Crohn's Disease Forum » Parents of Kids with IBD » Hubby thinks middle daughter has crohns

03-19-2015, 04:51 PM   #1
Join Date: Dec 2013
Hubby thinks middle daughter has crohns

My middle child has just turned 4. She's had.gastro issues her whole life. Explosive diapers, we are talking head to toe every time. They got worse, she became horrifically constipated, so we cut out gluten as her sis was gluten intolerant and it made a difference, but her tummy was not 100%. She's always had long term and short term bouts of hoarseness, we've always joked she sounds more like a boy than her boy cousin!
She has only slept all night twice in her whole life, she wakes up multiple times screaming acting like when my eldest had colic, the whole back arching and curling up in a ball act.
We found out by accident she was severely anemic when they took blood after she developed cellulitis after her 18 month shots. Her iron was 3 range 4-25. Ped gave her iron supplements, took3 months to get to 8 a year to get to where he wanted (12). But her iron dropped to 8 a few months later.
She hardly eats, she's slowed down in growth. Complains of stomach aches, on the left side, below belly button, says sometimes it hurts to swallow. Whe she's really bad she sores so loud. She also complains of joint pain and gets rashes all the time.

We have a great ped so far she's seen
OT, no developmental issues, says it's a medical issue
GI, original GI ( called Guttman lol) ordered upper GI with biopsies
- celiac negative
-EoE negative
Only issue was redness in duodenum which they could give no explanation for
Reflux meds, ppi, no help made her scream day and night
ENT said hoarseness not her tonsils, gastro related.
Tested for lupus, checked for hpylori giardis etc negative,no blood bus pus or ova
CF testing negative, no inflammation or infection
Rheumy fellow wanted IBD team to have a crack at her, her boss walked in and nixed the idea.
So our diagnoses are
Sore throat - she needs to learn to whisper
Tummy - she's constipates, was on miralax, but now we've had to stop it as she now has uncontrollable diahrea with oil and foam. We gave for a week in case she was just backed up, but it made her pass pure water so def not! Pain is apparently Functional abdominal pain, everything else gastro related repeated tummy bugs, I have 2 other kids, and my hubby is on remicade for his crohns, no one else is sick
Rheumy Sid she's anemic because she doesn't eat enough, if I feed her more she won't be anemic and she'll grow more, would you be able to eat feeling so lousy?
Rashes repeated viral rashes.
My hubby wants me to take her back to the ped, but she's had the million dollar work up and we've been discreetly advised our files are flagged, we can't take her back to the hospital, but probably her ped he's awesome. He said family services won't get involved, but docs at hospital insist she 100%. Healthy and this is normal. As it's spring break my teacher hubby has time off and has seen first hand the disabling nature of her pain, the diahrea, the constant crying and he wants it fixed. But we have no avenues left. We are in British Columbia canada, so covered by provincial medical, can't afford to go private.
We do t know what to do. Take her to hospital next time she screaming and risk A) a repeat of our last visit for bad pain and be hiven tylenol and asked why we are even there or B) social services visitin, they take kids first, ask questions later
Or just leave her and pretend docs are right
03-19-2015, 05:28 PM   #2
Jmrogers4's Avatar
Keep a dairy of symptoms so you have something concrete to go on. Can you request a fecal calprotectin from GI/Ped if one has not been done. If it shows inflammation maybe they would be willing do do colonscopy. Saw she had upper but not lower, correct?
When my son pretty much quit eating prior to diagnosis, they went straight to testing for crohn's when labs came back showing inflammation based on the fact his father has crohn's as well. Colonoscopy was scheduled right away.
I'm sure others familiar with Canadian healthcare will chime in soon. Paging supportivemom, tesscorm.
Paging Farmwife she has a girl close to your daughters age and had quite a journey to diagnosis.

Mom to Jack (18) dx Crohn's 2/2010
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
03-19-2015, 06:14 PM   #3
Join Date: Dec 2013
Our biggest hurdle is the GI we saw, he says she can't have crohns as she is female young and half chinese, the fact her chinese dad has crohns according to him is a million to one chance. The man is an idiot, my eldest had whole bunch of issues, celiac was questioned, he said no celiac gives you diahrea not constipation, we ignored him, ditched gluten in her diet, LO and behold skin issues hone, constipation 75% fixed! she grew 3 inches and put on 4 lbs in 3 months, she went from a 7/12 shoe to 9 in 10 days!!
Spoke to ped secretary, have become good friends with her, on the sly she informed me all avenues are closed to us, not ped doing, but hospital, if they see any other test being ordered( have to be done through local kids hospital) then family services will be investigating, we could lose our kids. This sucks, she's sick, and we are being punished for wanting to help her
03-19-2015, 06:45 PM   #4
my little penguin
Forum Monitor
Join Date: Apr 2012

My Support Groups:
Are you close to sick kids hospital ???
I know Tesscom had to head to the Er there

Have you tried supplmental shakes ?
Pediasure or kids boost ?
Many GI issues are fixed by formula only EEN diets 90%/10-20% food.
Also many GI issues overlap which is a problem
Sorry you don't have answers
DS started with GI issues at 13 days old
He was finally dx at age 7.
We went down the allergy avenue first
Then upper scope for EoE /celiac -nada was found at age 6
Waited for another year ( too many tests etc)
You can be gluten intolerant but not have celiac
You can also have food intolerance but not have Ibd

Have you kept a food diary of what she eats how much and symptoms plus bristol chart of stools timing etc...
Pictures of kiddo some times help
Have you tried warm baths / warm buddies is a teddy bear with a hot pack that helps sore stomachs etc...
DS - -Crohn's -Stelara -mtx
03-19-2015, 06:46 PM   #5
Catherine's Avatar
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
LauraJ, how is your husband relationship with his specialist? Can you ask them for advise?
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
03-19-2015, 06:46 PM   #6
my little penguin
Forum Monitor
Join Date: Apr 2012

My Support Groups:

Warm buddy link
03-19-2015, 07:14 PM   #7
Forum Monitor
Farmwife's Avatar
Join Date: Apr 2012
Location: Michigan

My Support Groups:
LauraJ, I tell you, I could have written your post a couple years ago.
We never had the threat of losing our kids thro.

The pain at night...............have you tried giving her gas-x (gas drops)?
This worked a bit but not fully.

Also could you see a therapist as a FAMILY and have him or her write a letter that states that your not trying to get attention by your daughter sickness? Have them put it in her medical file. Hopefully this might hold off any investigation.

Also look into EGID's. It's GI diseases that has a lot to do with allergies.

It can take years for this disease to take hold but it doesn't mean your kid should EVER have to suffer like this.

I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
dx Juvenile Arthritis
dx Erthema Nodosum
Bladder and Bowel Dysfunction
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
03-19-2015, 07:46 PM   #8
Join Date: Dec 2013
Insurance and provincial won't cover anything except in BC and Alberta , and insurance won't cover therapy.
My husband specialist is rather " special! At his last appointment he ate his luch the whole time my hubby was there, it was so funny. I guess I can get him to talk to him, but as he's an adult GI I don't think there's much he can do. My hubby has been labelled as a trouble maker, he had a resection at the urging of his specialist as he kept getting obstructions. The resection became obstructed. It didn't clear after a month so the retried the resection and he ended up with a duodenal ostomy, they told him he'd have to stay in hospital for 6 months on TPN then they would redo the redo, then another 6 months of at home TPN afetr training then reverse his ostomy. He kicked up a huge fuss, asked for a 2nd 3 rd and 4 th opinion from surgeons, then complained to the patient advocate that he wasn't getting continuity of care as all he was seeing were med students who had no idea what they were getting into and that all the docs seemed to be on different pages, in one day he had 13 different plans of action from the students, none carried out. He kicked up such a fuss they called the surgeon who did his gallbladder a few years ago, who agreed with us, not all the opinions of the other docs that if they tried to redo the redo the same thing would happen again. The next day he had his first dose of remicade, 3 weeks later was home ostomy free, 1 yr later all is well.
Our baby has something called food protein induced enterocolitis syndrome, thankfully our allergist has a brain, listened to us that something was wrong, looked at our notes we'd kept, visit took 5 minutes
We see her in may for my middle, hopefully she can order some tests,she's also an immunologist we've seen her for all 3 kids. She's still pixxed that the GI fid t diagnose my eldest with ce.iac on symptoms alone, she said if she realized he was going to be so black and white about it she would have done it to save us months of useless visits
03-20-2015, 11:33 AM   #9
Tesscorm's Avatar
Join Date: Jun 2011
Location: Ontario

My Support Groups:
Wow, I'm sorry you're having such a tough time with a diagnosis. But, as was said, it does sometimes take time before a diagnosis is made.

I don't have many more suggestions other than what has been said... ie symptom diary or trying to speak with your husband's GI (he may not take kids but may be able to suggest a colleague). I'll also tag Twiggy... I believe she's from the same area and may be able to suggest something (she hasn't been on for quite a while but may see the 'tag').

I'd also suggest trying to supplement her diet with nutritional shakes... at least until you get some sort of diagnosis.
Tess, mom to S
Diagnosed May 2011

May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
03-20-2015, 03:32 PM   #10
Senior Member
Crohns08's Avatar
Join Date: Sep 2008
Location: Florida
Sorry to hear what you're going through. If i were you I would try to control it as much as you can with diet. Bowel rest and doing liquid diets can be extremely helpful when solid food can't be tolerated and is only causing pain. Keeping a food diary is great as others have suggested.
Toni, Diagnosed in September '08
Specific Carbohydrate diet
Currently on:
Vitamin D
SCD Multivitamin
09/2011 - Draining an Abcess the size of a lemon!
10/2011 - Same abcess, different approach this time, open incision!

Add Me on Facebook!
03-21-2015, 02:53 PM   #11
Forum Monitor
SupportiveMom's Avatar
Join Date: Mar 2013
Location: Toronto, Ontario

My Support Groups:
If the tests are coming back 'normal' it is hard because there isn't a lot a doc can do to move forward.

Keep a journal, how many times your daughter goes the bathroom, consistency of stool, and if any blood becomes present. Also notice if your daughter doesn't gain weight or loses weight over a period of time. My daughter was 1st diagnosed with a bad stomach flu that kept coming back, or couldn't fight off until the GP realized she started to get worse very quickly & sent us to SickKids Hospital in Toronto. It took a while to go through the process of getting a GI (2 months thanks to the summer and doctor vacations!) and by that point she was very bad. I would never want to see a parent go through that with their kid, but it can be the negative side of socialized health care, having to wait for a specialist.

If you see a change, or a pattern that could indicate IBD from journaling, I would take my kid to BC children's hospital. I know SickKids has worked with them and I know treat plenty of IBD patients. I hear you about being worried about being flagged for advocating for your kid. It is nerve wracking, but sometimes you have to trust your parental gut and push forward.

Has your husband or you heard of the GEM project? I would suggest getting enrolled if you can. At least from a genome perspective it would be highly valuable. I signed up my two kids. So far my other daughter hasn't developed IBD, but recently showed some signs. The more they have the better understanding we will have of the genetic component.
Mom of 16 yr. girl w/Indeter.Colitis Sep. 2012(age 11) Nov.2012 Crohn's Sep. 2014 Crohn's Colitis, UC Nov 2015, Crohn's Feb. 2016

Ileostomy surgery July 2015

Current Meds: None!
Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone ☆
03-21-2015, 03:25 PM   #12
Lady Organic
Forum Monitor
Lady Organic's Avatar
the GI we saw, he says she can't have crohns as she is female young and half chinese, the fact her chinese dad has crohns according to him is a million to one chance.
I Strongly suggest you change GI. This statement is beyond ridicule and reflect such a passive attitude towards medecine and patients. Crohn's is a worldwide disease and immigrants coming to America come to have similar incidence of IBD as Americans. Children of parents who have IBD are at greater risks of having IBD. This is well known. Im sorry you have to go through this. Isn't there another children hospital in your area? You definately need a second GI opinion. There must be such hospitals in Vancouver?
''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).

Last edited by Lady Organic; 03-21-2015 at 03:59 PM.
02-12-2016, 03:06 PM   #13
Join Date: Dec 2013
Thought I'd update, it's been a while. Well, m had s month of watery green poop, nice new doc ordered cultures, salmonella, not sure where the hell she got that( this was just after last post) .
Issues still ongoing though. Salmonella was confirmed as gone through stool tests.
Our clinic had changes in staff due to funding changes, which means lots of different docs, nurse leaving and coming back. But it's turned out to be a good thing.
We've left the gi issues alone , taken her only to doc when she was super hoarse for weeks. Then her feet turned yellow. Do we took her in, she was checked for Hepatitis , full Cbc, and stools for blood, bugs and eggs. Her liver panel was off, do they redid it, and it was low. She'd been soiling herself, she'd dart then run off and her underwear would be full of green/ yellow mucus. She's just had a bout of bad throat and bad tummy.
Nurse is not happy she's in pain but no one is doing anything. She read up on everything that happened in the year or so she'd been gone. And we got to see a nice new doc as our awesome doctor retired.
Questions asked by both - has she been tested for cystic fibrosis ( yep newborn screening was inconclusive so had genetic testing and sweat test - negative) and Celiac disease ( Yelp blood and biopsies negative but is gluten free as it stops her bring consolidated and keeps her gluten intolerant big sister safe).
New doc asked if we knew what IBD was, told him her dad has crohns and that it had been raised in the past, but we and the rhumetology fellow we dismissed. Now we have a new doc and nurse in our corner. Nurse wants us back to ped, we've left things alone, nothing has resolved and new things keep cropping up, she'd very annoyed that a limited girls has been left by hospital to be in pain, and says her previous anemia and the fact that things seem to cycle , then throw in yellow feet and now petechia , her body isn't happy with something. We go for follow up on Wednesday ( clinics computer system crashed, perfect timing!)
02-12-2016, 03:37 PM   #14
chata's Avatar
Join Date: Jan 2012
Location: California
Gosh, I'm glad you came back to this thread! It's incredible to me that no one did a colonoscopy on her, yet did an upper GI exam. The doc who said Chinese people who get CD are "one in a million" must be nuts. Females get it; children get it; and assuredly, Chinese people get it. Dear lord.

I was getting repeated blood transfusions, about two pints every three to four weeks, for several months before my colonoscopy showed Crohn's. A child who isn't injured or menstruating should never have a low RBC or HGB count, particularly if she's nutritionally sound. Internal bleeding is the first suspect when iron sulfate supplements don't work - and rapidly, at that.

I'm ecstatic that you have new medical practitioners. Please let us know the rest of the story as you get the time. Sounds like you're having a very bad time of being a mum. It would be nice to have two children with NO health issues, wouldn't it?
Currently use Remicade every eight weeks and 4.8 gms. Lialda daily. In remission.

All doctors are informed that I'll never use prednisone again unless I'm admitted unconscious via the E.R. If that happens, when I awaken I'll stab the doc who ordered it right through the heart.
02-12-2016, 04:17 PM   #15
Forum Monitor
Farmwife's Avatar
Join Date: Apr 2012
Location: Michigan

My Support Groups:
for good doctors!!!!!

Just hold on there. It might still takes some time to get a handle on things.
My Grace is still having new things pop up.

Keep us updated!
02-13-2016, 05:08 AM   #16
Forum Monitor
Sascot's Avatar
Join Date: Aug 2011
Location: Falkirk, United Kingdom

My Support Groups:
Glad the nurse and doc seem to be trying to find out what's happening. It is very frustrating watching them suffer with no one helping. Hope you get some answers soon
02-13-2016, 09:48 PM   #17
Forum Monitor
kimmidwife's Avatar
Glad you fi all have someone in your corner!!!!
Keep us posted!!!

Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.

Crohn's Disease Forum » Parents of Kids with IBD » Hubby thinks middle daughter has crohns
Thread Tools

All times are GMT -5. The time now is 11:13 PM.
Copyright 2006-2017