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7 year old in pain not diagnosed

Undiagnosed 7 year old, any advice or can you relate??

Hi all, where do I start.
so last march my child came down with a virus well actually strep throat that turned to scarlet fever ( not confirmed by swabs just by rash and symptoms) at the a&e department as my childs temperature was very high he was vomitting and dioreah and wouldn't hold liquids down scarlet looking rash and sore throat. He was given antibiotics and he did recover however a week later I noticed him rushing to the toilet more and more complaining of constant nausea and by that I mean from the moment he woke to the moment he slept he would cry with how sick he felt.
This was accompanied by random bouts of vomitting stomach cramps and pain on the left colon side. My child is under a allergist already as they have a dust mite allergy and so my first go to was is this food thats not agreeing so they tested the usual culprits foods and did some bloods and told me he wasn't allergic however if it carried on I should see a pediatric gastroenterologist so in july they made a refferal. Unfortunately for my poor little man it did and the dioreah and sickness is still there untill this day his bloods came back with only high eosphinil at the time and then began the hospital trips admitted in august and September for suspected ibd they checked his mouth and daid he has ulcers on 2 occasions- the bloods they did said could indicate IBD and to wait for refferal as he cpuld cope with calpol and anti sickness.
Randomly he would just feel sick and not be sick then randomly every couple of weeks actual vomit or have severe left hand pain eventually childs a and e did some bloods and said they suspect ibd ( uc) over chrones because of some symptoms and bloods and where the pain was. so still we was waiting for the refferal he would have 2 maybe 4 weeks okay then it began again I tried Low fodmap and gluten free no change so then i tried fairy free after 2 weeks he stopped complaining of cramps and sickness and stools was more formed to a mush. The refferal was this April where he was given a barium meal swallow which was normal, all stool samples for inflamation and parasites normal.
However despite me thinking dairy free helped 6 weeks later its bacl again I asked what can I do he was given anti sickness untill the endoscopy and colonoscopy is due but we are still waiting.. I feel so helpless that some days he isn't managing school people assume its anxiety even in 6 weeks summer holidays and having fun it really dosent strike me as anxiety and he is well informed of who to talk to and where ro go for worries and has a very straight forward happy life, good friends, high school grades, always had 100% attendence untill this started,no sleep disturbances and the weekends it still occurs.I decided to stick to eliminating dairy even though he isn't allergic it seems to aggravate him further.


We are waiting on an endoscopy and colonoscopy but my question is if the barium meal and stools are normal is he likely to even have IBD.? Had anyone else had similar with young children.

His bloods are high crp.
High eosphinil count
Low red blood count
Low hemoglobin
Low haemotacrit
Low globulin
High creatinine
Partial thromboblast high

Now these was on 2 occasions in a and e.

Is this why they are suggesting possible IBD At a and e, the gastroenterologist said his bloods aren't too abnormal just slightly out except crp

I just want to add that when he was 3 he had hpylori with ulcers and noduling which he was in alot of pain with and was treated for confirmed by endoscopy he was givent anti biotivs and anti acids and never any problems again untill he was 6 Years old.. untill this began the only difference back then was bloods and atools was positive for hpylori.All stools and bloods are negative for this the gastroenterologist ordered his investigations because of that history to the check for inflamation but I really don't know if everything else has been normal except his bloods and examinations of left side are indicating the bowel. Im so confued as of what can be going on he has eaten dairy all his life also.

The results are only very slightly high or low except crp which was 73.

Please any suggestions of what I can do to help him why we wait he isn't a emergency they said but my poor little happy boy isn't happy at all.


So a bad day can look like:
He starts with pain cramps, says he feels sick has very loose stool, he cries and sometimes although not often vomits he has lost some weight over the past year as they have told me that despite eating regularly still. He has a reoccurring sore throat that gp calls throat infections.

Also when an endoscopy is done will samples check for bacterias or germs that could cause symptoms aswell as just looking for IBD? I HAVE A BUNCH OF QUESTIONS THAT I WILL OF COURSE ASK BUT IM HOPING SOMEONE OUT THERE HAS BEEN THROUGH SIMILAR.

FAMILY HISTORY I HAVE BILE ACID MALABSORPTION AND TAKE A BINDER DAILY

Thanks for reading X one very concerned mu
 

my little penguin

Moderator
Staff member
So few things my adult child now 20 was dx at age 7 with crohns
Around age 10 with juvenile arthritis and at 11 (i think) with sweets syndrome .
Weight loss in a child is a big red flag
They are growing gaining machines
Mine stopped gaining then had slow weight loss
He also had periodic vomiting
Once or twice every week or two until he was on een (formula only ) or steriods
And then even on maintenance meds (6-mp,methotrexate) still vomited until they put him on remicade at age 8.
Hasn’t vomited as part of crohns since

mouth ulcers are extra intestinal manifestations of Crohn’s disease- meaning if Crohn’s is active -you can see ulcers in the mouth as well .

Sore throats ,flu like symptoms. , mouth ulcers , hive like lesions on the skin that don’t move or go away , flushing , low grade fevers are all symptoms of sweets syndrome which can appear when Crohn’s is active or flare independent of crohns -my kiddo s is independent.

nausea ,belly aches , diarrhea are all parts of Crohn’s .

barium follow through was completely clean on my kiddo (first test they did ) and the radiologist was adamant that the one thing he could tell me was that my child did not have Crohn’s .
3 months later scopes (mostly clean) -biopsy confirmed Crohn’s and MRE showed thickening of the Terminal illeum .

so radiology was 😑 wrong

Allergy wise (very allergic kiddo here) the other thing they look for with high eosinophils and vomiting
Is eosinophilic disease (EoE,Ege,EC) ….
Gi was convince my kiddo had that prior to scopes
Again they were wrong …..

when are the scopes scheduled
Don’t pull anything unless told so by Gi
Reason pulling may fix somethings
But without a dx you can’t be sure
Other thing pulling things from diet in an allergic kiddo can sometimes cause sensitivities which develop into full blown food allergies
My kiddo is allergic to tree nuts and fish

but early on like you we pulled gluten ,did food maps , dairy free you name it
it did nothing most of the time .

good luck 🍀
 
Hi firstly thanks so much for taking the time to reply, I really appreciate it.
I did wonder if the barium was normal if they was going to try and tell me it's ibs now as the G.P initiallu said ibs .He also has slow weight loss that they've recorded along with the inflamation on bloods.. ita very behind where he should be his petite anyway. I think we have seen 5 or 6 pediatrician doctors in a and e where he was in so much pain and they have all Said that where he Is saying his tummy hurts plus symptoms and the bloods that it would have sujjested ibd to be confirmed by endoscopy and colonoscopy. However the stools are normal as was barium and now suddenly anxiety I'd being brought up. Of course he has anxiety his 7 and dosent understand and dosent want to run to the loo or be sick within school. Before he loved school for 3 years. This is such a shame. Also I didn't know that about elimination diet thankyou it was a and e doctor who sujjested to try this the pediatrician said he would need a dietician if he carried on dairy free but as you say even that isn't helping now. Some days or a week or 2 he can be fine then it comes straight back again. Other times its a mild build up untill his literally unable to attend school. He was booked in for June 7th after waiting all this time they called to cancel and said he needs a 8am surgery slot and not pm and none are avaliable as of today so its literally a waiting game.

A and e found ulcers in his mouth and throat on 2 occasions but when that G.i sore us there wasn't any so its a mystery at the moment I just really hope he gets some answers and get sorted. Sweets I've never heard of and that's exactly what my son looked like several times before Xmas and his throat and fevers come when the belly pain is there so that's something to bare in mind . Thankyou you have been so Informative and I'm so pleased to hear your young adult is on a recovery road and doing well , that's amazing. Best wishes
 

my little penguin

Moderator
Staff member
Take pictures of the ulcers in his mouth on your phone
Then you can show Gi
Makes sense these come and go
Fevers are common with crohns flares
Or other things including sweets
And crohns can wax /wane meaning get better than worse again .

scopes for little kids need to be first thing in the morning since unlike adults they can’t fast as long as adults can.

for school talk to his teachers
Get his seat moved to by the door
Get two card laminated
One blue (with his name on the front and nurse on the back )
One yellow (with his name on the front and bathroom) on the back
Work it out with the teachers so he can place the card on his desk and head to the nurse or bathroom if needed and the teacher will know where he is at without asking or waiting to go
Just put card with his name side up on his desk

he can keep a scrap of paper in the top left corner of his desk
He can mark the paper with crayon color coded
As tick marks for the number of bathroom times and if there was blood
Same as at home in the fridge
Colors
Slashes and give him the kids Bristol stool chart .
So he can track
Don’t ask about belly pain
there is a Lego man pain scale chart
Have that on the fridge so he can point and tell you how bad it hurts and where
Tens units can be given for belly pain to help while your wait for the scopes /meds to kick in
He can where it on the waist and at school
Under his shirt
Helps some

swimming helps some
Warm heating pads can help

dermatology can biopsy the mouth ulcers if they keep happening to tell if it’s crohns or sweets or something else
 
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