Tummy Pain, Hardly Eats, Slow Growth in 5 Yr Old

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tommysmum204

tommysmum204

Joined
May 8, 2015
Messages
17
Tummy Pain, Diarrhea,Hardly Eats, Slow Growth in 5 Yr Old

Hi all!! Will try to keep it short. I am mum to Miss 19, Mr 17 and Mr 5.
Brief history for Mr 5 (almost 6)
Recurrent mucousy-watery diarrhea since before 1 year old 2-3 days/wk
Alternating constipation and diarrhea between ages 2 and 3
Reactive Arthritis (spondy) diagnosed end of 2014
Uveitis diagnosed end of 2014...now in remission
Dry eye disease diagnosed June 2015
Still has joint stiffness daily upon waking
Oral ulcers and bleeding lips whenever sick
His growth has steadily slowed down since 3 years old. Was 50% height and weight at 3, he is now 1.2% height and 0.4% weight, at almost 6 years old he stands 40" tall and weighs 31pds.
He cannot tolerate normal portions of food at one sitting...1 tblspn of any food or 1 piece of bread or 100mls liquid is max before complaints of pain. He eats little and often. If he is ill he refuses all food and has gone up to 10 days eating nothing but will drink high cal shakes when hes refusing food. He has alot of tummy pain daily, I can ask at anytime and he will almost always say "yes tummys a bit sore" and several times daily for over a year he has pain bad enough he has to lay down for a while. He sleeps alot compared to his friends and still has naps most days, even while at school.
He has had 1 fecal cal stool test - normal but borderline high, and routine bloods -normal, however he is iron deficient and supplemented with liquid ferrous.
We are seeing the GI next week finally after being told time and time again it was "viral" or "normal" or lately "just related to his arthritis" and being told that his labs look perfect!! I am very much hoping for insight from the GI. Would be great if he could rule out IBD dream come true but if not it will be good to finally be on the path to healing so my boy can catch up with growing.
 
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Has he had a gastric emptying test? Gastroparesis (delayed gastric emptying) can make eating very hard. Typically children complain of nausea, pain and fullness after eating just a few bites.

My daughter has Ankylosing Spondylitis and IBD. She also has Gastroparesis and had a LOT of trouble with weight loss and eating. It's definitely worth seeing a GI and ruling IBD out, but I'd also look into Gastroparesis.
 
Maya142 no we have had nothing done in relation to gut function we've been flip flopped between Ped and GP and Rheum and all we get is shoulder shrugs and they say he is very tricky to pin a diagnosis on. They did a screen for celiacs which was negative. Even his lack of growth they were only mildly concerned about. Bloody frustrating!! beginning to wonder if intolerances cause the diarhhea issues he has? Some days his B/M's are normal he still has tummy pain though no matter what his bowels are doing. He does have urgency, and pain on passing motions and wiping bottom even when soft and normal. On his 2-3 days of loose motions/diarhhea complaints are generally the same :( leading up to the diarrhea days gas and alot of gassy "oopsa daisies" requiring underpants changes. He frequently has plum coloured formed stools, which was the 1 stool sample for fecal cal.
 
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Things that come to mind
Bechets
Eosinophilic disorders
Crohns
Immunodeficiency disorders often mimic crohns under the age of 5.
Gastroparesis

The problem is one kiddo can be complicated and have more than one thing going on
My kiddo has way too many things including
Crohns
Gastroparesis
Juvenile spondyloarthritis

Genetic testing can tell you if he has a monogenic mutation

Paging Malgrave her son was dx at age 2
 
Oh man! Tough spot you are in! Certainly the symptoms you describe could be IBD BUT as you are learning there is a lot of overlap with GI issues and it could be a number of other things.

A normal FC would be rather encouraging to me BUT keep in mind that variability in FC samples could be as high as 150 points. I would at a minimum retest in 6-8 weeks.

Celiac blood panels are not always 100% accurate. The gold standard is upper endoscopy with biopsy.

Has anyone mentioned a possible milk protein allergy?

Sorry you are having to go through all this. The pre dx phase is the hardest. Keep on Keeping on and just remember that each item crossed off the list brings you closer to an answer and help for you pumpkin!
 
Yeah, those docs should have referred you to GI long ago. Definitely major issues going on here. My daughter saw GI for diarrhea and failure to thrive at 18 months. Unfortunately they just did initial labs over and over throughout her childhood and didn't do scopes until she was 13.5 years in spite of her low weight and chronic diarrhea.
 
Hi ya - no ANA neg RF neg :) And they haven't looked at any allergies yet, I was told the GI will likely try to determine if any intolerances.
 
I have a daughter going through similar issues for 3 years. No diagnosis but she is Ana positive so dealing more with rheumatologist. Have you seen immunologist for ig workup?

Also on the slow growth... They did have some concerns at one point but was later told it wasn't due to lack of weight gain but severe drop in percentile. Was there ever a point at which he was higher in growth charts?
 
We've only seen rheum due to his "Reactive Arthritis" which they are now saying is probably not an accurate diagnosis because its not common in under 5's and he never presented with typical joint involvement. His hips, knees and feet are sometimes involved, however it is both hands initially affected with symmetrical involvement right down to individual fingers and they are to this day stiff and swollen every morning and after naps. He is on no medication at all because all they offered was ibuprofen, and it was rough on his already upset gut.
 
We saw her in October last year, will not see her till March this year, unless something drastic pops up. Son's joints are great on exam so shes confident that the transient daily arthritis is non-damaging and just something that he has to cope with.

And growth...age 3 he was between 25-50% height 10%weight, he has dropped through percentiles to now just above 1.2%height 1%weight
 
I would maybe ask ped if it is worth another visit to Rheumy to look at the whole picture again. All of this stuff is so interconnected. I really hope things calm down for him a little. It is awful when your kids have stuff that you can't fix with an ice pack or ibuprofen. My thoughts are with you...
 
I was also thinking that active arthritis can impact growth...I agree, it might be worth seeing the rheumatologist again and definitely the GI.

Rheumatologists say that hands are rarely involved in spondyloarthritis (including ReA) but I know several kids with various kinds of juvenile spondyloarthritis who have it. My younger daughter has hand involvement - stiffness and occasional swelling. Her rheumatologist says it's unusual but not unheard of. There is also another parent on this board whose son has extensive hand involvement.

Hips, knees and feet are VERY commonly involved in spondyloarthritis.

Would it be possible for you to get a second opinion?
 
Joints, mouth ulcers, uveitis, anemia and abdominal pain without clear labs to show why... All fall under multiple autoimmune disorders frequently treated or managed by rheumatologists. If they looked at only the joints it definitely is worth showing them the whole package. Any rashes or low grade recurrent fevers?
 
Low grade fevers occasionally. No to a 2nd Rheum opinion, in NZ we are stuck with public health and despite us having very good health insurance we are very very limited to private specialists. Luckily there are 2 Private Gastro's available so i asked around to get best recommendations, his Rheum is keenly awaiting Gastro input because she is out of ideas. The only thing all his Drs agree upon is that he has an inflammatory process going on, and until it presents its ugly head there is nothing they can do. His rheum has been seeing him since the arthritis got him hospitalised, she has seen him through the uveitis, the fevers were bad in the beginning - they queried SJIA until he got uveitis....then she dismissed SJIA due to how rare it is for SJIA. When he was in hospital that was one of his longest fasts, and worst diarrhea and worst labs but they only tested his diarrhea for infectious causes, which were negative. He has had no imaging done to rule out joint inflammation or damage, he has not even been tested for allergies, kind of hanging on by a thread they frustrate the hell outta me!! "Everythings normal", "his blood work is normal" then why in the hell are my friends 3 year olds growing faster than him? They need to look away from the numbers and look at my gaunt wee boy with big black rings under his eyes and see something aint right here.
 
Definitely worth seeing GI - I REALLY hope they have some answers for you.

That's not a great reason to rule out SJIA...kids do have it! Yes, it's rare but that doesn't mean NO one has it. High fevers are common with SJIA - low grade fevers are more common with other kinds of JIA. There is also a rash that comes and goes with SJIA. It would also probably be pretty evident in the bloodwork - typically kids have a high ferritin and a very high ESR and CRP.

With spondyloarthritis, ESR and CRP may or may not be elevated. ANA and RF factors are almost always negative. The only thing that may be positive is HLA B27 - which is a gene. Has he been tested for that?

We got my daughter mittens that can be heated in the microwave for her hands. We used this site but perhaps you can find some equivalent over there:http://www.snuggables.net/warming-mittens

You can also get a microwaveable stuffed toy - they help for belly pain and for joint pain:http://www.snuggables.net/plush-stuffed-animals

We use a lot of heat and ice. For hands, some people use paraffin. Physical therapy or occupational therapy might also help.

Generally when reactive arthritis is chronic and doesn't resolve, it is treated just like other types of spondyloarthritis - with NSAIDs, Anti-TNFs and possible Sulfasalazine or Methotrexate. I guess they're waiting for the next big flare to see what's going on. The whole "let's wait and see" is so hard - hang in there.

I hope the GI has some answers - fingers and toes crossed for you!
 
Wow
You have my kid
Hands both of the including all his fingers are stiff every single day
His hips knees heels and neck sometimes join the party as well.
He is dx with juvenile spondyloarthritis associated with Crohn's disease
His JSpA runs independent of his Gi flares
Things that help him daily paraffin wax on his hands
Resting hand splints to sleep in ( really help the fingers)
Swimming for his other joints
Therapy clay or putty /Legos to work in hand strength
Playing a string instrument to work on hand /finger strength

His esr and crp are normal almost all the time
But he still requires humira and Mtx to keep his JSpA under control

I would ask the Rheumo sprcfically about JSpA since it can cause Gi distress as well
 
welcome to the forum. I am so sorry your little guy is going through so much. I would ask the GI to do scopes on him especially since he is one of those kids like a lot of ours here whose blood tests look great even though they are so sick.
I would also ask for a referral to an immunologist. Unfortuantely many kids that present with so many symptoms at such a young age may really have an immune disorder behind all these presenting symptoms. Please keep us posted how the appt goes.
 
UPDATE...1st appointment went well, Dr showed immediate concern for our son's health. He was astonished at his growth and was stunned he has not been monitored more closely for his health and growth issues because he said its immediately obvious he is failing to thrive and most definitely it is all related to chronic inflammatory disease, now has got the ball rolling to determine if it is IBD, though after seeing our poo pic collage he pointed out the red poops and said those are indicative of IBD for sure, and is pushing for urgent scopes and if that is inconclusive he will do a MRI to check small intestine. Finally on a path forwards :)
 
Big hugs
So glad someone listened and you have a plan for testing .
Fingers crossed for quick scopes
 
Wonderful news that you have someone who is doing something! Isn't it amazing how much better things are when we just have a plan of action?
 
Glad someone listened!! Hope you get some answers and scopes go smoothly.
 
Hello, I do not know where to start or if this is the place. My son is 18 months old and is undiagnosed. started with mucousy diarrhea last october then bloody loose stools and bloating, tummy pains, the tummy pains went away but he still has bloody stools. He normally passes stool once a days, and its either formed or mushy but not runny. He had a upper and lower GI last week, and they had to stop since he had inflammation in his transverse colon and it began to bleed a bit. hes had two calprotectin tests and both 1600s. he is scheduled to have an MRE next week to see how inflammed the colon is where doctor couldnt see. He has a huge appetite, full of energy and where he should be in growth. But everything is pointing to crohns. My thing is I prefer not to "drug" him and look at a more non-conventional approach, like diet, holistic measures. does anyone have any advice. there is not much study of effects of drugs in toddlers, especially long term. of course doctors never agree with not giving drugs since thats the way they are taught. I actually eliminated all dairy since a month ago and hes seems better but the bloody stools are still there, not alot but specks. and hes also anemic, hemoglobin is at 9.8. I would appreciate any info since Ive never even heard of this disease and my other two children have been always healthy. Thank you
 
IC7997, get your diagnosis first, then face treatment. There are nutritional therapies that work for some for IBD, but they are hard to sustain. Little ones tend to have more aggressive disease unfortunately. I'm sure they'll watch him closely no matter what to make sure whatever they do is for his best.
 
UPDATE...We have scopes booked for 2 and a half weeks.....ughhh. Quietly looking forward to answers and quietly hiding my head in the ground not wanting the answers :)
 
Tommysmum - glad to hear the docs are helping and being proactive, since a GI opinion would be critical from what you describe. Since you are in NZ, you may want to reach out to John Aitken in Christchurch at Otakaro Pathways. He's testing private Crohn's samples for a pathogen he's investigating as a possible trigger for Crohn's. He has helped me immensely, and is a kind, intelligent researcher. Plus, he's well connected in the GI community. I believe his company website has a contact page. Wishing you and your son only the best, and swift, full healing.
 

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