When was your child diagnosed and what led to it?

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sassym

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Jun 21, 2013
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Hi everyone!
I was diagnosed with CD in 2010 a few months after the birth of my first son. Now I'm pretty familiar with my disease, but I'm becoming more concerned about my son. I've spoken a little bit about it to my doctors when we go but no one seems to take me seriously at all. I do not want to put my four year old through a scope or anything like that! I just want to know what things they look for in children that make them start looking more closely?
The things that worry me are small, but I can't help but think that if we knew about it early on, maybe we could slow the progression. Here are the "symptoms" I've been noticing; every once in awhile he will loose control of his bowels, almost like had no idea he had to go until it was too late. Then, sometimes when he's having a bowel movement he will cry and say his belly hurts and feels hot. These were the two symptoms that led to my diagnosis, along with a rash on my hind end that he seems to be developing as well. I don't want to worry over nothing, but I don't want to ignore anything either.
What were some of your experiences with IBD in kids? Do you think I should look into this more?
 
:ghug:...It would be hard not to worry when you have crohn's.

My daughter had no obvious symptoms till she turned 13. Then one day she got what we thought was a stomach bug, but it never went away. It took a year before she was diagnosed.

I hope your worrying turns out to be nothing.
 
We didn't have any outward symptoms except poor weight gain. I hope your worry is over nothing but given your history, I would follow up with the dr. Perhaps a less invasive test like blood tests or a stool test would put your mind at ease.
 
Given your history, very frustrating when doctors brush it off! :ghug: There would certainly be no harm done in following up with some testing. Be sure to monitor his growth and weight as failure to thrive is often an early sign with children. Also, in additional to blood tests, ask for a fecal calprotectin - a non-invasive stool test that will indicate intestinal inflammation.

But, I hope you are also worrying for nothing! :ghug:
 
You can always see a pediatric Gi .
They don't have to scope but can talk to figure out what might be going on.
A lot of things overlap in the land of Gi - so your little one may have something completely different.
Good luck
 
My 13 year old son started losing weight, became anemic and had a fever for a month which all led to a quick diagnosis. I hope your worrying is nothing but I agree the earlier the diagnosis the better with this disease.
 
My son was diagnosed in June at age 11. He suffered from fevers which went from weekly to daily and substantial weight loss. As the others said, blood tests are not invasive and they can check for inflammation (sed rate and CRP), or deficiencies (like iron). Stool tests for calprotection could also show inflammation, which could be indicative of Crohns. Keep a food diary in case there is some kind of food allergy or intolerance. You know your child best so follow your instincts. If one doctor won't pursue, try another. Good luck!
 
My son was diagnosed age 12. He had a year and a half of really sore tummies that came and went. He was fine in between. The only test that showed anything is the faecal calprotectin. It might be worth checking that for your son - at least it's an easy test.
 
Thank you all for your advice! I'm glad to know there are some non-invasive things we can do to see what's going on inside his little tummy. I was diagnosed by biopsy so I didn't know what other options were out there.
 
Welcome to the forum. My son was dx'd last yr at age 8 after having had a flu. The GI nurse said the flu was likely the tipping point that triggered the Crohn's. When I think back, I believe he had signs of Crohn's when he was 2-3 yrs old. He was out of diapers, but would still get diaper-like rashes. He was also frequently constipated. At the time of his dx, he had those same symptoms, but was also very sick, anemic, was starting to lose weight, had pain around his belly button which increased after eating, and was fatigued and having daily fevers, night sweats, and frequent urination during the night. Fortunately, we had a quick dx, and he is doing much better now. I hope this helps, and your little one remains Crohn's-free.
 
Did any of you notice any atypical symptoms like mood swings or a tendency toward being overly sensitive? I don't think it's related but it's worth asking. I'm trying to help my son learn to manage stress as best he can because that was what triggered the disease for me; but I'm not having much luck in that department. Every. Little. Thing. Is the end of the world. And when he cries it's more like wailing than crying. Anyone have any advice for teaching a four year old how to deal with frustration?
 
I haven't noticed any mood swings or emotional issues. My son with Crohn's is pretty level-headed. My younger, nonIBDer, son is the dramatic one. So I don't think there's any emotional connection in our case. My younger son is a momma's boy and cried a lot when he was your son's age. He just grew out of it. He still likes to put on a show though! I hope you get things sorted out and your little guy remains well.
 
The behavior sounds like a typical 4 year old .
For most kids everything is about them
And the end of the world .
Stress does not cause crohn's in kids .
 
My dd gp want to dx her with a stress related illness at 12 but offered a blood test. The blood show very low iron levels without anemia.

This led to our 4 year search which end with a crohn dx aged 16.
 
After my son had bronchitis and went on an antibiotic when he was 5 1/2 yrs... it was followed by diarrhea for 9 mos. (After a few months of it we had tests done for C Diff... then the diarrhea just kept up and we were sent to GI. He had a colonoscopy at age 6). Some symptoms were slow growth and the diarrhea. He also had times he couldn't hold it and had an accident in his pants. I kinda think that had to do with his young age. Before my son was diagnosed and before the diarrhea ever started, he would often have loose stools when he caught a cold, etc. One thing I want to mention about the mood issue... We had nicknamed him "little man" and not really due to his size. It was because he was a fussy baby and a bossy toddler. And often grouchy. Not always a "happy go lucky" little kid. Looking back now I've often wondered if he was in some pain and didn't know how to convey that. Or if he even knew that he shouldn't be in pain. Hard to say...
 
My son had an abscess at age 8 that wouldn't heal after draining. Surgery showed a fistula so we followed up with the pediatric GI. Bloodwork indicated he was low end of normal with high sed rate. Then we scoped and got dx. In hindsight, there were other indications but we hadn't put things together, such as lack of growth, paleness and fatigue. He never had tummy pain and had regular bms. We didn't have an IBD family connection, so had no idea to expect it. I would ask his pediatrician to do quick bloodwork. Hope it all works out ok.
 
Grace is five now but dx at three.
She was always colicy and painful cramps. Then came joint pains, lack of growth, plus skin and poo problems.
You've gotten good advice. Keep pushing if you know something's wrong.:hug:
 
My son was diagnosed at age 7 in October 2013. His symptoms were: lack of growth (he was 3% for weight and 25% for height when previously he had been 90% for height and 50% for weight), loose stools, and rectal prolapse (tho I'm not sure the RP is related to Crohns Disease.) Pediatrician sent us to Pediatric GI and he had an endoscopy/colonoscopy and was diagnosed with inflammation in large intestine, small intestine, and ulcers in his stomach. He was put on Pentasa, Prednisolone, and Prevacid. We later added Azathioprine. He had another endoscopy/colonoscopy a few weeks ago, which showed much improvement since the first one, but he still has inflammation and narrowing in his ileocecal valve, a few ulcers in his stomach, and a small amount of inflammation in his small intestine. His therapeutic levels were good for Azathioprine, so last week we started Remicade. The plan is to do Remicade and Azathioprine for five months, then drop Azathioprine. *fingers crossed*
 
DS was dx at age 7.
He has had Gi issues on and off since birth.
By age 5 -7 he stopped gaining weight .
At age 7 rectal prolapse , stomach pain , constantly feeling like he needed to go but nothing to show for it , constipation despite miralax.
Slow weight loss every time kids boast supplements were reduced or removed -eventually those didn't even stop the weight loss-
Finally rectal prolapse that was bleeding and bloody stool from inflammation which led to a scope -sept 2011.
Scope looked normal but biopsies showed inflammation and granulomas consistent with crohn's in his stomach, TI, cecum, sigmoid colon and rectum.

He currently takes humira and Mtx after many other drugs .
 
For us the symptoms were mainly severe constipation, which obviously led to really bad stomach pains. He also had open sores over his mouth and ulcers inside his cheeks. He did have a fistula but didn't realise this until diagnoses
He did have a lot of mood swings, but I put this down to being constipated. I will say now, one of the first thing I notice if Josh is starting a flare is his mood swings, he gets very quiet and very, very miserable.
Josh was finally diagnosed aged 8 after being continually dismissed by doctors as me over reacting to the symptoms. You are the one person that knows your child inside out, so if you feel there could be a problem it is worth pushing to him checked out.
 
Hi,
I second the vote for fecal calprotectin. For my son, it is the only test that shows anything. My son is 5 now, but was diagnosed at 2 after being scoped. After 8-10 months of mucous and blood in his stools he was finally hospitalized so they could run all the tests they needed to rule out other disorders. No family history of IBD on either side. His symptoms began after a bout of Hand Foot and Mouth virus; previously he had shown no symptoms. He was a bit colicky as an infant, but as he was my first, it just seemed normal, and he seemed to outgrow it
My son is also very moody and sensitive, I have at times wondered if it were related to not feeling well, and it certainly was more pronounced when he was 4! But I know other kids without IBD who have similar a temperament.
 
If he is staying on the growth charts then there's a chance he has CD but not a very big one, in my opinion. That's not to say he may not have some GI issues just that full blown CD usually causes some delay or stopping of normal growth.

I would keep a diary or record of these issues to help when you go to see your pediatrician or GP. It's much easier for everyone if you can quantify the problem. See he's having pain with BM's 3 times a week or whatever.

Ask for a dermatology referral about the rash if it's persistent and unexplained.

If he has any perianal disease - fissures or skin tags - then my suspicion for CD would go up a lot so keep an eye out for those.
 
Oh and be sure they are checking his height and weight ACCURATELY at the pediatrician's office. They are often very casual about the height especially and a lot of medical decisions about children are based on their growth pattern. If necessary have them measure his height 3 times and take the average if he is really squirmy or doesn't stand up straight. If the staff fusses just tell them he may have growth issues and it's important to get it right.
 
My daughter was diagnosed at age 14 after having tummy infection, that we believed was due to drinking nasty water after the water pipes broke at her school. Several courses of antibiotics,loose stools, normal blood tests, no blood on stools. several doctors, loosing a lot of weight was finally dx by colonoscopy and endoscopy after six months.
 
Patricia56 said:
Oh and be sure they are checking his height and weight ACCURATELY at the pediatrician's office. They are often very casual about the height especially and a lot of medical decisions about children are based on their growth pattern. If necessary have them measure his height 3 times and take the average if he is really squirmy or doesn't stand up straight. If the staff fusses just tell them he may have growth issues and it's important to get it right.
Click to expand...

Once at a monthly GI visit my son "Lost a few centimeters"! The GI smiled and said, he shrunk! I remembered that the lady put the thing down hard on his head and he naturally went down a bit. After that I paid attention to it better also :)
 
Just to chime in on the mood swings... my daughter was always a sweet fun loving girl before diagnosis. She still is, but the meds +teen years have made her mood swing dramatically. There was no tie to her mood swings and onset of crohns. The FCP test is a great way of getting more info without the colonoscopy. I 3rd the motion. It will help put your mind at ease to know if you can relax a bit or start more involved testing. Good luck.
 
With my daughter, who was diagnosed at 13, she had daily fever, weight loss, and stomach aches. Pediatrician kept saying "probably a virus" but we insisted on bloodwork, which showed anemia and inflammation. Pediatric GI said "probably Crohn's, let's do an endoscopy" which we were very skeptical about, but she was right!

We had always thought that diarrhea was one of the classic symptoms, but she never had that.

I agree with others that there would be no harm in getting bloodwork and a fecal calprotectin test done -- even yearly, given your family history.
 

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