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03-31-2017, 02:42 PM   #1321
izzy26
 
Join Date: Jul 2015
Location: West sussex, United Kingdom
Hi all, my four year old has had consistent high calprotection levels of over 600 (don't record here in the uk once over 600!) Has tummy pains, odd fevers of a night, back pain, very poor appetite, slow to gain weight. Currently 11.1kg...colnoscopy/endoscopy shows inflammation of the esophagus but scan to check bowel.....is this crohns or GERD? SHE DOESN'T vomit unless travelling in the car, and mainly constipated xx
05-01-2017, 01:57 PM   #1322
Okidli
 
Join Date: May 2017
Location: Philadelphia, Pennsylvania
Hi all - I am new to this forum and to these issues, although I have been reading a lot. My 9 year old daughter tested positive for Celiac in late January, 2017 but her GI doctor told me on the first visit she thought it was IBD "because you do not see blood in the stool with a Celiac". I explained to her that my whole family had a virus and some gastro issues - pain and diarrhea - and that was the only time my daughter ever had any blood. In fact, she has never had a symptom in her life. No prior stomach pains, no diarrhea or constipation, no other pains anywhere. She has been growing well, eating well and very active. Still, my GI doc insisted we do a calprotectin test and a colonoscopy. Her calprotectin came in very high (above 2000). BUT, when I asked to repeat it 10 days later, it was way down to 218. This also supported my theory that the blood was related to a viral gastro. However, they also found inflammation after the colonsoscppy. It was described as mild to moderate and they called it indeterminate IBD. Still, if she did have a Gastro, would we not expect some inflammation. My GI doc at CHOP has no answers. She told me to wait and come back in a few months!!! That seems crazy to me? We are just going to do nothing? Here is a healthy kid a few weeks ago and now we think she has Celiac and IBD? And we do nothing? I started a gluten free diet right away. It helped and the blood and diarrhea went away completely. She still does get mild, brief tummy aches either when she is hungry (which is ALL the time!) or while eating or an hour or two after meals. This often happens once or twice a day but we have also had days with no pain. She gets a little gas with the pain. It seems very minimal. Her bowel movements look totally normal. She has lots of energy, good appetite, no blood or mucous, no other symptoms except a little gas pain. Does this sound like anyone's experience at the beginning of IBD? Does anyone else have a child with Celiac and IBD with sudden but mild onset who was previously healthy from birth? I am so worried!!! Thanks!!!
05-01-2017, 03:08 PM   #1323
Maya142
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My daughter did not have severe symptoms either. She had abdominal pain and constipation. We honestly thought we were ruling out Crohn's with a scope. I was shocked when I got a call from her GI saying it was definitely Crohn's.

Kids with Crohn's can have a variety of symptoms. Some kids have diarrhea and bleeding. Others deal with constipation. Some don't have ANY gut symptoms and are only referred to the GI when there are growth issues. It really, really varies. After being on this forum for several years, what I have learned is that there is no "normal" presentation. There are kids who are asymptomatic but have had such severe inflammation that they needed surgery.

If you are uncomfortable with the doctor's diagnosis, I'd encourage you to get a second opinion - the big three hospitals for IBD are CHOP, Boston Children's and Cincinnati Children's.

We also go to CHOP.

I think you have a couple options. You can choose to wait and see - redo her Fecal Calprotectin in a few months and see if it's still high. You can choose to get a second opinion or you can choose to treat her now.

Honestly, doctors don't diagnose kids with Crohn's easily, so biopsies must have shown chronic changes that are associated with Crohn's.

I will tag some other parents so you can get some more opinions:
my little penguin
Clash
pdx
Mehita
crohnsinct
Tesscorm
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
05-01-2017, 08:09 PM   #1324
pdx
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Hi Okidli. I think I'd probably get a second opinion in your case. What test did the doctors do to diagnose Celiac Disease?
__________________
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
05-01-2017, 09:19 PM   #1325
Tesscorm
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Location: Ontario

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With some kids (even adults), it can take quite a while to get a firm diagnosis, perhaps partly because symptoms can vary to such a degree.

My son was never sick... Six months before diagnosis, he started with some symptoms... but, sometimes, you (and/or doctors) don't see how the pieces fit together.

- on and off fevers and diarrhea - ped said there was a gastro bug going around
- canker sores - ped said possibly due to his new toothbrush
- night sweats - due to the fever caused by the bug
- weight loss and fatigue - caused by his body fighting the bug...
- fatigue - he'd just added a second phys.ed. class (2+ hours/day) plus played on two hockey teams
- gas

We had several follow-up apptmts with our ped and she ran bloodwork and a small bowel x-ray. On one round of fever/diarrhea, we went to the local hospital where they did ultrasound. All tests showed minor indications but not unusual with a gastro bug.

Eventually our ped suggested we go to the children's hospital rather than wait for a gastro referral. We did and he was tentatively diagnosed within hours. And, surprisingly to me!, it was my son's passing comment on 'canker sores' that clicked all the pieces together for the GI.

All this took almost six months.

My son had no pain, no bleeding, only lost his appetite when he had a fever, no nausea...

The symptoms can vary so much, it's not uncommon for a delay in getting a firm diagnosis. Very frustrating!! I would either start making arrangements for a second opinion or begin to keep a journal of all symptoms, even if it seems unrelated or justified (ie new toothbrush causing canker sores) and follow-up with your current GI sooner, rather than later.

Some other symptoms may be joint pain, anemia, heartburn...
__________________
Tess, mom to S, 22
Diagnosed May 2011

Treatment:
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
05-02-2017, 09:46 AM   #1326
Jabee
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Celiac disease can be diagnosed fairly easily with an endoscopy and blood tests for antibodies to gluten. Most GIs recommend not beginning a gluten free diet before a certain diagnosis since going gluten free will (obviously!) heal things up. That said, if the GI wasn't sure what your daughter has/had, and wants to wait, then by all means go gluten free. The two diseases (crohn's and celiac) can co-exist (I have both), but if she is much better on a gluten free diet then I would continue with it. It sounds like she is much better, with symptoms that aren't bothering her too much, so I think Maya142 is completely right: it's your (and your daughter's) choice to wait and re-test or get a second opinion right now. I hope she continues to improve.
05-13-2017, 04:44 AM   #1327
Okidli
 
Join Date: May 2017
Location: Philadelphia, Pennsylvania
Thank you to all of those who responded to my note. My daughter was doing well and then the daily mild pains became just a little more frequent over the last few days. Then she went from perfect poops to bloody D. Full on, 10 times a day. The diagnosis is hard to deny. Ow. I am so scared, worried for her and depressed. I am trying to stay strong for my daughter but when I am alone, I feel so devastated. We went to CHOP ER and they sent us home. I feel like we have been in waiting mode for months. Shouldn't they do something at this point? But I am scared of the drugs too. She is only 9 and 4 mo the ago was in seemingly perfect health.

Also, any advice on diet through this flare (and beyond)? Since she is also Celiac, obviously no gluten.
05-13-2017, 04:47 AM   #1328
Okidli
 
Join Date: May 2017
Location: Philadelphia, Pennsylvania
My daughter did not have severe symptoms either. She had abdominal pain and constipation. We honestly thought we were ruling out Crohn's with a scope. I was shocked when I got a call from her GI saying it was definitely Crohn's.

Kids with Crohn's can have a variety of symptoms. Some kids have diarrhea and bleeding. Others deal with constipation. Some don't have ANY gut symptoms and are only referred to the GI when there are growth issues. It really, really varies. After being on this forum for several years, what I have learned is that there is no "normal" presentation. There are kids who are asymptomatic but have had such severe inflammation that they needed surgery.

If you are uncomfortable with the doctor's diagnosis, I'd encourage you to get a second opinion - the big three hospitals for IBD are CHOP, Boston Children's and Cincinnati Children's.

We also go to CHOP.

I think you have a couple options. You can choose to wait and see - redo her Fecal Calprotectin in a few months and see if it's still high. You can choose to get a second opinion or you can choose to treat her now.

Honestly, doctors don't diagnose kids with Crohn's easily, so biopsies must have shown chronic changes that are associated with Crohn's.

I will tag some other parents so you can get some more opinions:
my little penguin
Clash
pdx
Mehita
crohnsinct
Tesscorm
Thank you Maya142! Would you be willing to speak with me about your experience and advice? I know it is a lot to ask but I could really use the support of a mom who understands. Around me, I feel no one understands just how serious and devastating this is because my daughter still looks the same. Thanks so much!
05-13-2017, 04:52 AM   #1329
Okidli
 
Join Date: May 2017
Location: Philadelphia, Pennsylvania
Hi Okidli. I think I'd probably get a second opinion in your case. What test did the doctors do to diagnose Celiac Disease?
Thanks pdx. Do you (or anyone) have a doc you would recommend? I definitely want a second opinion now to understand and assess my options.
05-13-2017, 12:23 PM   #1330
Maya142
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I'll PM you Okidli.
06-11-2017, 11:19 PM   #1331
seoreh
 
Join Date: Jun 2017
Location: new york, New York
My son is 9 and a couple of months ago started having nausea, horrible stomach pains, diahrrhea, cramping, it subsided and came back a few weeks later, it went away again and came back- after 3 times I knew this wasn't a regular stomach ache. We went in and had ultra sounds, x rays, blood work but the only this abnormal were inflammation markers in bloodwork. He is yet having a flare after eating some chicken, and crying with nausea. WE have been referred to a GI doctor and will go this week. I feel awful because I was trying to give him a very plain diet based on " breaking the vicious cycle" book, but he ate this chicken and is flaring. ANy advice would be very helpful. thank you so much!
06-12-2017, 05:19 AM   #1332
CarolinAlaska
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My son is 9 and a couple of months ago started having nausea, horrible stomach pains, diahrrhea, cramping, it subsided and came back a few weeks later, it went away again and came back- after 3 times I knew this wasn't a regular stomach ache. We went in and had ultra sounds, x rays, blood work but the only this abnormal were inflammation markers in bloodwork. He is yet having a flare after eating some chicken, and crying with nausea. WE have been referred to a GI doctor and will go this week. I feel awful because I was trying to give him a very plain diet based on " breaking the vicious cycle" book, but he ate this chicken and is flaring. ANy advice would be very helpful. thank you so much!
Feeling responsible for our children is a normal response, but remember that you didn't choose this for him. You are his biggest advocate and support. I know it isn't easy. I hope you all can figure it out quickly with the GI's help. I'm sorry you had to find us, but this forum is a great place for support.
06-12-2017, 02:16 PM   #1333
seoreh
 
Join Date: Jun 2017
Location: new york, New York
Is feeling tired generally part of inflammatory bowel diseases? I suppose it differs with every child and situation.
06-12-2017, 02:17 PM   #1334
Maya142
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It's definitely common - inflammation can cause fatigue, anemia is common with IBD and causes fatigue etc.

Hang in there - hope the GI has some answers.
06-12-2017, 02:39 PM   #1335
pdx
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Hope you get some answers soon, seoreh.
08-25-2017, 02:20 PM   #1336
lively_child
 
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This is my first post, so I will try to keep it short, and any suggestions are appreciated 😊. I only hope our journey through doctors and misdiagnosis and medicines can help others like this site has helped me. This thread appears to be for kids that are currently undiagnosed and I thought I would share my son’s symptoms. It took almost a year to get diagnosed because of his strange symptoms that now make up the “puzzle”.

My son first showed major symptoms when he was 15. Prior to this he was very healthy. He had been sluggish for about a year, but we thought it was just teenage laziness. He never had diarrhea and had constipation problems since he was a baby. I think for this reason Crohn’s was overlooked…and the fact that he is super quiet and rarely complains about physical discomfort.

It started with chest pains, saying it hurt to eat. Doctor told us was heartburn and sent him home.
2 weeks later, my son was not eating much at all and the doctor then did ultrasound/labs and found his gall bladder was slightly swollen, he was anemic and his inflammation markers were high. Doctor was convinced it’s gall bladder related.

Before anything was done about the gall bladder (thankfully) he was in the hospital for 9 days because of weight loss and dehydration. While in hospital an endoscopy showed that he had severe erosive esophagitis. The doctors were thinking GERD or EOE was the cause.

They sent us home and treated us for GERD with large amounts of PPI’s (Nexium and Prilosec). Over the next 6 months, he kept taking the meds and he kept telling me they didn’t help and continued to get sicker. The anemia getting worse, more weight loss, less appetite, severe leg cramps and no energy at all. Finally, I got fed up with the doctor not listening or doing anything to help. We quit the PPI meds (slowly I should add) that were obviously making him worse and found a new GI doctor because I knew it wasn’t GERD and this Dr. just wouldn't listen.

We visited the new Dr. and I was so relieved when she seemed genuinely concerned and insisted on full lab testing for nutrition an endoscopy and colonoscopy. A week later after the scopes she was sure it was an IBD. After a CT scan, confirmed the moderate to severe Crohn’s. It only took a new Dr. that was willing to take a look at all the "puzzle" pieces to get a diagnosis. She had him feeling better within 2 weeks of the initial visit.

My Son is much better today.
His symptoms included erosive esophagitis, anemia, weight loss, leg cramps, fatigue and the inflammation in his blood tests. No diarrhea, no fever, no vomiting, and no blood in stool.

Don’t be afraid to get second opinions, push for testing if you think it’s necessary and ask questions. And do your best to keep a copy of all test, lab and scope results, this has helped me numerous times.

Mom of I (16) diagnosed at 15

Current Treatment:
Remicade started in June 2017
Vitamin D supplements
Iron Supplements

Past Treatments:
Imuran
Prednisone
Nexium
Prilosec
08-27-2017, 05:48 PM   #1337
pdx
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lively_child: Thanks for your post, and I'm so glad that your son is already doing so much better now that he has been correctly diagnosed and treated!
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