elevated were BUN/Creatine Ratio was 35, and his A/G Ratio was really high at 2.6..his white blood cells are always just enough to be in the red flag low but not enough for the doctors to make a big deal about it, and I noticed he had a 1% for Immature granulocytes. CRP was <1, Sed rate was 3, IGA, Serum was 123, TSH was 2.850, Transglut was <2, Giardia is Negative, CDiff Negative, and Occult Blood Negative. Calprotectin was 40, and stool culture is clear. Negative for Celiac twice. I am shocked because if you could see the kind pain he is in it is horrible – he will just keel over and cry and say he can’t breath the pain is so bad. He said it feels like something is inside of him trying to escape when the asked what the pain feels like - he said that he has gotten so used to it because he feels pain more often then not which is crushing to hear. As I mentioned above he constantly has these mouth ulcers (I switched his toothpaste to SLS free a year ago to no avail - unjust the past 3 weeks he has had 3) and also gets random bumps around his mouth, and he also gets sores on and his nose, and on his legs (Ive always thought the ones on legs are bug bites as we live on the water and have many mosquitos but regardless they take forever to heal and start pussing). The latest things I have noticed is twice in the past 2 months his eyelid has gotten so red and swollen it was almost shut. He is constantly messing with his eyes saying they burn. And he has been complaining that his fingers hurt when he bends them.
So this is our story – I am so grateful for anyone reading this and giving feedback. I just feel frustrated. He is the sweetest, kindest little guy and I love him so much and want him to just feel good. Based on his normal blood work and stool samples so far it makes me question whether I should put him through being put under for a colonoscopy and endoscopy. His doctor said that she thinks it is absolutely necessary because she is very convinced something is wrong - she said she has many patients that have normal labs and stool tests and the scopes tell a totally different story. Part of me asks myself are we reaching for something that isn’t there but then I see him in so much pain and it breaks my heart. Thank you again so much for reading.
 
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So sorry to hear about your little guy. I can only imagine how you must feel as well. Definitely it would be a good idea to get the colonoscopy/endoscopy done. The procedure itself isn't difficult, it's the prep that is more challenging. You have come to the right forum. It would be good to get some sort of diagnosis so that you can get your little guy treated. No child should have to go through this.

You will find many parents (mostly mothers) on this forum that are nothing but kind and have many years of experience behind them - @crohnsinct @my little penguin @Maya142 @Pilgrim - who may have some supportive words to offer. Hugs
 

my little penguin

Moderator
Staff member
So Ds was dx at 7 with crohns
His bloodwork is almost always “normal “
He dx at 10 with arthritis and age 12 with an auto inflammatory disorder (they think sweets syndrome )
He is now almost 17
Weight should be going up as well as growth

Those are big red flags for a Gi disorder
Make sure to get a dermatologist involved for the skin lesion sometimes they can be the key to figuring things out

Kids are tricky and it took us years to get to a mostly good point
 
Thank so very much for your replies. Just hearing from someone makes me feel better. They just scheduled his scopes for September 14th which also happens to be my daughter's 9th birthday but he is seeming to get worse so we need to get it done. They also want him to have an MRE - would any of you suggest he does that first or after the scopes? What will the MRE show? He had an X-ray done which showed no obstructions but a TON of gas.

He has been dealing with the accidents, mouth issues, diarrhea and severe pain for several years...I have brought it up for some time but they kind of overlooked it...he has really bad asthma as well so they did test him for CF because between the stomach issues and asthma they were concerned - of course it came back borderline but they ruled it as a negative but then when we went for his 9 yr check up the doctor finally was really concerned because he hadn't grown or gained weight in a year and a half. As of now he turned 10 in May and he weighs 54-56 lbs (it actually ranges even more when he is having bad diarrhea) and is about 50 inches tall - way below any of his friends and my daughter who is currently 8.

Thank you again for responding!
 

my little penguin

Moderator
Staff member
We typically clean out for scope
Do scope
Then MRE later that day or next day since he is already cleaned out

But in the begging we did scope and the MRE a few weeks later
Just depends on schedule
 
I agree with MLP. MRE is good for detecting small bowel Crohns especially since there are parts of it that neither an endoscopy or colonoscopy can reach. Small bowel Crohns (duodenum, jejunum) is also less likely to cause a high fecal cal number do to being higher up in the digestive tract. I have jejunal Crohns and your sons symptoms sounds similar to mine prior to diagnosis and treatment. All the best and keep us updated!
 
I agree with MLP. MRE is good for detecting small bowel Crohns especially since there are parts of it that neither an endoscopy or colonoscopy can reach. Small bowel Crohns (duodenum, jejunum) is also less likely to cause a high fecal cal number do to being higher up in the digestive tract. I have jejunal Crohns and your sons symptoms sounds similar to mine prior to diagnosis and treatment. All the best and keep us updated!
Hi there – I am posting in this forum because this is what he is being tested for. He has NOT been diagnosed as of yet but would like to get some feedback from others that are familiar with Crohns. I am in no way looking for a diagnosis from anyone…just a very concerned mama looking for feedback.
As an aside – my son would not eat solids his first year of life – they kept saying it was behavioral but as a mom I knew something was wrong. Finally a friend of mine is an OT said it isn’t behavioral. He was constantly getting pneumonia and lung infections. Long story short we were sent to Hopkins and after several tests and meetings with a Gastrenologist, pulmonary, and otanlaronologist they did an endoscopy and realized he had a type 2 laryngeal cleft meaning he basically had an opening between his esophagus and his larynx. Very rare. It was causing him to aspirate and get infections..he underwent surgery and they repaired the cleft. For the first time in his life at almost age 4 we saw him eat a waffle and it was one of the best days of my life.

Anyways, flash forward – even still he is constantly getting sick – his stools are almost always loose fluffy pieces, sometimes watery, every once in a while he will have a formed stool but always still accompanied with looser fluffy pieces all around it and particles of food. It is also always a light almost yellowish tan. I have 2 other children and their stools never look like this. He also has always had BAD gas pain….literally nothing I ever have seen before…he passes gas over 100 times a day…and I love my little guy but they could clear a room in a matter of seconds…it’s an ongoing joke with his friends and our family…we have never smelled or heard anything like it…Ive mentioned it to his doctors several times and they chalked it up to lactose so I cut him from dairy for several months to no avail. Then they suggested he get tested for Cystic Fibrosis because he also has asthma so we did the sweat test and the conductivity level was 39. They ruled it as a negative. This was back in 2015 – shortly after my brother was diagnosed with cancer, my mom passed away very suddenly, my dad fell from a tree and broke his back and neck, my FIL passed away, and I was diagnosed with HELLP syndrome with my youngest – all within 6 months – so needless to say I was emotionally wiped out and kind of put everything on the back burner as I helped care for my brother and dad. My little guy continued with the loose stools and also started getting mouth ulcers A LOT..several a month and I feel like he rarely doesn’t have one in his mouth…I began to ask my pediatrician questions again…
He is also extremely skinny and the smallest in his class – 2 years ago it was he and 2 others that were the smallest but as time went on the other 2 grew and left my poor little guy as the smallest by several inches and pounds (he is one of the oldest in his class too)..so when we went for his 9 yr check up his doctor noticed he hadn’t grown in a year and half so then he finally started to get concerned…we started coming every 3 months for a check and finally when we went for his 10 year check he did grow but still is around 2% on the charts for height and weight. My husband is 5’9″ and I am 5’4″ – my daughter is 8 and has almost 20 lbs on him – she and my other daughter are in the 50 percentile for height and weight…I mentioned to the doc that he was still having these issues with his stomach…severe pain, severe gas, loose stools, he also chokes constantly when he eats and he said it is because his stomach always feels upset, and he has been getting mouth ulcers constantly..he finally decided to send us to Hopkins again. He wakes up frequently in the middle of the night from abdominal pain – I get up with him and we do stretches and gas exercises to help until finally he goes back to bed. Also, lately I have noticed he is just exhausted…he always says his legs can barely carry him and he needs to sit down. His other issue was he was having accidents at school (pre-pandemic) and would spend his lunch in the bathroom…He does have accidents frequently where he doesn’t make it to the bathroom in time and/or when he passes gas mucous stool comes out (this happens quite often)..So we met with the doctor a few weeks ago – she wanted to do blood tests, stool tests, X-rays, and colonoscopy and endoscopy. So we just got results from blood – she said it all looked normal – when I checked the only things that were elevated were BUN/Creatine Ratio was 35, and his A/G Ratio was really high at 2.6..his white blood cells are always just enough to be in the red flag low but not enough for the doctors to make a big deal about it, and I noticed he had a 1% for Immature granulocytes. CRP was <1, Sed rate was 3, IGA, Serum was 123, TSH was 2.850, Transglut was <2, Giardia is Negative, CDiff Negative, and Occult Blood Negative. Calprotectin was 40, and stool culture is clear. Negative for Celiac twice. I am shocked because if you could see the kind pain he is in it is horrible – he will just keel over and cry and say he can’t breath the pain is so bad. He said it feels like something is inside of him trying to escape when the asked what the pain feels like - he said that he has gotten so used to it because he feels pain more often then not which is crushing to hear. As I mentioned above he constantly has these mouth ulcers (I switched his toothpaste to SLS free a year ago to no avail - unjust the past 3 weeks he has had 3) and also gets random bumps around his mouth, and he also gets sores on and his nose, and on his legs (Ive always thought the ones on legs are bug bites as we live on the water and have many mosquitos but regardless they take forever to heal and start pussing). The latest things I have noticed is twice in the past 2 months his eyelid has gotten so red and swollen it was almost shut. He is constantly messing with his eyes saying they burn. And he has been complaining that his fingers hurt when he bends them.
So this is our story – I am so grateful for anyone reading this and giving feedback. I just feel frustrated. He is the sweetest, kindest little guy and I love him so much and want him to just feel good. Based on his normal blood work and stool samples so far it makes me question whether I should put him through being put under for a colonoscopy and endoscopy. His doctor said that she thinks it is absolutely necessary because she is very convinced something is wrong - she said she has many patients that have normal labs and stool tests and the scopes tell a totally different story. Part of me asks myself are we reaching for something that isn’t there but then I see him in so much pain and it breaks my heart. Thank you again so much for reading. Please be kind.
Thank you so much for your replies. I am sorry for all of the questions. I kinda feel like a lost puppy with all of this stuff. When he had surgery when he was 2 my mom was here and she would make me feel better about everything...since losing her a few years ago I just feel kind of alone and afraid so I really appreciate being able to turn to this forum for advice.

From what I have read it sounds like 70-80% of Crohn's patients have it in their small bowel...if the scopes can't really see the small bowel why do they usually do those first? Also, I have the option of getting the MRE between now and September 14th when he gets the scopes (that was the soonest they could get him in for scopes) - would you still recommend just waiting until after the scopes? I am just anxious to find out what is wrong but if you think that makes more sense then I'm on board! Thank you again!
 
So Ds was dx at 7 with crohns
His bloodwork is almost always “normal “
He dx at 10 with arthritis and age 12 with an auto inflammatory disorder (they think sweets syndrome )
He is now almost 17
Weight should be going up as well as growth

Those are big red flags for a Gi disorder
Make sure to get a dermatologist involved for the skin lesion sometimes they can be the key to figuring things out

Kids are tricky and it took us years to get to a mostly good point
What were the beginning signs of the arthritis? Ive noticed he complains of his legs hurting a lot and now he is saying his hands feel weak and sore when he wakes up and his fingers sometimes hurt to bend. Thank you again!!
 
Hi, scopes usually are enough to capture if there is Crohn's, however, sometimes MRE is necessary. I personally would wait for results of scopes. They will also do biopsy of the colon lining to confirm if it is crohn's during the colonoscopy. The results usually take a week for the biopsy. Do you have a GI specialist at this time? Also you might want to follow-up with a rheumatologist. It does sound like there might be something going on. My son also has enteropathic arthritis but for him it affected his hips/spine so his symptoms were exhibited with his walking.

Please feel free to ask anything on this forum. This is a safe space for support.
 

my little penguin

Moderator
Staff member
For little kids they want the full picture
Which means MRE and scopes are both necessary
MRE looks scary (iv in the hand ) most let the parent sit with the kiddo in the mri room
They will feel sick and barium drink (breeze looks lije sprite ) but overall very easy to do
Definitely get the MRE done the soonest you can
Given how many issues he has and for how long
Better to know
A Rheumo can tell of JIA is involved
Kids woth crohns especially boys can have ERA or JSpA type of arthritis

FWIW Ds prefers MRE to scopes
And asks to have that done first to see if they get enough info there ....
Typically scopes are needed as well
And capsule endoscopy to get full picture
 

Lady Organic

Moderator
Staff member
From what I have read it sounds like 70-80% of Crohn's patients have it in their small bowel...if the scopes can't really see the small bowel why do they usually do those first?
The info you got is probably from lesions in the terminal ileum, which is the final section of the small intestine. This part can be reached and checked with a colonoscopy (which offers the very best views, along with the biopsies taken during the scope). The ileum of the small bowel is indeed very often involved in IBD.
 
MRI are necessary for detecting wall thickening, fistula and fat wrapping in crohn's disease. But they aren't a good diagnostic tool for crohn's disease, you can't for example easily differentiate if the wall thickness and thickening seen on an MRI is due to stenosis or actual inflammmation, MRI tells you a very limited story when it comes to diagnostic cues.

If you are able to get an MRI, that is great, the more information doctors have the better, but you can not avoid a colonoscopy, it is a much more important diagnostic tool.

There should also be ASCA tests and Omp-C antibody tests done for diagnostic purposes.

With a colonoscopy you can look for tissue inflammation, involvement of peyer's patches, granuloma, and important still, you can take biopsies. Biopsies allow you to rule out food borne infections and intestinal TB. Intestinal TB is rare in the Western world but it does happen and it can mimmick crohn's disease.

I would be much more afraid from a doctor who claims a colonoscopy is not necessary than the colonoscopy itself. You can not properly diagnose crohn's disease without colonoscopy.

Colonoscopies are generally painless nowadays, they use short term anesthetic that keep the patient in a sort of haze where they either fully fall asleep or are unaware of what is going on. It's not the same as a general anesthesia, you wake up from it quickly without needing much time to recover. The discomfort, if any, of a colonoscopy is really minimal compared to how they did it in the past, they are especially more mindful when people have crohn's disease.
 
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As I mentioned above he constantly has these mouth ulcers
Diseases where the primary immune system is involved generally feature oral manifestations at some point. The ileum, colon and oral cavities are where bacteria live, they all feature a mucus layer and rely on a host of immune processes to avoid bacteria entering tissue. Any macrophage function disorders will manifest themselves both in the mouth and lower intestines.

Chronic Granulomatous Disease, which is also a primary immunodeficiency disease that can closely resemble crohn's disease, has the exact same type of mouth ulcers found in crohn's patients.

Mouth ulcers generally reappear and disappear in both crohn's and CGD, without rhyme or reason, but they are more common early on.

They're not a diagnostic tool in either disease.
 
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