Question for parents of children with crohn's?

[shamrock15]

Good morning all. I am a 44 year old male with crohn's, and am interested in what prompted you to investigate your child for crohn's? My daughter (just turned 5) is complaining a little of stomach pain, and has had loose movements for about the last 10 days. Still only once or twice a day, so not an unusual frequency. No visible blood and she seems to be in good spirits otherwise. Has had a fairly low number of illnesses throughout childhood, larger than average height, generally good kid. I can't remember for myself how often in childhood a child's movements can go loose and when it becomes an issue to be looked into. Any input here would be appreciated. Thanks!

 

[Johnnysmom]

My son never had loose stools, he was always constipated.

The first thing that showed up for him was weight loss. It was very subtle. He was gaining about 12 pounds a year durning his yearly checkups. Then the year he turned nine he went from 97 pounds to 95 pounds. He was still gaining 3 inches a year in height and was in the 100 percentile so height was not effected. Then the next year he went from 95 pounds to 93 pounds and that year he only grew 2 inches (he always grew 3 inches per year my hubby and I are very tall). That was when his Dr. started testing. First bloods, normal but low protein. Then sweat test for cystic fibrosis, normal. Then we were sent to a pediatric endocrinologist. He ordered a bunch of tests but the stool test that showed protein in his stool was the one that got us sent to the pediatric GI. About a month before we saw the GI he was brought to the hospital for extreme abdominal pain and low grade fevers that would appear in the evening. (around 101)

He showed subtle symptoms years before anything showed up that the Dr's could put their finger on.

My advice would be to start by documenting your concerns with your daughter's pediatrician. The least invasive, easiest, and fairly inexpensive way to have them check for crohn's would be a stool test called a fecal calprotecin. Many Pediatricians are not aware of the test, and some pediatric GI's don't use it yet. It will measure the amount of inflammation in her digestive tract only and is far more sensitive than blood tests (CRP and SED rate) that measure inflammation. Anything >50 is normal. A severe flare can be in the 1000's. A child who is being treated with IBD is considered stable if the number is under 300.

Just to reassure you, just about every one of us has seen some "funky" symptoms in our non crohn's kids that we keep and eye on. (my daughter has mouth ulcers and tummy aches frequently) It has turned out to be nothing for most of us but we always watch and report.

Good luck and I hope your little one never has to experience crohn's!!

 

[Mehita]

Growth was the triggering issue with my son as well. In Kindergarten he was the biggest kid. By second grade he was the smallest. A bout of uncontrollable diarrhea in public is what got us a GI appt. His bloods were slightly off but not terrible. A colonoscopy and endoscopy determined he had both Crohn's and Celiac.

A simple suggestion would be to pick up a little pocket calendar and track possible symptoms. Over time, it will give you a good picture of trends. If she has 18 random days of diarrhea in one month, that would raise a flag.

Or, like Johnnysmom said, a fecal cal test is non-invasive and can provide some good info. You might have some trouble convincing a doc to order it though over just a couple of stomach aches and some days of loose stools. If I recall, it's not a cheap test either.

Good luck! I hope it's just a little stomach bug.

 

[Clash]

My son was older at the time of dx, 15 and loose stools weren't really a factor for him early on. His CD is located in his TI. His main complaint was mouth ulcers, night fevers and loss of appetite and fatigue.

I just wanted to mention I think the normal range for fecal calprotectin in regards to children your daughter's age is higher than the normal range for kids over 9. I'm on my mobile and can't post the link but if you google is I think it is more like 160 or something. Maybe MLP will be by as I think she once linked a paper about age and reference range for FC test.

I hope this is just a stomach bug and nothing too worrisome.

 

[shamrock15]

Good info so far, it is settling my mind somewhat. Guess I am just a little paranoid as she is close to the age when I suspect I had my first attack before it disappeared for a decade. Any others with differing symptoms?

 

[my little penguin]

DS was 5 in hind sight maybe younger.
He stopped gaining weight over two years age 5-7 then slowly started losing it.
Vague stomach aches on and off . He kept saying the word nervous
Since he didn't thought it was the same as nausea .
Ped thought he was just a skinny kid and all kids get stomach aches.
Blood work was normal
At age 7 rectal prolapse - so I took him to the Gi without a referral.
Tests for CF more normal blood.
Once he started to slowly lose weight that was documented ( many months).
We did supplement with kids boost during that time .
It helped him gain but after a while that was not enough.
Once he started to bleed mildly
( still constipation then D) he was scoped and dx with crohn's at age 7.

His growth stopped 6 months after dx.

 

[CrohnsKidMom]

Welcome Shamrock, My 8 yr old son was dx'd in March. In late Jan he had daily fevers which got worse at night, tremendous night sweats, was very fatigued, was getting mouth ulcers, had low appetite, and stomach pain when he did eat. No loose stools though, only constipation. In hind sight, the constipation was likely an indicator of Crohn's as he's always suffered from it. After more than a week of this, I took him to the dr, who ordered bloodwork. The bloodwork showed he was anemic and we were sent to the ER. More bloodwork and 2 days of tests and we had a working dx of Crohn's. 2 wks later scopes were done to confirm the dx. By this point, my son was really pale and was starting to lose weight. So, my son's symptoms came on quick, although there may have been little hints of Crohn's back into his toddlerhood, even though neither we nor the dr, picked up on it. Fortunately for us, the diagnosis was also quite quick. Best wishes to you. I hope your daughter stays well.

 

[Tesscorm]

My son was 16 when diagnosed. Possibly his first symptom was a back ache that would not go away after months and months. He had injured it and with hockey, we just assumed it wasn't getting the chance to heal properly. His ped recommended advils before every practice and game (he was on two teams, in hindsight, probably way too many advils ). At diagnosis, GI thought either the advils triggered his first flare or the backache was itself already a symptom of the intestinal inflammation. A couple of months before diagnosis, he started to lose weight, would have on and off again fever and diarrhea, canker sores, night sweats, fatigue, a bit of heartburn and some loss of appetite. Each occurrence seemed to last a bit longer and come a bit sooner. After numerous tests through our ped and a visit to a local emerg, we finally took him to Toronto's children's hospital and they tentatively diagnosed him within hours (confirmed by scopes).

I'm not sure if these were much earlier signs... at 4, 5, 6 years, his bottom would get really red and raw, we assumed he wasn't cleaning well as there were no other symptoms. At 7, 8 or 9, he would become constipated and would have quite a bit of pain; glycerin suppositories, however, worked within minutes and no other symptoms (he says now he remembers holding it because he'd be playing and would then become constipated??? For his entire life, he's always very much preferred a low residue diet... always assumed this was due to pickiness but, I wonder if it was simply his body responding to cues, ie high fibre was difficult to digest so he instinctively stayed away from it??

But, as was said above... kids without crohns get tummy aches, diarrhea, constipation, etc.... sometimes it's hard to be objective when crohns is so close to home.

I hope it's just a bug! :ghug:

 

[shamrock15]

@Tess - you son sounds a lot like me at that age. My weight loss came at a time was actually trying to lose some, so I thought I was successful!

Really good info here so far. Haven't noticed any weight issues or appetite loss for her, but I will start monitoring for any drops. She sometimes does get the red bottom. I appreciate all the feedback so far.

 

[Kaitlyn]

My older son had symptoms for a year before we really did anything my son was a football player and worked out a lot so we just figured that's why he was loosing so much weight he also would get sick every so often with stomach flu like symtoms. Also he just seemed tired all the time.
My other son would get really constipated all the time and also loss of appitite and wieght loss was a big thing

If this happens more often I would suggest mentioning it to here doctor also because she is at higher risk of having Crohn's giving you have it so it may be worth it to check into it. I wish y"all the best

 

[awmom]

My son was initially diagnosed with rheumatoid arthritis at age 10. He was put on NSAIDS on and off for 3-4 years. He also stopped growing when he was about 13 but we are a short family so the doc was not too concerned. It wasn't until he started having some blood in his stool that we were referred to the GI doc. In retrospect, he had many signs (growth, mouth ulcers, food intolerances, white stripes on his fingernails from low Zinc....) but we knew nothing of this disease and because he had no major GI symptoms. Actually, I take that back.....it wasn't until we got things a bit under control that he told me he would have a lot of pain before a BM movement...he never said anything to me because he thought it was normal.

 

[Maya142]

My daughter was also diagnosed with arthritis first - now Ankylosing Spondylitis. We thought all her stomach aches were from NSAIDs and assumed constipation was related to all the meds she was taking. She's always been very small so her size wasn't really a concern for us. However she did randomly become anemic twice - iron deficiency anemia and needed iron infusions. No doctor could explain why this was happening and we never saw any blood in her stool so we didn't do any tests. So I would say keep an eye out for any subtle symptoms, good luck!

 

[Brian'sMom]

My son was always small. Proportional...but small all over. I didn't think anything of this. When he was 5(almost 6) he had bronchitis and was on 2 different antibiotics. After that he had diarrhea on and off for 6 mos. We took him to doctor. He continued to have diarrhea for another 3...
He had colonoscopy and findings were not conclusive. His diarrhea cleared up after being on a gluten free diet. His growth remained on the small side. When he was 10 he got sick again and had diarrhea on and off for 4 mos. We did colonoscopy and it was clear diagnosis. (One thing I think back on now...when he was a toddler...everytime he got sick he had loose stools. And he was a fussy baby. Not sure if those 2 things were any precursors)

 

[upsetmom]

My daughter had no obvious symptoms when she was younger. Her growth and weight were normal.
She'd get occasional stomach pain but we never thought much of it.


Good luck with your little girl.

 

[Jmrogers4]

First year before diagnosis, stomach pains but was always easily explained away. The biggest flag for us when we knew something was wrong was seeing him next to his peers and where he had always been one of the tallest he was now the shortest along with weight loss and fatigue

 

[Stephyjane]

Ella was 9 when she was diagnosed, the year before she had some stomach pain and blood tests taken but everything was fine. A year later Ella had a nasty cold virus in the January and then started complaining of chest pain and stomach pain. Taken to gp and treated for a suspected virus with ibuprofen, still felt poorly so treated for constipation.Wasn't really eating, had very noticable weight loss, changed the gp we saw and she did bloodtests which had raised inflammatory markers and that really paved the way to diagnosis. The drs all the way through said don't worry Ella won't have IBD she is really healthy, very tall for her age etc. Ella had extensive Crohn's disease through her entire tract. It really is an invisible disease.

 

[ChampsMom]

My son was 13 at diagnoses. I thought he was battling a stomach virus that everyone was having, but his never went away. He was in the middle of his ice hockey season and always tends to lose weight during season anyways - so didn't think much of it... but then the cramping started and my Mum got a look at him and that was it. She saw what we couldn't see (watching him every day) significant weight loss. He was quickly diagnosed after that.

Good luck! I pray she is okay and this is just a moment for you to shine at being an aware parent!

 

[Farmwife]

Grace was abdominal pain and constipation.

 

[DustyKat]

Hey shamrock,

My children were not diagnosed until they were teenagers but their symptoms were as follows:

My daughter went undiagnosed for 18 months and until her symptoms escalated they were for the most part - upper abdominal/stomach pain, headaches (migraine) like and much of the time associated vomiting, sore eyes and knee pain. These symptoms tended to be cyclic, so they would appear all at once for a day or two and then disappear completely. These cycles started as about monthly, then became fortnightly, then weekly and finally were constant. In the last 6 months of this period she had also had weight loss and up until the time of diagnosis at 14.5 years she did not even look like she hitting puberty.

My son on the other hand was diagnosed very quickly and with next to no symptoms, Sarah's legacy no doubt!. In hindsight there were a couple of middling things in the previous 12 months, that being mouth ulcers and fatigue. However what led me to take him to the GP was one night of vomiting, followed by a few days of being off his food and then another night of vomiting. The symptoms really were very mild indeed and if Sarah didn't have Crohn's I wouldn't have given it a second thought. As it was I saw the GP and ask that he do inflammatory blood markers on him. His CRP was raised so they repeated the test a week later and they were further raised and the GP could also feel a mass in RLQ. He was scoped a week later and diagnosed.

Neither of mine had diarrhoea or blood as a symptom.

I wholeheartedly agree with tracking symptoms and getting a Faecal Calprotectin done if you feel the need is there. If you do decide to track have a look at this article in the Forum Wiki for ideas of what you may want to document:

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

Good luck!

Dusty. xxx

 

[shamrock15]

Well, this is actually a bit of a relief. Most symptoms that get mentioned are pretty much the same as when I was having problems before diagnosis. My daughter's weight has been really healthy, and she is at the 97% height range for her age. I really appreciate all of you contributing, and hope that your children do well.

Just curious - has anyone here noticed there child having asthmatic symptoms before their child was diagnosed? For me, about three years before the real fun started, I had my first asthma attack in the middle of the night. Two years later I was diagnosed with it formally. The reason I ask is since I have hit remission, my asthma has disappeared too.

 

[Farmwife]

YES! Grace wasn't dx with asthma until her BIG flare hit. She still gets attacks during illness though. My son is having "issues" (still in denial) and now I notice his coughing. I'm still not sure it's asthma though.

 

[DustyKat]

My son had Asthma when he was younger, started about 6/7 years old but was only an issue when playing sport in Winter and he grew out of it by his early teens. So well before his diagnosis.

My daughter has never had respiratory issues.

Dusty. xxx

 

[my little penguin]

Asthma here dx at age 2 .
Crohn's at age 7.
He still has both

 

[Johnnysmom]

Is asthma considered an auto-immune disease? There seems to be conflicting information on the internet.

My sister and nephew both have asthma. My son has never had any respiratory issues.

 

[my little penguin]

Asthma is not considered autoimmune
But those kids who are atopic ( asthma /allergies)
Tend to also develop autoimmune disorders per our allergist .

 

[Stephyjane]

Ella was described atopic so that's really interesting mlp.

 

[my little penguin]

Yeah DS is as atopic as they come - doc has him as severe( pollen, asthma , food and drug allergies ).

 

[ChampsMom]

My son was recently given an inhaler as he has experienced some exercised induced breathing issues (while doing suicides in ice hockey). Doctor said his lungs sounded clear, but his oxygen was just a wee bit low so she gave him an inhaler to see if it was just seasonal or something new...

Time will tell.. (*praying* for seasonal!!)

 

[awmom]

Yup, sorta. My son woul get terrible coughing fits and croup since he was tiny. Doc couldn't figure out if it was asthma but had to go on pred a couple of times. That has now disappeared also, as have his migraine headaches.

 

[shamrock15]

Not sure where I read it, but I can recall one theory that some "asthmas" were in fact caused by bowel bacteria instead of lung irritations. I think this was strengthened for me when my asthma disappeared with the crohn's symptoms. Just finding it interesting how many others seem to have the same issue.