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Unfortunately I do have some experience with vasculitis and immune disorders. According to A's Rheumo (and GI agrees) her Differential Diagnoses are - IBD, Primary Immunodeficiency with Autoimmunity, and Systemic Vasculitis (PAN). Apparently IBD would be the more common and easiest to diagnose of the 3 but we're still in the process of waiting and testing.

A has had an MRA (which I would suggest doing at the time of your MRI if doc will agree) which showed some benign defects. An MRA will only detect large vessel vasculitis so A will possibly have a CTA in the future. We've put that off for now due to the risks involved.

As far as immune testing, we started with basic immunoglobulin labs and antibody testing. It looks as if she may have issues with sustaining protection from vaccines but we will retest in early July to see if this is the case. We are waiting on prior auth to have more extensive testing done - B Cell panel, CD45RA/RO, FoxP3, and Toll-like Receptor Function assay. The immune system is such a complicated system and unfortunately testing is a time-consuming (and expensive) process.
 
Is there anything I can physically do to help him? Apart from try and get a referral for the gastric team again?
What do you think the orange 'blood' could have come from?
 
DanceMom said:
Unfortunately I do have some experience with vasculitis and immune disorders. According to A's Rheumo (and GI agrees) her Differential Diagnoses are - IBD, Primary Immunodeficiency with Autoimmunity, and Systemic Vasculitis (PAN). Apparently IBD would be the more common and easiest to diagnose of the 3 but we're still in the process of waiting and testing.

A has had an MRA (which I would suggest doing at the time of your MRI if doc will agree) which showed some benign defects. An MRA will only detect large vessel vasculitis so A will possibly have a CTA in the future. We've put that off for now due to the risks involved.

As far as immune testing, we started with basic immunoglobulin labs and antibody testing. It looks as if she may have issues with sustaining protection from vaccines but we will retest in early July to see if this is the case. We are waiting on prior auth to have more extensive testing done - B Cell panel, CD45RA/RO, FoxP3, and Toll-like Receptor Function assay. The immune system is such a complicated system and unfortunately testing is a time-consuming (and expensive) process.
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Dane Mom thanks for that. Unfortunately we are in Scotland and we have to go with the tests the hospital do - which can be very limiting. She has had full Rheumatology testing done and this is repeated every six months at the moment. Was involved with Immunology at the beginning and they diagnosed Idiopathic Angioedema as she gets swelling to her lips, face and left knee!!! They have always just said it is her immune system over reacting which causes this. I know they are keeping a close eye on things but don't do real indepth immunology testing - wish they did.

Thanks for all your help - have felt so alone - hubby putting head in sand and not facing up to whats going on. Feel like she never gets a break from ill health and just want some "normal teen years" for her. Hopefully we will get some answers from the MRI but not that optimistic as we thought we would get answers from endoscopy/colonoscopy.

Thanks again xxxx:)
 
My daughter's lips swelled at one point too. They would swell so large that they would split and bleed. She was on Prednisone at the time so the doctors dismissed it as "moon face". I'm not sure I buy that but I didn't push the issue.

Has she had her Immunoglobulins (IgG, IgA, IgM) checked? That's a very simple blood test that could give some important information about her immune system. It is a good starting point.
 
Yes Dance mum I'm sure she has. Unfortunately we don't get copies of her results. I had to request a copy of her file (and pay for it) and its up to the doctor which letters they let you see!! I feel I am in the dark as they usually only say whether the bloods are ok or just lately the levels of ESR, iron, caprotectin. Normally her Rheumatologist will just say whether they are "ok" or not - never get told levels and only once did she tell us about the complement levels. Wasn't till I got copy of file I saw level of C4 was 15 before she became ill and dropped to 8 and has only climbed back to 11 in last five years. I do have copies of some of her blood results but don't know what any of the levels mean. Am going to dig her file back out and see. Unfortunately don't have copies of any of her latest results.

Thanks again DanceMom for your help xxx
 
Need some help ladies. Feeling really down today. Had phoned Gastro for Katie's MRI results last week and no one got back to me. Phoned again today and Dr Flynn just called to say scan was essentially normally. She had forgotten all about "pencilling her in for a capsule endoscopy and colonoscopy" if MRI was ok. Her lists are now full until after the 8th July even though she said it would be done the end of June beg of July. Asked about Calprotectin test that was done when she was in hospital on the 20th May and was still waiting on results of that also and it is now 856 which has gone up from 405 (Feb result), she had forgotten she had asked for the test again. Now she has saw this level it needs more investigating FFS! Now needs more stool tests to check for C-Diff (last two tests clear) and another Calprotectin. Will let us know dates for Capsule Endoscopy and Colonoscopy which she has new list available! She will discuss with Dr Davidson (Rheum) and get back to me. Asked if it could be her gastritis causing this level and she said no either infection or inflammatory bowel disease. Sje has also put the wind up me by saying on MRI her uterus was bulging with possible fibroids. She will need to speak to radiology again to see whether she needs an ultrasound and referral to adult gynaecology. She doesn't need anything else wrong with her for gods sake. Also been referred to Cardiology for Postural Orthostatic Tachycardia Syndrome. My stress levels are through the roof. This has been going on for months now. Getting fed up beyond belief. Just need to know what is wrong. Sorry just need to offload before I crack!
 
That's crazy I would be so p*ssed. Can she get her on a cancellation list for pill cam/endoscopy. Seems like she should squeeze her in somewhere/somehow.
 
Can you get referred to the kiddie hospital in London ( Ormond St.. I think ?)?
Can you GP send the request for you ?
While you wait since they seem to have longer wait lists.

That sounds horrid .
 
Thanks ladies. She has said her lists are FULL and it will be when she gets her new lists made up! Can't get a referral as would no a valid reason for second opinion and funding would be difficult to get. (Have asked GP before). He thinks it best whilst investigation ongoing to stick with Yorkhill. Got the stool sample forms and luckily she managed to "go" last night. Forms were for C Diff, C&S and Norovirus? I thought norovirus was a short lived virus. She didn't give us one for repeat calprotectin. Anyone any advice re C Diff? Her last two stool samples for "infection" came back negative but don't know if they were specific. Also don't know why she is repeating colonoscopy as she only had the other one end of March and biopsies were ok but she couldn't reach small bowel which is why she did MRI and is doing capsule endoscopy. She said she might as well do it as Katie would need the full bowel prep again for capsule! Concerned at the rise in her calprotectin going from 133 two years ago when they diagnosed gastritis then 405 in Feb and now 856 - what do you think about it? Also scared about the fibroids as she is only 17. Just want some answers from it all now. Thanks for being a listening ear.
 
Phoned GP today and her stool results for infection are normal. The couldn't do the C Difficile one as "c difficle toxin testing is inappropriate for non diarrheal samples". It was a normal/hard poo she passed so they wont test it but diarrhea isn't her problem it is more that she is constipated and only has it when she has taken loads of laxatives to get things moving!! Need to phone consultant on Monday to see if she has a date for us yet for capsule endoscopy and repeat colonoscopy!
 
Looking for any words of wisedom ladies. Katie had her upper GI endoscopy, capsule endoscopy and ileo-colonoscopy yesterday. Her consultant was on holiday so it was a replacement consultant. He said appearance of bowel and stomach was normal, even her gastritis has healed up. He managed to get biopsies from the top of the small bowel and end of small bowel. We have to wait till mid August to get the results of the capsule test as it will be her consultant who will review the pictures. We asked him if appearance normal why calprotectin was at 856. He said we would need to discuss with Dr Flynn but could possible be a false test. Here is where I am confused for the last six months her calprotectin has been rising, her ESR has been raised and her ferritin was really low. I asked Dr Flynn when she phoned us could it be a false calprotectin result and she said no! So as you can see I am puzzled. Her MRI was off normal appearance apart from the fact it showed a bulging uterus with possible fibroids (she is being referred to gynaecology for that). Can you get a false calprotectin test - has anyone else here had this. The one in March was 405 and the one in May was 856. This is all messing with my head as they were testing her for the medication for IBD as well. I know we have to wait on pictures from capsule but what if these show normal as well - what else could be causing the abnormal results for the last six months?
 
Sorry if I've asked this already, cat26, but I can't remember all the details of your situation. Has she been tested for Celiac? Celiac can cause a high calprotectin level.
 
Is she on omeprazole? I've read before that omeprazole can cause inflated readings on fecal calp tests. Not sure how true that is. A had a result in the 460s and was feeling well, but on omeprazole. She recently had a result of 18 and was symptomatic, but not on omeprazole. Makes me wonder.....
 
Have you gotten the results of the biopsies taken during her colonoscopy? The reason I ask is that my daughter's bowel looked mostly normal when they did the colonoscopy but the biopsies showed chronic inflammation and granulomas, and so she was diagnosed with IBD.
 
DanceMom said:
Is she on omeprazole? I've read before that omeprazole can cause inflated readings on fecal calp tests. Not sure how true that is. A had a result in the 460s and was feeling well, but on omeprazole. She recently had a result of 18 and was symptomatic, but not on omeprazole. Makes me wonder.....
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Dance Mom - yes she is on Esomeprazole and was on omeprazole before that has been on it for almost four years now. Didn't know that could raise it and consultant has never mentioned it before. Just seemed strange that it rose so quickly - 133 two years ago, 405 in March and 856 in May.
 
Maya142 and my little penguin biopsies from March should nothing and we need to wait 2 to 3 weeks for these biopsy results to come back. Also they are checking her bloods for the chicken pox virus which I googled and there is research showing that it can lie in the lining of the gut for years and when immune system is low it can flare up so that's why they must be checking for that. Also read that calprotectin can be higher with lupus and rheumatoid arthritis. They have mentioned lupus in the past with Katie but so far her ANA has been negative but has a low C4 and borderline C3 complement in her bloods. She said we would have a joint meeting with her rheumatologist to make a plan on where to go from here. We have had so many things mentioned in the last few years I don't have a clue anymore. Will just need to wait and see what biopsies and pill cam results show. Will also ask about the esomeprazole. Thanks for your replies just still feeling a little lost with it all. Poor Katie is still so sore today and has a really sore back and tummy. She still hasn't passed pill cam out yet either but only went in on Friday. Her mouth is full of ulcers again and throat red raw looking. Its knocked her off her feet again.
 
Oh and forgot to say it took over four hours again for the piccolax bowel prep to work again. Just seems really slow to work with her. She is also being investigated at cardiology as well for POTS (postural tachycardia syndrome) which can also cause gastric problems also. Wish we could go private but can't afford to and have to go through the NHS which takes forever. She is booked in for a table tilt test for the POTS on the 8th of August so might rule out one thing soon. Would be lost without this site to ask you wonderful ladies questions. xxxxxx
 
Hi guys need advice for 11 year old son was on antibiotics for a month diaherra abdominal pain started no gi run 2 stool test pcr negative for c diff so he ruled that out fecal calpro 65 slightly raised gi thinks ibs upper gi normal can is have advice guys what do you guys think
 
Hi guys need advice son was on antibiotics for a month diaherra started abdominal pain gi did 2 stool test pcr negative for c diff he ruled that out upper gi normal fecal calpro 65 slightly raised pain worse at night still diaherra sometimes temperature. Gi thinks ibs Ben had a colons copy nothing seen need advice Ben is 11 what do you guys think
 
Hi all,
I myself have crohns-colitis. My son started showing symptoms in November. Belly pain that comes in goes. Mostly by belly button. When he gets the belly pain he dosent eat and has increases loose bm. He has had his appendix checked. Normal. He had a ct only thing showed was pnenomena (which was odd as xray was normal? ) his blood ct showed extremely low wbc (range was 5.0-14.5 and his was 2.9) , his sed rate was high (range 0-20 and his was 29), rbc-dw I think it was ..was low but forget the numbers off hand.

We finally got ped agree to gi at a children's hospital which is Tomorrow- Wednesday. His blood and cdiff stool was all negative.

I have kept a diary for 2 weeks and no relations to food with the belly pain .
 
Hi haven't posted for a while as so many tests on Katie taking so long. We are still no further forward they completed pill cam (first one didn't work and had to wait on another appointment). What that showed is raised lymph nodules throughout her bowel and up intestines and into tummy. Gastro said she has only really saw this before in babies with a milk allergy (we have tried excluding milk before for a month with no difference). She is going try her again on exclusion diet. She is also being investigated for autonomic nervous system neuropathy (due to her diabetes) as they have discovered she has POTS (when standing her heart goes to fast). Been started on heart medication but they have also said it could explain gut and bowel problems as nerve could be damaged. Still has a raised calprotectin level and slightly raised ESR and CRP. She is going to be moved soon to adult clinic for Rheum and Gastro - have a meeting with them next week. Have been asking gastic emptying test for last 2 years and still waiting so need to put my foot down. Gastro said she also hasn't ruled out an auto immune condition or possibly the start of Crohn's but not sure. Living in Scotland so we have to take what the NHS gives us and can't afford to go private. Hopefully autonomic tests will gives us an answer and the rest is just wait and see :(
 
I was dx'ed with POTs. There are a large portion of those with POTs that have gastroparesis. So I think the gastric emptying test would be important. Autonomic nervous system dyfunction can play havoc with so many different things. If she already has some neuropathy I would push for the array of autonomic functions rests. Although, I guess diabetes can cause neuropathy as well.

I hope you get some answers soon and the heart meds keep her heart rate in check.
 
They have put off doing gastric emptying for over 2 years but I will be asking for them to do it at the meeting next week. Although she has been Type 1 for 11 years her diabetic control has been good and they think she may just be one of the unfortunate ones who develop complications even though she (and I) have done our best to try and keep things at a good level. They have mentioned gastroparesis before in the past. She is on Domperiodone already and cyclizine and Zofran for sickness. Thanks for all your help. xxx
 
Hi! I'm Melissa and my 13yo daughter, Gwendolyn has been told that she could possibly have Crohn's or UC. Three and half weeks ago she began experiencing diarrhea. At first I thought it was just the stomach bug that has been plaguing so many right now, but after 4 days with no sign of relief and increasing frequency I decided to take her to the doctor. At the appointment I told the doctor about how frequent she was going and how uncomfortable she was. She was having some pain up around her belly button. We were told to try Imodium and see how she was over the weekend. Monday (3-2-15) I called the doctor's office and told them that the diarrhea was getting worse, not better. They ordered a stool culture. By Friday (3-6-15) she had obvious bleeding when having a bm. I called the doctor yet again and another stool culture was ordered along with blood work. The following Monday (3-9-15) I pushed to have her seen by the doctor again. Her appetite had disappeared and she was still having diarrhea with blood about 11 times a day. She had lost 11lbs in two weeks. All the test results were coming back normal.. I'm still not sure what they found in the blood test as we were still waiting for results the last I talked to anybody. We were finally referred to a GI. and saw him on 3-12-15. Tomorrow she is set to have an upper endoscopy and colonoscopy. I am hoping for some sort of diagnosis so they can start some sort of medication and she can get some sort of relief.

Gwendolyn is hanging in there. After seeing the GI her appetite has been slowly returning. She is still getting pain and seems to have to run to the bathroom more often when she is moving about. Sleep has become her best friend. She has been out of school for almost a month now and falling behind drastically. I am so sad to see how this is effecting her and I feel very helpless because there is nothing that I can do to help her.

This afternoon she will be starting the miralax prep and I'm pretty nervous about it. With her already frequent bathroom trips and the bleeding when she has a bm I'm worried about what this is going to do to her. This is also the first time she will be going under general anesthesia so that brings on more worrying. She is taking this all in stride and doesn't seem nervous or worried about anything other then getting the IV put in. If anybody has any tips or advice on making a prep go smoothly I would truly welcome it.
 
Hope the scopes provide answers and you get a solid plan moving forward.
Clean out is no fun. We try and make the bathroom as comfortable as possible a small stool for the feet (even a box), video player. Blood is scary and it always seems like there is a ton. We have had to make games out drinking the miralax in order to get it down.
We usually get to clear (actually yellow) pretty quickly, hope it is the same for you daughter.
 
Miramax prep is not too hard on them. I think your daughter won't be too bothered by it after what she's been through. I'm sorry she's had such a rough month. I hope they can find out what's wrong quickly. Have her drink lots to keep hydrated all day!
 
My 13 yr old son diagnosed with crohns a couple weeks ago. Never showed symptoms leading up to this prior flare. I had never even heard of crohns and dont believe it runs in my family anywhere.
He had the flu mist about a month prior to his first flare and I hate to think it was the trigger to the flare.
Does anyone know any information on this?
Creates a lot of guilt for me...
 
Mommy guilt is normal
If they knew what caused crohns - no one would do"that"...
However they don't know
My kiddo was dx at age 7. No family history of crohns either
He is 11 now so it been a few years
Give yourself time it takes a while
Tagging crohnsinct clash Tesscom jmrogers4

Welcome to the club no one wants to join
 
We all wracked our brains trying to figure out what WE did wrong. No one's at fault. Hang in there. The stress does get better. Or maybe we get stronger?
 
I hope it does get easier...
Does there seem to be a catalyst for most? I guess something that set it all in combination with the other components believed to play a role in crohns?
 
I had Mommy guilt since my son's complaints started after he started a px of antibiotics for acne. But the inflammation present had been there much longer than the span of the antibiotics.


There is no certain combo of things that creates a catalyst. A flare(not necessarily the disease) can have different triggers for everybody(or different believed triggers) or no triggers at all.

I let go of the Mommy guilt my time is better spent looking forward with research and insight on how to best prepare him for dealing with this illness, newest meds, etc etc etc.

Good luck.
 
We are all experts at the mommy guilt but truth be known the thinking now is that there are many different types of IBD and each has it's own unique combination of causes etc. Think G.E.M. (Genetics, environment and microbial). Once I started understanding more about the disease I was able to let go of the mommy guilt. Next comes the trying to understand it. It is so different for everyone. I, like Clash, put all my energy now into research, monitoring and trying to make my kids the healthiest possible to combat the disease but also the damage the meds do to their other organs etc.

My older daughter was the same as your son. Few ,very slight symptoms that I managed to ignore for two years until her first flare which ended her in the hospital in ICU! Talk about guilt! But the docs were all great, emphasizing that it was nothing I did or didn't do and that even her ped didn't pick up on it.

Hugs! It gets easier and the community here is great at helping you move along.
 
Very tough stories to hear from everyone
I pray for a cure for our children.
Thanks for sharing
Seems like a common theme is medications that are so common in our lives that cause flares
 
I *think* I saw signs after my daughter had a rotavirus vaccine at 2 months of age. But she started her flare just after her 3rd birthday. But there is no way to know. Don't be too hard on yourself. Try to focus on helping him work through with a feeling of hope. It's tough to be diagnosed at that age.
 
Misty
I think you missed the point
The cause of crohns is not known period too much variability among different groups etc...,

Stating A happened therefore C happened isn't as clear cut.

As a parent I have found it best to focus on what I can control
- be informed on the lastest research -treatment s ( see pediatric research sections )
- teach my kiddo life skills on how to cope /function with school etc even when his crohns is not in remission - life long disease that needs to be dealt
- teach my kiddo how to manage their disease - drugs/insurance companies/doctors/tests etc.,,,,
 
^Agreed. Even though my son's complaints started after antibiotic use it was clear he had damage dating much further back. So you can't attach he had antibiotic to he developed CD.
 
I agree it's very complex and not one thing or medication is at fault it just seems that there is a trigger of some sort to cause an initial flare and for many it seems to be a medication. Even though symptoms may have shown prior possibly unnoticed. I will focus on moving forward because there is no other option, I just think like many who are new to this I am looking for answers and hope that they are found someday to avoid future issues.
 
Hi Im brand new to this forum and so happy to find it. I hope Im posting in the right place. Im looking for anyone that has info or experience with a false negative on the Fecal Calprotectin test or something similar? My child is currently being tested for GI issues and his doctor is putting all future testing in the hands of this test and Im uneasy about relying on one test.
Backstory: I myself was diagnosed with Crohns disease a few months ago at age 34, its been something Ive always dealt with and was labeled IBS/anxiety. It has not always been easy for me, but thankfully so far my flares have been mild-moderate. After several tests and finally seeing a GI who immediately ordered endoscopy/colonoscopy followed by the pill endoscopy- I now had a name for it- and although still in a flare Im having some success with Pentasa and just finished a round of Entocort/Uceris for partial obstructions.
All of my focus however is aimed towards my 7 year old. We have been working with a pediatric GI who is considered one of the best here and I do like him, but Im considering getting a second opinion from a different GI group. My 7 year old has suffered from a few years of off and on- constant diarrhea, horrible abominable pain, losing stool at school/playing/etc. and has gained NO weight in over a year. He has fallen off the growth chart for his age and keeps dropping. What scares me is that his symptoms started exactly as mine did, the exact same age as mine did- as a lactose intolerance in kindergarten. His GI will not test invasively, scope, etc. unless he gets a "green light" from certain tests- something showing inflammation in the stool, especially the Fecal Calprotectin test and my son has received normal results on that. The only non invasive test that came back positive was a strong positive on the hydrogen breath test testing for lactose. At this point his diarrhea and pain is somewhat being managed because we have cut out all lactose, BUT he is still is not gaining weight (which is not indicative of lactose intolerance) and his stool is still not perfect. My GI (he does not treat my son) advised finding someone to scope him because of where MY ulcers and crohns is and how my disease presented. i have shared all my records with his GI. I just struggle with getting that 2nd opinion and possibly putting him under and doing these procedures when his doctor does not believe we need to and wants to avoid the risk, and wants to label him IBS for now. Im battling putting him through an ordeal/risk when he may not need it, but I just can't shake my own personal knowledge of this disease and the fact that I too would get a positive hydrogen breath test- because of the damage done by Crohns.

So my question is- have any of your children ever had a negative result on the Fecal Calprotectin test or not shown WBC in their stool, etc. and then found out they DID have an IBD disease? Is it a test worth challenging?
Thank you so much. Im very grateful for any advice.
 
maudmere said:
Im looking for anyone that has info or experience with a false negative on the Fecal Calprotectin test or something similar?
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Hi Maudmere. Welcome to the forum. Wish there was different circumstances you had to post here.

My son was diagnosed with Crohn's at 13. Though always on the lower end of growth charts, he tapered and started moving off the chart at 10. Because he showed no external signs of CD, pediatrician wasn't worried until 12 when no change in growth velocity got us a referral to GI. His labs have always been normal. Only biopsy results on scope gave the definite diagnosis of Crohn's.

Not sure what part of Texas you're in but Children's Medical Center in Dallas or Texas Chilldren's in Houston have really good pediatric GI units. See if you can get a second opinion at one of those if your GI is hesitant for scope.

Also, has he been tested for Celiac?

Good Luck! This is a great forum and I have learned a lot from the excellent advice of many parents with a lot more experience with the disease than me.
 
I would definitely seek out a second opinion. My son's labs have always been in the normal range except at initial diagnosis but inflammation was running rampant at that time and lots of activity at the TI and in the large intestine.
He was scoped based on that and the fact his father has crohn's and it was immediately apparent we were dealing with Crohn's disease. Fast forward 4 years and dealing with lack of growth and weight gain the entire time we had assumed his disease was under control based on labs. He was given a fecal calprotectin test and it came back elevated but only slightly second FC given a month later was just a little higher then that all other labs still in normal range. He was given an MRE and they found tons of inflammation in the small intestine (not somewhere his father is affected).
Medicine was changed and he finally truly reached remission (gained 40 pounds and grew 7" in a year). His GI last visit thanked me for pushing as he would have just assumed my son was meant to be small but my mommy gut kept saying we were missing something.
Scopes with biopsies seem to be the definitive test and I have heard of several GI's who will not use FC as they don't think they are reliable. Have they only done stool tests? What did blood labs say? ESR levels? CRP levels? Some people just show better with different tests.
 
maudmere said:
Hi Im brand new to this forum and so happy to find it. I hope Im posting in the right place. Im looking for anyone that has info or experience with a false negative on the Fecal Calprotectin test or something similar? My child is currently being tested for GI issues and his doctor is putting all future testing in the hands of this test and Im uneasy about relying on one test.
Backstory: I myself was diagnosed with Crohns disease a few months ago at age 34, its been something Ive always dealt with and was labeled IBS/anxiety. It has not always been easy for me, but thankfully so far my flares have been mild-moderate. After several tests and finally seeing a GI who immediately ordered endoscopy/colonoscopy followed by the pill endoscopy- I now had a name for it- and although still in a flare Im having some success with Pentasa and just finished a round of Entocort/Uceris for partial obstructions.
All of my focus however is aimed towards my 7 year old. We have been working with a pediatric GI who is considered one of the best here and I do like him, but Im considering getting a second opinion from a different GI group. My 7 year old has suffered from a few years of off and on- constant diarrhea, horrible abominable pain, losing stool at school/playing/etc. and has gained NO weight in over a year. He has fallen off the growth chart for his age and keeps dropping. What scares me is that his symptoms started exactly as mine did, the exact same age as mine did- as a lactose intolerance in kindergarten. His GI will not test invasively, scope, etc. unless he gets a "green light" from certain tests- something showing inflammation in the stool, especially the Fecal Calprotectin test and my son has received normal results on that. The only non invasive test that came back positive was a strong positive on the hydrogen breath test testing for lactose. At this point his diarrhea and pain is somewhat being managed because we have cut out all lactose, BUT he is still is not gaining weight (which is not indicative of lactose intolerance) and his stool is still not perfect. My GI (he does not treat my son) advised finding someone to scope him because of where MY ulcers and crohns is and how my disease presented. i have shared all my records with his GI. I just struggle with getting that 2nd opinion and possibly putting him under and doing these procedures when his doctor does not believe we need to and wants to avoid the risk, and wants to label him IBS for now. Im battling putting him through an ordeal/risk when he may not need it, but I just can't shake my own personal knowledge of this disease and the fact that I too would get a positive hydrogen breath test- because of the damage done by Crohns.

So my question is- have any of your children ever had a negative result on the Fecal Calprotectin test or not shown WBC in their stool, etc. and then found out they DID have an IBD disease? Is it a test worth challenging?
Thank you so much. Im very grateful for any advice.
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I second the second opinion. :hug:
My 6 yr old had a long painful road to diagnosis.:( Everything was coming back normal (and still does) except the scopes. Her first GI called after the first scopes and said sorry he didn't believe me because all the testing was coming back normal. It was me pushing and pushing and pushing that got her scoped.
As to her FC results....ya they elevated a little in an active flare but not out of the normal range. Her highest was 60ish (active flare) and her lowest is under 20 (remission). A lot of people are in the 1000's but not Grace. Also her labs are always good.
What was your daughters?
Keep pushing mom!!!
 
Thank you so much Chronik, Farmwife, and Jmrogers4, this is exactly the type of info I was hoping for. To answer your questions, just blood and stool tests at this point. and yes he has been tested twice for Celiac, both negative.
we haven't done anything invasive (until doctor sees evidence of inflammation in stool he will not do that) but we've done: ova/parasite, fecal fat, giardia, pancreatic elastase, occult blood stool, celiac, CBC, TSH/T4, bone age (to see if bones were growing normally, they are), hydrogen breath test, and fecal calprotectin. All came back normal except for the HBT/lactose which was a high positive (which i suspected because I had already noticed the dairy link.) don't think they did ESR or CRP levels but am going to ask. He puts a lot of stock in the fecal calprotectin test, and as much as I hope he is right- Im think Im going to go with my gut on this one and get another opinion. Thank you for sharing your input-there aren't many people that I can talk to about this so I truly appreciate it.
 
maudmere: I am a big fan of the FC test as is our doc. The incidence of a false negative is low but no test is perfect! Add to that the fact that there are also people who test negative on Celiac blood tests but at endoscopy, Celiac can still be found.

I understand the doctor's reluctance to move to more invasive testing given the test results, however, if the patient is simply not getting better then I would think it is their obligation to search further for answers.

The risks of endoscopy are low and a lot of the kids here will tell you that the prep is not as horrendous as they thought it would be. As my younger daughters said, "I am willing to do whatever I have to do to feel better".

If you do scopes and can cross off Celiac and IBD, then you can move on to other causes and are that much closer to an answer.

Good luck!
 
I am hoping someone knows...
Since my son is only recently diagnosed and starting his meds has seemed to help with many of his symptoms- diarrhea, fever. But the last couple days the diarrhea has come back and he woke up with a fever this morning. He also doesn't seem as hungry as the past couple weeks from the steroids
Should I be concerned of symptoms returning or possibly just a bug going around?
His abdominal pain doesn't seem worse at the moment.
Thanks
 
T just had a diarhea bug so it is possible. What meds is he on? Have you tapered the steroids recently?

Since he is newly diagnosed, I would call the doc and inform them. For my daughter they had us wait three days and that is exactly when the virus left.
 
Looking for more help on diet suggestions.. Recent diagnosis of CD for my son, started prednisone and methotrexate .. Abdominal pains from a 1-10(10 being worst pain) still staying at a 1 or 2 most of the time. We can't quite figure out what to do to bring the inflamation down more.
We have cut gluten out which seemed to help quite a bit, very little dairy, and limit sugar.
Did anyone cut sugar out completely finding this helped? He drinks a boost or ensure to make sure he's getting adequate nutrition with all the diet restrictions and those have sugar so I am concerned about cutting those out

Thanks
 
Honestly it takes time for the gut to stop sending pains signals sometimes after a long time if inflammation.
So if you were just dx you need to wait to give the med a chance to work and get his system to calm down despite food

Methotrexate takes at least 8 weeks to even reach a consistent level in the blood .
 
We tried a complete SCD diet, no refined sugar and very limited honey. Unfortunately, it made things worse. What helped our daughter was going to a 100% Ensure diet for 6 weeks. If you are waiting for MTX to start working I would ask about 100% Enteral Nutrition (Ensure or Boost type) for 8 weeks.

I hated all the corn syrup too in the drinks, but in the end it is what worked for her, for whatever reason.
 
His dr said because of the abscess in his bottom area that the nutritional drinks aren't the best route because the need to keep the inflamation down in that area, we are switching to remicade soon for that reason. I did try to initially to have him do the formula but as a 13 year old boy that felt impossible to him. Not sure I could have forced that decision on him even though it would have helped I'm sure
 
Has he tried drinking Peptamen instead of ensure/boost? Ensure and Boost are less "broken down" and may be harder to tolerate. Some kids can tolerate Ensure/Boost just fine, but others like my daughter need semi-elemental (Peptamen) or even elemental (Neocate) formulas.

My daughter's GI told her to eat very bland food when she was first diagnosed and flaring. She said potatoes are generally easy to digest. My daughter has issues with dairy but not with gluten. Honestly, it's just trial and error in terms of food. Remicade should kick in relatively fast but even that can take 3-4 infusions - 6 weeks or so.

Hang in there - I know it's easier said than done!
 
I usually just give him a boost or ensure each day for the lack of nutrients in his diet. We mainly go with a bland diet, low fiber, low dairy and sugar. We cut the gluten out completely because his abdominal pains were pretty bad. It seemed to decrease the pain quite a bit or maybe it was just coincidental. Dairy doesn't seem to bother him too much as I can tell. I'm not really even sure how to know what bothers him , is it usually pretty immediate for your daughter that she knows. It's all so overwhelming trying to figure it out.
He was not interested at all in the formula only diet unfortunately.
What is the best way to know if something is hard on their stomach? I just can't seem to tell if it's immediate or takes a day or two to tell.
 
Honestly it's trial and error - for her she has diarrhea a couple hours after having a lot of dairy (she can still eat a little). Stomach pain is generally quite soon after (within an hour or two) or eating the offending food.

You could try keeping a food diary to see if that helps you figure out what is causing symptoms.
 
Remicade sounds like a good plan. Usually starts to work fairly quickly in a lot of cases. I mentioned the Enteral Nutrition as an option to use in combo with your med choice. It can cut down on the pain. It would be hard to do it if he refused though. Maybe you can get him to do 50% of calories from drinks until the meds are working.

Otherwise we stick to bland. Crackers, but no bread. No fluid milk. Small amounts of fruit and veggies. We can't get our daughter to eat regular size meals for her age. It is trial and error as said above.
 
We can try that... He had an enormous appetite prior to now being on antibiotics fighting the infection from the abscess. The antibiotics say not to take them with other minerals that the formulas contain such as calcium and magnesium within a certain time frame so makes it tough with school and timing all the pills around that.
I really feel like giving up sometimes.
 
It's a lot of stress and unbelievably tough until something starts to work.

Maybe if you can sit down and plot out a meal or formula plan around his meds and school. I find that when I'm under a lot of stress putting things on paper and then re-arranging if necessary helps. It's less to keep in the brain.

I'm not a hugger but I'll send one your way. It's just miserable stuff. All of it.
 
I've tried the food logs to see what was hurting more but I couldn't find anything but possibly the gluten, taking it out did decrease his pain but now with the diarrhea back I don't know how to tell what else could be bothering him,
Do most moms get to stay home with kids? I have had to miss so much work which doesn't help with the stress
 
The School nurse became my best friend when we were doing the antibiotics round along with formula drinks to keep everything on track and given at the right time.
 
Yeah, it's hard! I ended up resigning from my teaching job a month after my daughter's diagnosis. She was too sick to go to school and too sick to stay home alone. I'm grateful that our family's health insurance is through my husband's job, and that we can get by without my paycheck.

The question of what to eat is also really hard; we're struggling with that right now. My daughter was on NG-tube feeding for 8 weeks, and is just tapering off that right now. We've been adding back foods from the first 2 phases of this diet, which is a less-restrictive version of the SCD diet:

http://www.nutritionj.com/content/13/1/5/table/T2

Here's some more explanation about the diet:

http://www.umassmed.edu/nutrition/healthy-eating/gastrointestinal/ibd/

She is now getting 1200 calories of Peptamen each night through her NG tube, and about 800 calories from food. The foods that she's tolerating right now include plain full-fat yogurt, honey, bananas, cheddar cheese, eggs, salmon, and smoothies made from unsweetened juice, yogurt, bananas, avocado, and cashews. She got a little diarrhea from tofu and oatmeal, so we'll wait a while before trying them again. (It's been fairly easy to figure out what she's tolerating because she's not eating that many foods; we're adding in just one food each day right now.)

She's not complaining too much about the diet right now, but I can tell she's getting bored with it. We're all hoping that if she goes into remission, she'll be able to eat a wider range of foods.
 
Thanks for the suggestions
I'm glad insurance was through your spouse. My family is covered through mine :(
I know everyone says this gets easier hoping it does soon.
Anyone have an opinion humira vs remicade?
My son decided on remicade infusions over the shot regiments and soreness of those .
I really don't know what the difference is.
 
My daughters liked Remicade WAY more than Humira. Remicade is an IV every 4-8 weeks (depending on how often your child needs it - every 8 weeks is standard). Humira, on the other hand, is a painful injection that is given every 2 weeks (can also be weekly).

My daughters have been on both and though they got used to Humira, they really preferred Remicade - they liked to take a day off from school for infusions, it was a chance to nap and watch TV. They both said that Humira burns a lot and many other kids say the same.

They both work well - in fact, some GI's prefer Remicade because there is more flexibility with the dosing which helps when you have growing kids, so I wouldn't worry about your son's choice.
 
We use Humira, but I know a lot of GI's like Remicade more because they have more experience with it. It's been used on Pediatric patients longer. There is more research.

I do stay home. I was going to bring in a second income in a few years but we decided instead to sell our home and downsize to about half what we're in so that I could continue to care for the kids myself. It does get complicated with Crohn's. My husband provides insurance but it doesn't cover her Humira anyway, so that wouldn't matter either way. We've had lots of denials this year, insurance wise.
 
Need more advice:(
Son with CD having to take heavy doses of antibiotics. Doing a stool sample this morning and stool has no scent and a lot of mucous. I haven't noticed the mucous before the antibiotics, is there something I can give him to restore the mucous and should I notify his Dr?
 
Remicade here one reason is compliance is not an issue which as a teenager can sometimes be in issue. No more worries/checking to make sure he has taken is med.
he also likes getting off school once ever other month, watching movies, etc.
We may switch to humira once he goes off to college but have a couple of years before that bridge only because the college he is currently planning on attending is a 5-6 hour drive and not an easy drive in the winter and his ped GI will continue to see him through college.
 
Any recommendations on what to do now... Changed from methotrexate to remicade but inflammatory markers were still high as of last visit for my son. He is off gluten very low dairy but I don't seem to notice more pain because of certain foods. Does the medication make it more difficult to determine what foods are keeping the markers so high? We haven't tried SC diet yet due to his reluctance.
Don't know what else we could cut out and he still gets to eat.
Feels like nobody knows what to suggest so hopefully I can get some direction here
 
How long has he been on remicade ?
It takes 6-8 weeks ( 3 plus infusions for remicade to work)
Food is not making the inflammatory markers high.
You need to give the medicine time to work .
My two cents -Waiting until he is healthier would be better to try to figure out if any foods irritate his gut .
Remicade is strong but it still needs time to work.
If your worried about nutrition
Rather than taking away food you can add en as supplement to food which will boost the remicade as well
 
Only one infusion of remicade but been on methotrexate 5 weeks or so.
Had to switch due to perianal(sp?) crohns developed.
I took him off gluten because it seemed to cause pain but I really do to know for sure with all the meds what is what.
Has anyone you know been able to control symptoms with SC diet with the perianal crohns. I hope as he gets older and matures he will be able to get off meds and control with diet
 
Methotrexate takes 8 weeks to be fully effective
Remicade is going to take a while
Perianal disease is very difficult to treat but remicade has a good success rate with that area.
If he is inflamed then your going to have to wait a while ( 6-8 weeks ) to figure out what is causing what .
Gluten may not have had anything to do with the pain
Meds need time to work .
No one can tell the future but giving the meds time to work first before changing anything else . Ibd kids need extra calories and pulling foods that may not need to be pulled just makes that harder.

Most kids I know did not have success on SCD and most have ended up losing weight.

Meds are hard to comprehend but kids tend to have more severe disease than adults since they are sicker longer
 
Also is your child currently on the meds? And can you notice something that irritates while on the meds?
I've let him have dairy and doesn't seem to cause pain also have tried gluten here and there and haven't noticed much difference so I am just wondering if that is from the meds kicking in
 
My kiddo is on humira and methotrexate
It really obvious what both him once the meds kick in
My kiddo feels good but if he eats raw carrots
He gets abdominal pain and watery explosive diarrhea within a few hours every single time.
Gluten and dairy may not even bother your kiddo
Honestly it would be best to wait and let the meds work first
 
My son was diagnosed as a celic at age 2! Now, many years after we found out that oh my God, Crohns disease can make someone celic, lactose intolerant and many more things! As a Crohns mom, seeing your son go through hell with diarrhea and pain it is so hard! Just very sad we didn't found out he had Crohns until I started to get really ill and ending a few times in the ER! Now it is going to be another test and diagnosis journey and hopefully soon he will have help and proper treatment!
 
Did you ever try the formula therapy instead of meds first? I wanted to have my son do the nutritional therapy with formula but a 13 yr old boy he was not on board with no food and I'm not sure I could have forced him and not make his life miserable.
I wish we could have so he's not on the meds
Just curious how that worked
 
Formula only is only temporary last for 6-8 weeks then you still need meds regardless.
So even if your kid did formula only he would still need methotrexate or remicade
Formula only just replaces steriods to help reduce inflammation while you wait for methotrexate or remicade to work.
My kiddo did 9 weeks of formula only but he was also started on 6-mp at the same time.
Then he did prednisone plus 6-mp to see if that would help.
Later he did methotrexate plus prednisone until the methotrexate kicked in.
That didn't work either
Finally he was on remicade plus prednisone and that worked so he was able to wean the prednisone .
He also continued to drink formula as a supplment the entire time
So diet really is not a fix for kids

Large majority need meds to avoid surgery and strictures :abscesses
Which is why your kiddos disease will be classified more severe .
Meds sound harsh but surgery or icu is worse .
 
It's really hard to tell until the meds kick in, We've tried the SCD diet and it seemed to help some with symptoms but when we stopped after a few months pretty much due to what MLP said he couldn't afford to lose any more weight and just wasn't getting enough calories there really wasn't a difference so maybe it was just the meds helping. We also did gluten free for about 8 months and when we added gluten back in there was no difference but he was in remission at the time.
For us once the meds had everything under control we haven't seen an issue with any foods we try to eat clean but he's a teenage boy and I know he goes out to eat usually fast food every Thursday.
For us growth/weight gain was our biggest issue as my son is pretty asymptomatic and so we really started to notice a difference 4-6 months after starting then weight and height really started to take off.
I know it's so hard to be patient with the disease as you just want them to feel better immediately but sometimes it's better to give it a little time so as not to "muddy" the waters so you know what's working if that makes any sense
 
No
abscesses , strictures etc form when the disease is more severe
Formula wasn't going to change that .
Some adults have mild disease
But most kids are moderate to severe .

Relax let the meds do their thing and soon you will have things back to normal
Remicade and other biologics tend to give you that
Normal where your kiddo doesn't hurt and looks good
 
Formula does not have a good success rate with perianal disease. Also, perianal disease can run it's own course independent of the Crohn's in other locations.

My daughter recently completed 6 weeks of exclusive enteral nutrition while waiting for the methotrexate to get to therapeutic levels. This brought her fecal calprotectin (the only inflammatory marker that works for her) to normal levels. We introduced some food (first 3 weeks of 20% then another 3 weeks of 50% food). Inflammation returned. Returned even though methotrexate had 12 weeks to build to therapeutic levels. For her it seems she would need EEN to stay in remission and this is just not feasible. Kids need to eat at some point. We are probably going to have to escalate meds in some way, shape or form.

My older daughter is on Remicade and like everyone has said, once her inflammation was under control, no food issues. BTW - it took 6 months for Remicade to get her to full remission and we had to add EEN to her treatment to get her there...we had previous tried steroids and she was declared steroid dependent.
 
No, you haven't done anything wrong. When faced with this mysterious disease we simply have to make choices, and see what happens, and that is harder yet when you make the choices for someone other than yourself.

We did 6 weeks formula only - twice. Same as other parents here, as soon as we started to bring food in - and not just any crummy diet - specialized diets....for us she was bleeding again within two weeks. What the formula is good for is replacing steriods, as MLP pointed out. Or for supplementing to help the meds work better or improve growth.

We finally went to biologics, for us Humira, and she is doing so well. She can eat a varied diet, and truthfully at this point there isn't much we have to avoid. If you get through the agony of choosing to put your child on a serious medication, then you may see some amazing results.
 
Misty triplett said:
Thank you
I've been wracking my brain thinking I've done everything wrong
Click to expand...

We've all been there, mommy guilt is the worse but it's not anything you've done or haven't done and you can only make the best possible decision based on the facts you are given at that time and your own beliefs.
I thought my son wasn't that bad off and putting him on biologics was admitting that he was really sick and I fought it for a long time thinking that some small change would bring on the remission, SCD, gluten free, dairy free and I had to take that journey before I could admit that nothing was working and we had better try something stronger.
I turned out that was what he needed which of course brings about a whole set of new guilt about why did I fight so hard against it. To see him truly thriving and not sparing a thought to his disease except for once every 8 weeks or if we go to the movie and he wants popcorn (I still can't let that one go - I've been too afraid to let him try).
We all want our children to be well with the least amount of drugs. Even having dealt with hubby's Crohns for 15+ years when son was diagnosed and new drugs were required I still had a hard time since it was my child and I was making these decisions for him.
 
Yes it is very difficult to make these decisions for another persons life. I still feel like it's a shock every day that this exists. I had never even heard of the disease prior to my son being diagnosed a little over a month ago.
Life can change over night just like that.
I appreciate all the advice because like I said this is a new word to my vocabulary and now I'm trying to learn more than I ever wanted to know.
Prayers for all
 
It will get better
First month I cried a lot
3.5 years later things are good and most kids don't even know DS has crohns
Just give your self time
First year is the hardest
 
my little penguin said:
It will get better
First month I cried a lot
3.5 years later things are good and most kids don't even know DS has crohns
Just give your self time
First year is the hardest
Click to expand...

I can't wait for the day... I cry everyday two months later.
There is so much info out there and it's so overwhelming.
Have any of you thought about fecal transplants or the anti MAP therapy?
My sons GI is heading much research going on with fecal transplants currently his 2nd trial is going on. My son can not be part of this trial due to the abscess that excludes him so I hope this new research will bring new options or cures.
I asked the GI opinion on the Anti MAP therapy and he said once the antibiotics stopped symptoms returned.
With all the information out there I feel like I'm going in circles.
 
There is SO much research out there and it's overwhelming but also exciting. I think our kids have more hope for the future with managing this disease.

Are you at Seattle Children's? They seem to be one of the hospitals in the forefront of what would have been considered alternative therapies that are up and coming.

Don't fret if he's excluded at this point. That means you'll have more information if it's available later on. The GI will give you the best options he or she has and then also offer you an opinion on which you should choose for your son. If you have to go through the med ladder you'll know soon enough what will or won't work. To answer your question about the fecal transplants, I gave it some thought. But I did read some terrible stories about perforations and hospitalizations after home transplants. That freaked me out. If if were available in hospital, I might consider it if she were a good candidate. AntiMAP therapy concerns me because in my head, if not in reality, antibiotics have seemed to hurt, not help, her Crohn's.

I think one of the big psychological hurdles is realizing you need to know all of this information, but in the end your options will be straightforward and you may not even have much choice. That will be doubly true if he ends up in hospital.

I cried off and on until she was on a med that actually made her life better. It took a year for us to get to that point.
 
Pilgrim said:
There is SO much research out there and it's overwhelming but also exciting. I think our kids have more hope for the future with managing this disease.

Are you at Seattle Children's? They seem to be one of the hospitals in the forefront of what would have been considered alternative therapies that are up and coming.

Don't fret if he's excluded at this point. That means you'll have more information if it's available later on. The GI will give you the best options he or she has and then also offer you an opinion on which you should choose for your son. If you have to go through the med ladder you'll know soon enough what will or won't work. To answer your question about the fecal transplants, I gave it some thought. But I did read some terrible stories about perforations and hospitalizations after home transplants. That freaked me out. If if were available in hospital, I might consider it if she were a good candidate. AntiMAP therapy concerns me because in my head, if not in reality, antibiotics have seemed to hurt, not help, her Crohn's.

I think one of the big psychological hurdles is realizing you need to know all of this information, but in the end your options will be straightforward and you may not even have much choice. That will be doubly true if he ends up in hospital.

I cried off and on until she was on a med that actually made her life better. It took a year for us to get to that point.
Click to expand...



Yeah his GI is at children's in Seattle and he really seems to push alternative thinking to treatments, I am thankful for that as there is research being done but very tough that it takes so long as people are suffering.
I know we all want out normal lives back and want it soon.
It's tought when you feel no control and backed into the only options at the time to treat our kids
 
Yep
Btdt
Confirmed crohns many times over for DS
Gi and rheumo love getting the gene test results
Sorta explains DS more
 
Have any of you considered for your child a time when you may try no meds and a raw veggie/juice diet? Or elimination diet?
I know as a child it's tough because they need to grow, I would love a time with no meds:(
 

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