Crohn's Disease Forum » Parents of Kids with IBD » Fighting for a diagnosis

03-26-2013, 07:54 AM   #1
Join Date: Mar 2013
Fighting for a diagnosis

I've never written on or used a forum before, but I feel i'm at a point where I need the support of other parents in a similar situation and a bit of insider knowledge!

I have 2 son's and I'm struggling with my youngest who will be 18 months this weekend. Harry is developing well and generally a very happy child so looks healthy (albeit a bit pale) and his big smile distracts everyone!

At just 2 weeks old he contracted the rota virus, gave us a bit of a scare and ended up in intensive care for a few days. Following his recovery he was diagnosed with a severe intollerance to all dairy proteins and put on neocate. All was fine until I weaned him and since then I feel like he has been consistently unwell, yet the doctors say he is too young to be displaying signs of crohns disease, which is prefilic in our family.

Harry has explosive nappies, which are often very mucusy and full of undigestive food. He struggles with stomach cramps, gas and consitipation, walking around and around in circles some days in tears, not wanting to be held, until the pain passes. He has also suffered with nazal congestion, has a mild case of eczema on his legs and face. He has very little appetite, but due to the nutritional make up of neocate maintians a reasonable weight. he can often appear to look yellow when we are dealing with a prolonged episode of stomach upset.

Blood tests show he is anaemic, but the only recommedations is to give him more iron in his diet. He sleeps for 14-16 hours a day which just isnt normal for an 18 month old toddler. Stool tests have come back inconclusive.

I am back to see a different pedetrician at the hospital this thursday and I just feel like no one is taking his symptoms seriously. I know in my gut that something is not right, this is not a normal situation for an 18 month old, but the doctors seem unwilling to look any further until he is older when they feel tests may be more conclusive. Am I being unreasonable in pushing for more of a serious investigation/diagnosis or should I wait until he is older and just keep going with the situation as it is?

Would appreciate any support on maybe the right questions to ask when i feel like i'm being fobbed off, with the 'it will pass' line!

Thanks for taking time to read my post.
03-26-2013, 08:47 AM   #2
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Clash's Avatar
So sorry to hear of all the troubles your son is having. We have a Parents forum filled with caring, compassionate parents, there are several young children that have been undx as of yet or already been through testing and diagnosed.

You can check out the Parents forum from the main page.
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara

Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira

Last edited by Clash; 03-26-2013 at 02:43 PM.
03-26-2013, 11:25 AM   #3
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Location: El paso, Texas

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hello Haynes79. I am so sorry you are going thru this. Been there, done that. Follow your instincts, I push, change doctors, I got second and third opinions. At some times I felt paranoid, but sadly I was right. I really hope you are wrong. But until you feel positive inside you, keep going. Just my opinion. Best wishes to you and your baby.
Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.
03-26-2013, 01:20 PM   #4
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Join Date: Nov 2012
Location: Vista, California

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Hi. Wow, your story sounds a lot like ours. My son Henry became ill at around 18 months following a bout of Hand foot and mouth disease. He had all the same symptoms: terrible gas, bloating, explosive diapers with mucous, undigested food, blood and anemia. He also is very bothered by dairy, although he is not allergic I am told. Finally, a nurse practioner at his pediatrician's office took us seriously and he was admitted to the hospital after abut 6 months of symptoms so that they could perform diagnostic tests. Ultimately he was diagnosed with IBD indeterminate, prehaps Ulercative Colitis.

One thing his GI doctor told me was there had to be a certain amount of disease progression in order for them to see anything on the tests, so had I rushed him to ER when it first started happening they might not have been able to do much or see anything on the scopes. It's terrible to know something isn't right and to have to reach a crisis point before any one takes it seriously.

Have they done a fecal calprotectin test on him? That's what I would ask for. It's a stool sample test that is non-invasive. For my son, it has been the best indicator of his inflammtion. His bloodwork didn't show significant systemic inflammation even at the height of his flare.

The good news is my son responded really well to the initial treatement of prednisone, and is doing really well on sulfasalazine as a maintenance drug. He is 4.5 years old now.
We still have to really watch his iron, and sometimes supplement.

Hugs, mama. Keep us posted.
03-26-2013, 02:23 PM   #5
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Location: New South Wales, Australia

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Hi Haynes and welcome to the forum.

I'm sorry to hear about your little boy..
Keep searching for answers till someone listens...usually our instincts are right.

It took a year to get my daughter DR would listen, they thought i was going crazy going back to see them every few days...but i knew something was wrong and i wasn't giving up till i had an answer.

Good luck.
Daughter dx CD March2012...
(aged 14)

Currently on:
125mg Imuran

Dx Premature Ovarian Failure 2014

03-26-2013, 03:04 PM   #6
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Join Date: Jan 2012
Location: Toronto, Ontario
Keep pushing until someone listens to you. My daughter started having symptoms when she was about 18 mos old. Not as severe as your son, but symptoms. They were always passed off (by dr's) as normal childhood ailments. Then when she was 8 she got really sick and ended up in the emerg. She spent two weeks in hosp having test after test. When she was released, I was told she had messenteric adenitis and we were sent to a pediatric GI. From there she ran blood work and more tests, and blood and scopes etc. She was unoficially diagnosed with Crohn's, later to be switched to ulcerative colitis.
Keep pushing until you are satisfied with their answers. ((((hugs))))) This is a great forum, full of wonderful, knowledgeable, experienced, and some brand new (to IBD) parents. Good luck!
Samantha, AKA Devynn's mom

Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
Mezavant Mar 2012- Nov 2012
Sulfasalazine-Nov 2012
03-26-2013, 03:43 PM   #7
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Hi Haynes

Sorry you found your way here because your little one is so poorly. It seems rare but not unheard of for a child so young to be diagnosed.

I am sure there will be help and advice along from people with really young children.

Hugs, and I hope you get some answers soon, Good luck!


Daughter 24, 1. Upper GI and colonic dysmotility with viscernal hypersensitivity.
2. Predominant Constipation with slow colonic transit and moderate gastroparesis,
3. Nephrolithiasis
4. Osteoporosis
Sacral Nerve Stimulator fitted Nov 17.

Peristeen Irrigation every day.
Self Catheterisation

Waiting for bowel stimulator!
03-26-2013, 04:39 PM   #8
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Hi, my son was 12 when diagnosed so I don't know much about dealing with younger kids, but there are quite a few one the forum, I'm sure they will jump on and help. Just wanted to wish you luck getting answers - keep pushing, you know your child best!
03-26-2013, 07:58 PM   #9
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Location: Michigan

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Wow, it's like reading a bit of our journey. My heart breaks for you and him.
I'm hear to tell you it's NOT normal and you are right!
I started pushing for answers when my little Grace was two. I had had enough! Since birth I bought the line of, she will grow out of it (still waiting). The insincere docs and nurses about drove me crazy. Grace also is growing OK and has a big smile but they couldn't see the pain she had and the sleepless nights I spent in tears. I had had the GI and her GP look me in the face and said there is NO WAY she can have IBD because she doesn't have diarrhea and blood in the stool. You'll find every kid on here differs. No two symptoms are alike. Grace for the most part has normal labs. Her scopes were clear but they found microscopic damage pointing to IBD (he calls it colitis for now, has to see visual proof in her track). Also for good measure she had another rare disease called Eosinophilic Gastritis.
Does he have anything else? Joint pain, eye problems, skin problem, ect........
Who else has it in your family?
The blood results what was off in that?

Oh ya, welcome to the forum!
Paging, Suzysu , Momto2girls and DanceMom and Niks
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,
03-26-2013, 08:22 PM   #10
Senior Member
I'm sorry that your little one is not well. If you feel that something is indeed wrong and your current docs won't listen then you need to find a doctor that will. The path to a diagnosis is not always easy. In fact, my daughter is now 8 and has been struggling since birth and we still don't have exact answers. I wish you the best.
03-27-2013, 12:57 AM   #11
Crohn's Mom
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Location: Florida

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Hi Haynes79 and welcome !
I'm sorry you had to find us, but glad you did

I personally don't think you're wrong for wanting more tests done.
It sounds like with your sons symptoms that you're GI should at least be willing to consider doing a colonoscopy at minimum.
My middle son had similar symptoms to what you're describing at just 4 months old and had 2 colonoscopies by the time he was 6 months ! ( it was determined that he had allergic colitis).

Keep pushing as long as your instincts tell you to!
I assume your current GI is aware of the family history of Crohn's ?

Mom to Gab (20)
DX: Crohn's 2/2010
and Austin (18)
DX: Crohn's 7/2013
03-27-2013, 01:46 AM   #12
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CarolinAlaska's Avatar
Join Date: Jan 2013
Location: North Central, Illinois

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Hi. Sorry your son is having so much trouble. I honestly think my daughter got her genes switched on to crohn's at the same age as your son, and right after an especially bad round of rotavirus. We were blown off after normal blood tests and were told that we had a "petit girl". Her diarrhea persisted and abdominal pain persisted until she was 13 and didn't hit puberty. She'd had all kinds of well child checks - at least yearly. No one ever questioned the original diagnosis (or lack of it). Now I wish I would have asked for a colonoscopy back then. Can't go back though, can I? Anyway, I hope her story helps you to keep knocking. Ask for a GI consult for the chronic diarrhea and ask for a colonoscopy if they will do one on a child so young...
J's story:
*J, 18, Crohn's diagnosis 1-2013 (age13), intermittent NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.

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