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09-01-2014, 05:06 PM   #1
Jenr1016
 
Join Date: Jun 2014
Location: New Jersey
Stool Calprotectin

My son was diagnosed with Crohns in April. He has had a good summer just some issues here and there but good overall. Just took him a few weeks ago for labs. Just got results and they say his stool calprotectin is out of range at 189.2. Can anyone tell me what this means for him. We have an appt at GI tomorrow but wanted to see if its something I should be worried about.

Thus far he has never had any stool tests come back elevated so not sure what it means.
09-01-2014, 05:15 PM   #2
DJW
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Hi.

It points to inflammation. Try and relax tonight. The doctor can address it tomorrow. Its important to look at the big picture (IMHO). The fact he's feeling good is a plus.
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09-01-2014, 05:28 PM   #3
Catherine
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What need to know is whether the test has been performed before. If the number is trending down they mostly like do nothing.

Hang is there.
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Catherine
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)
09-01-2014, 05:31 PM   #4
Jenr1016
 
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Location: New Jersey
Its always been in normal range. He has had 3 done since he was diagnosed and they were always normal. Thats why I am nervous and bc he has been having some issues the last few weeks. Nothing major just a lot of nausea. We call them episodes but they come and go. Also he has not gained any weight since dx. He eats like a horse too.
09-01-2014, 05:42 PM   #5
Jmrogers4
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Did it give you what normal range is? Where is his CD located? If he has not gained weight it could point to inflammation as well. My son's labs are always normal except calprotectin when he has inflammation and even that is not very high above normal range.
Sounds like maybe some investigation to see if simmering inflammation is going on. I hope its just a blip and everything settles back to normal quickly
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
09-01-2014, 05:58 PM   #6
Jenr1016
 
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He has it in his stomach and small bowel. It just says out of range high.
09-01-2014, 06:17 PM   #7
Jmrogers4
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I always ask for the actual number that way you can see trends.
I've heard of 50 and below being normal for one version of the test. The one my son has is 169 and below is normal. That is why I asked for normal ranges and the number. If they are using the test where 50 is normal then he is quite high but if it is the 169 one then he would not be very far and maybe just a little extra help is needed to get him to remission, kwim?
What meds is he currently on?
09-01-2014, 06:40 PM   #8
Maya142
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Yeah the test my daughter has recently had 162 as the cut off (from Quest) whereas every other time we've done fecal calprotectin, normal has been below 50. My daughter's GI said she would not worry too much if it was under 300.

M's calprotectin tends to be on the lower side (has been anywhere from 36 to 486), but it is the only test that will show inflammation (bloodwork is always negative). In her case, her GI looks at the trend, and what her "normal" is.

Some kids have fecal calprotectin that is over 1000!
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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
09-01-2014, 06:44 PM   #9
Jenr1016
 
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Okay well I fell a lot better now. He is only on Pentasa and some vitamins.
09-01-2014, 06:53 PM   #10
Clash
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Yeah my son uses the calprotectin test that below 50 is normal. His has been as low as 48 and as high as 1700(when in a severe flare).

I, on the other hand, was having some GI trouble(i don't have CD) and my test used the below 167 or something close to that as normal. So different labs vary in their normal reference range. Good luck.
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Clash
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
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PAST MEDS: remicade, oral mtx, humira
09-02-2014, 05:17 AM   #11
Sascot
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My son uses the Calprotectin as a indicator of his Crohns. All other labs are normal. I didn't realise you could have a normal calprotectin and have Crohns diagnosed. If your son's numbers are heading up then it points to some inflammation, but I don't think our docs start worrying till around 200 and above.
09-02-2014, 06:01 AM   #12
Jenr1016
 
Join Date: Jun 2014
Location: New Jersey
When my son was diagnosed he was very sick for two weeks losing weight, etc so they did bloodwork and his asca was high. From there dr did tests and his pill cam study found lesions, etc. I don't know that it has always been normal but I have never had my GI ever say it wasn't. I am gonna ask for all his past numbers when I go today.
09-02-2014, 09:11 AM   #13
Jmrogers4
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Ask for the reference range as well. Many of us here keep a simple spreadsheet that we put lab numbers so that we can track trends. For example my son's ESR has never been above the mark for normal which is 15 on his labs but I know from tracking that normal for him is about 6-7 and when he starts getting up in to the 9 range we have problems.
I love his GI and he is fantastic but I noticed the trend before he did and brought it to his attention but he sees hundreds of kids and I only have to track one. So know he doesn't look at Jack's labs and just see them in the normal range and think okay but he actually looks at the number.
One other thing to consider is Pentasa is generally not considered strong enough for many of the kids but being the most mild of the drugs a lot of GI's begin with it in the hopes that it will help but can't hurt.
Good luck today. Keep us posted.
09-02-2014, 11:46 AM   #14
Jenr1016
 
Join Date: Jun 2014
Location: New Jersey
Ask for the reference range as well. Many of us here keep a simple spreadsheet that we put lab numbers so that we can track trends. For example my son's ESR has never been above the mark for normal which is 15 on his labs but I know from tracking that normal for him is about 6-7 and when he starts getting up in to the 9 range we have problems.
I love his GI and he is fantastic but I noticed the trend before he did and brought it to his attention but he sees hundreds of kids and I only have to track one. So know he doesn't look at Jack's labs and just see them in the normal range and think okay but he actually looks at the number.
One other thing to consider is Pentasa is generally not considered strong enough for many of the kids but being the most mild of the drugs a lot of GI's begin with it in the hopes that it will help but can't hurt.
Good luck today. Keep us posted.
Yes I have been hearing that a lot about Pentasa. When he was diagnosed he was mild so thats where we began. I was really scared about stronger meds so we just decided to try this approach first. He really was doing well for the most part. He has some bad days but overall he is a very active 11 year old happy boy. I am just scared about what is to come with this disease so we are enjoying the good.

I will def talk to the dr about his past numbers so I can keep a record.

Also trying to decide if I should go for a 2nd opinion. I do love my GI but just think we should go to CHOP for another opinion.

Thank you all so much.
09-02-2014, 06:23 PM   #15
my little penguin
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Get a binder or notebook or PDF of all blood work all test results including pathology reports /MRI etc...
Keep track of all meds tried dosage -start and stop date .
Rising fecal cal is one indication things ( typically inflammation ) is not under control.

Drugs are scary especially since your given all the possible side effects - ped never give you this on Tylenol ( it can kill or do liver damage as well).
They also don't tell you how risky car rides are for your child ( risk of dying 1 in 250)
My point is we take risks everyday to give our kids a better quality of life without thinking about it.
The known is under treated crohn's can cause very high known risks some times silently with very little symptoms .

A second opinon never hurts.

Simmering inflammation can cause a slew of issues .
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09-02-2014, 07:11 PM   #16
Jenr1016
 
Join Date: Jun 2014
Location: New Jersey
Okay so my GI wants to put my son on 6mp which scares me to death.

His calprotectin from April was in the normal range.

So what do you guys think. He is suppose to go for bloodwork tomorrow and start next week if bloodwork looks good.
09-02-2014, 07:15 PM   #17
Maya142
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If you're uncomfortable, getting a second opinion is not a bad idea. We went to CHOP and really liked it! Most kids do eventually have to go on to either an immunomodulator like 6MP/Imuran or Methotrexate or a biologic (like Humira or Remicade). Some kids (like my daughter) are on both.

In her case, her GI wanted to treat her aggressively and she already was on biologics because she has juvenile arthritis, so we switched to Remicade to treat both diseases. By the end of the year, she had mostly clean scopes!
09-02-2014, 09:34 PM   #18
my little penguin
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DS was on 6-mp - scary side effects a few more blood draws but easy daily pill.
There are very few Ibd drugs period
So getting a second opinon is good but it won't change the drug options.
It goes in tiers
5-ASA
Immunosuppressants
Biologics

Some docs start at the top ( less risk of surgery and complete healing )
Some start at the bottom and work their way up.
2nd tier is 6-mp and Mtx .each has its pros/con
Teenage boys have less risk with Mtx generally.

Realize risk benefit
Little risk .. But lots of benefit -keeping his gut has healthy has possible and avoiding surgery as long as possible .
Since you can live without a large intestine but you can not live without a small intestine.

DS 's liver did not like 6-mp but they monitor it very very closely .
So the med was pulled before there was any issue .
09-02-2014, 09:44 PM   #19
Jenr1016
 
Join Date: Jun 2014
Location: New Jersey
Yes I keep hearing that MP6 is a risk for boys but my GI isn't a huge fan of mtx. He said it hasn't been around as long and I guess he trusts MP6. I jut really don't know what to do. I just faxed my paperwork to CHOP but they already said I would not get an appt till October and my dr wants him to have labs tomorrow and start meds next week.

I am just so nervous bc he isn't feeling terrible. He has some bouts of nausea but they come and go quickly and he is a very active kid and eats like a horse. I know this disease is silent obviously since his calprotectin was normal in April and now high and he has been on Pentasa since April. Just scared of the side effects and him not feeling well on these meds. It scares me too that his white blood count will go down and I keep thinking he will get sick all the time. AHHH I just don't know.

I just got a copy of his pill cam report from April which showed he had three ulcers in his small intestine and one was bleeding and inflammation so I def know something is going on in there.


DS was on 6-mp - scary side effects a few more blood draws but easy daily pill.
There are very few Ibd drugs period
So getting a second opinon is good but it won't change the drug options.
It goes in tiers
5-ASA
Immunosuppressants
Biologics

Some docs start at the top ( less risk of surgery and complete healing )
Some start at the bottom and work their way up.
2nd tier is 6-mp and Mtx .each has its pros/con
Teenage boys have less risk with Mtx generally.

Realize risk benefit
Little risk .. But lots of benefit -keeping his gut has healthy has possible and avoiding surgery as long as possible .
Since you can live without a large intestine but you can not live without a small intestine.

DS 's liver did not like 6-mp but they monitor it very very closely .
So the med was pulled before there was any issue .
09-02-2014, 09:49 PM   #20
my little penguin
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The nice thing about 6-mp or Mtx is both can be stopped and started easily or switched for one another.
6-mp takes about three to 4 months to work
Mtx about 6-8 weeks .
The 6-mp TGGN test etc..,
Needed to determine if he has enough enzyme to tolerate 6-mp.

Takes at least a week if not two to come back .
09-02-2014, 09:51 PM   #21
Jenr1016
 
Join Date: Jun 2014
Location: New Jersey
The nice thing about 6-mp or Mtx is both can be stopped and started easily or switched for one another.
6-mp takes about three to 4 months to work
Mtx about 6-8 weeks .
The 6-mp TGGN test etc..,
Needed to determine if he has enough enzyme to tolerate 6-mp.

Takes at least a week if not two to come back .
Thank you so much for all your help.
09-03-2014, 09:59 AM   #22
Mehita
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I was scared of the meds too and kept fighting the GI on starting 6MP because while my son had some bad days, he was mostly good. Sound familiar? Fast forward about 15 months to his first ER visit.

Turns out he had simmering inflammation going on for a long time. During that time a stricture formed in his small intestine from built up scar tissue. Now he was having some good days, but mostly bad days. He had to have 10 inches of his small intestine removed at the ripe old age of 12.

In retrospect, I see now that his Crohn's' had been silently active and our delay in getting him on meds obviously made things worse. I completely regret not starting him sooner. As it turned out, 6MP wasn't strong enough for him anyway and he had to jump to Remicade to achieve remission. I wish we'd gone with Remicade from the beginning. He never seemed THAT sick. Turned out he was even sicker than we thought.

My point is, do your research to answer your questions, but also know that doctors don't tend to put kids on these drugs lightly. If the GI is suggesting it, please really consider it. Don't wait like we did until DS got to the point of being completely miserable. It's such a hard disease, sometimes invisible, and sometimes being as close to our kids as we are, we don't always see how they're deteriorating. I didn't see that one bad day a week had turned to two, then later to three... know what I mean? I'm not saying that you're doing that, but if I can help any kid from going through what DS did...

I hope you find answers soon and are able to move forward.
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
09-03-2014, 10:42 AM   #23
Jenr1016
 
Join Date: Jun 2014
Location: New Jersey
Wow sounds just like the boat I am in. He is having one bad day a week and not even that bad just some nausea and then it passes. The thing that scares me is he has been on Pentasa since April when his stool calprotectin was 50. Now after 4 months on Pentasa, its 190. Thats not really high but for him its indicating something. I know this is the next step but I am scared that he will be sicker on the meds.

Now just have to decide if we will start meds or wait for a 2nd opinion which could take a few months to get that appt. I am taking him for the bloodwork today to get the ball rolling.

Thank you for your reply its nice to have someone in a similar situation to talk with.

I was scared of the meds too and kept fighting the GI on starting 6MP because while my son had some bad days, he was mostly good. Sound familiar? Fast forward about 15 months to his first ER visit.

Turns out he had simmering inflammation going on for a long time. During that time a stricture formed in his small intestine from built up scar tissue. Now he was having some good days, but mostly bad days. He had to have 10 inches of his small intestine removed at the ripe old age of 12.

In retrospect, I see now that his Crohn's' had been silently active and our delay in getting him on meds obviously made things worse. I completely regret not starting him sooner. As it turned out, 6MP wasn't strong enough for him anyway and he had to jump to Remicade to achieve remission. I wish we'd gone with Remicade from the beginning. He never seemed THAT sick. Turned out he was even sicker than we thought.

My point is, do your research to answer your questions, but also know that doctors don't tend to put kids on these drugs lightly. If the GI is suggesting it, please really consider it. Don't wait like we did until DS got to the point of being completely miserable. It's such a hard disease, sometimes invisible, and sometimes being as close to our kids as we are, we don't always see how they're deteriorating. I didn't see that one bad day a week had turned to two, then later to three... know what I mean? I'm not saying that you're doing that, but if I can help any kid from going through what DS did...

I hope you find answers soon and are able to move forward.
09-03-2014, 11:01 AM   #24
Mehita
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It's a tough decision. DS was on Pentasa during that 15 month period too. A benefit of switching for us was that he went from 8 pills a day to just the one (actually it was half a pill of 6MP).

Why do you think your son will be sicker? From being immune suppressed?

If it's any consolation, DS was no worse off than anyone else in the family. No side effects or issues. It simply just didn't work even though he had adequate levels in his system.
09-03-2014, 11:34 AM   #25
my little penguin
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DS was dx at age 7 ( second grade ) started in 6-mp after a month of pentasa.
He went through all the meds and started remicade at age 8.
He has finished 2nd, 3rd, and 4th grade on immunosupressants or biologics .
No extra cold etc...
These meds only make them more suspectible to opportunistic infections ( chicken pox , flu ..) not the average cough cold.
Just wash hands and flu shots .
Good luck
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