Fecal Calprotectin test 586 what's next?

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Johnnysmom

Johnnysmom

Joined
Oct 26, 2011
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1,334
We just moved to Cincinnati OH from Grand Rapids MI. While in Grand Rapids my son was considered in remission and his inflammation markers have been low normal. His new G.I. ordered a Fecal Calprotectin test. Johnny's results were 586 and the nurse said they like to see the number below 300. She is waiting to discuss the results with the Dr. I am not sure what they will recommend. Has anyone been through this? What did your Dr. decide? I don't really want to switch meds or go to remicade but Johnny hasn't been growing as much as they thought he would so I knew there was something else going on. Time to remove my head from the sand I guess! Any advice would be welcome.:sign0085:

No other signs of disease.
 
Sorry to hear about the faecal calprotectin test being high. Just wanted to wish you luck with whatever comes next. My son's went from 1600 to 168 and we haven't done another one since, so I'm not sure what happens if it hasn't come down. Our docs are still trying to decide what meds to give him.
I am right there with you - my head is well and truly stuck in the sand - and I am trying my best to keep it there
 
Sorry, no advice but I hope no new meds needs to be added! :ghug:

(I'm playing in the same sandpile! :))
 
:shifty:WE were in the same sand pile - but the rheumatologist made us get out

Hope your new GI comes up with a good plan and it works.
 
I don't want to leave my sandpile!!!! (I am stomping my feet) This stupid disease. I feel so bad for him. He started with stomach pain again last night.

Is 586 considered really high? The nurse said she wasn't sure if he would want to change things or not. I hope they don't' wait 6 months for another test. :(
 
I don't think 586 is really high as Andrew's was over 1600 and he was still only getting stomach pain on and off otherwise ok. However, it's definately not good since it needs to be under 50 I think. When do you see the new GI? Surely they wouldn't just leave it at that, with you getting worried about things.
 
That doesn't seem that high to me. Maybe the move and new routine has tipped his balance a bit and you could give it time. Alex was >1000 when we tested a month ago , then repeated colonoscopy and we had to add 6mp to his Humira. bleah. I think we'll re-test in a month or so. Good luck!
 
Has the nurse called back yet?

I hope the stomach pain is totally unrelated to his IBD...maybe dehydrated...stress...fatigue...excitement...Just trying to help you stay in the sand a while longer.
 
No call from the nurse but I did receive a recorded message that I need to call scheduling tomorrow!?! That will help me sleep well tonight!!! I keep thinking the result was a mistake. (See head still firmly planted in the sand!)
 
How are things going Johnnysmom?

Any further word about the faecal calprotectin?

Thinking of you, :heart:
Dusty. xxx
 
The nurse called. The Dr. has decided to do.....nothing. :angry-banghead: She said we will just wait until he gets his blood work in November????? I asked her if having an inflammation level of 586 could effect his growth and she said it could. :eek2: I don't know why this is acceptable. Meanwhile he had stomach pain last night. His pain isn't bad and it only happens maybe once or twice a week for about an hour or so. My issue is a month ago he wasn't having any pain. I am worried this will just get worse and we are going to end up on Pred again. :( Is it normal to for some people to have little ups and downs durning remission?

She said the Dr. went back and forth on his decision and they discussed it quite a bit. She wants me to call if he starts feeling poorly. She also said they have had kids come in with a fecal cal in the 2000 range and then they get the number into the 700's and they feel that is stable. I think because Johnny has no other results to compare these to they feel it may not be out of the ordinary for him. He did just gain about 2 lbs last month and his feet grew about a size and a half.

We are traveling out of the country in October and I have fear that this is when this disease will decide to rear its ugly head.

What should I do????
 
Sorry this might be short and full of typos, I'm on my phone. Ellie had levels of 944 before diagnosis and was very ill. The doctor said and the I think the lab confirmed that if you have IBD and levels over 500 it means you are headed toward a flare. With IBD they want that number to be below 200 (for someone without IBD it would be 50). I read that treatment should be stepped up above 500 to 'cut off' what's to come.

It ticks me off his dr isn't doing anything. These tests aren't done just because they are interesting or fun to look at. If the dr acted on it he could hopefully save you from a major flare. I'm going to try to find some info when I get home and I'll private message you. Maybe if you educate you dr he will act like a doctor.
 
I wouldn't get overly concerned.....my son had about the same number 590....his test was done with a lactoferrin test as well....that test is negative positive ...with negative being preferred...he was positive. Our dr said 590 is not overly concerning...he stated it was a highly sensitive test and results would swing on very little changes....he also said it could indicate "micro inflammation" in the colon which could be dealt with rather easily if necessary. His response was to test again in one month..which just happened and the 590 came down.....I don't know how far but he said if it didn't come down we would schedule another colonoscopy to attempt to discover the potential reason.....since it came down he has opted to change or do nothing....
So....don't panic....request another test next month.
Dutch
 
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I would look at the whole picture hun. He has an elevated faecal calprotectin, that on its own may have questionable relevance at that level, but he has a new symptom, stomach pain. Those two things combined would have me pushing for him to have blood work done now.

My two have the exact same CD and they have had the exact same outcome yet their presentation both physically and clinically were poles apart. As a result my philosophy now is...far better in my mind for me to proved wrong than to be kicking myself because I second guessed my instinct.

Dusty. xxx
 
Oops. I should read more carefully....I didn't see that he had a physical symptom as well......thereby making his scenario different than ours. Sorry.
 
If it were me, I would let the nurse know that you will be traveling out of the country in October and you would really appreciate doing labs now.

You might also mention that he has had some tummy aches lately.

If you are concerned about his growth, you need to chart it out over a year or two year's period of time in order to tell if there is a problem.

Can give you more advice on that if you want it.

Hope it is no big deal and he just ate too much ice cream. :)
 
Well I called the nurse today but she wasn't available so I left a message. I was going to go over our travel the tummy aches. No stomach pain for the last 5 days. The pain he had last week was very mild, literally lasted about 5 minutes. I thought maybe it was the start to something but he has had no problems since then. My question is should I request a redo of the fecal cal? Because they were only going to do blood work in November. All of his blood tests were normal in July.

I would love more advice on the growth. We see an Endocrinologist so I have his height charted over the last 10 months. They have also done an X-ray for bone age, insulin-like growth factor, serum free T-4, and TSH. They felt he was at the threshold of puberty. The Endo said he lost some growth over the past year. He felt that he would have "catch up" growth once he was well. How much he grows from here on out depends mostly on his health status. I am not sure what to expect. The G.I. thinks it could take longer for his growth to take off.

He does like ice cream.:) Unfortunately his favorite flavor is Coffee. Not so good for growing with all the caffeine.:nonono:
 
Our experience with the endocrinologist just showed that Alex is 2 years' delayed in growth, which is important and good because it's not skipped! he will catch up, but probably not instantly, more like he'll keep going after his peers stop. The key is keeping Crohn's under control through puberty to maximize his potential final height. They don't advise growth hormones or anything. Typically, you see an endocrinologist to determine why the slow growth, and we know why - from Crohn's while undiagnosed. It's frustrating as all get out to me, but it's a waiting game.
 
Our GI did repeat the fecal calprotectin after about 2 months...we have appt in 2 days but I am aware that the number did go down. He also repeated the lactoferrin test? Ask your GI why he did not also do a lactoferrin test....I'll ask Wednesday what the significance of each test is ......and why my GI uses both.
As far as growth, we too saw a significant delay in the year he was I'll....since he be ake medicated he is gaining weight, but not so much height....we are also very concerned about this at the onset of puberty.
 
Jenn- I thought our Endo would feel the same way, that he would stop seeing us once we knew Johnny's diagnosis. The growth issue was caused by the crohn's and he would let the G.I. work on the crohn's to fix the growth issue. But he still wanted us back every four months. Before and after he knew Johnny was in remission. He ran a lot of tests although never gave Johnny any sort of treatment or meds. I had a friend who's son has crohn's and saw our same Dr. in Michigan. Her son was on Pred for 3 years and was 4'9" at age 16. He finally had surgery and was kicked into remission. The Endo gave him growth hormone over the summer to kick start his growth and because if he gets sick again they want to maximize the healthy growth time he has. He grew 4 inches this summer. His case was extreme as he had refractory case and was very ill for so long.

Dutch-I will ask about the lactoferrin too. Johnny gained 30lbs since diagnosis in October. Most of it in the first 3 months while on Prednisione. His weight stayed stable after that an he has slowly gained 4 lbs since then. He really didn't grow much until April (so 7 months after diagnosis) and has grown 2 inches now since then. His feet were the same for almost 2 years. They grew a bit after diagnosis (maybe a half size) and just last month went up another size and a half. The G.I. said he wasn't surprised not to see a ton of growth 10 months after diagnosis. Our Endo felt Johnny was back on track with the annual growth average being 2-2 1/2 inches. I guess that is the goal pre-growth spurt. He said as long as Johnny was healthy he would have catch up growth. But our G.I. nurse said a fecal cal of 586 was enough that it COULD delay his growth. Durning these 10 months Johnny's body is continuing to develop. (hair etc.) His bone age at 11 years 7 months was 12 so he was not delayed in that way. My friend's 16 year old I mentioned earlier had a bone age of 11 years old. His body literally went dormant while he was sick, so he should gain that back because technically as far as growing goes he is only an 11 year old.

Where this brings me is, is it better to go on the remicade now and get the maximum growth out of adolescence and then go back on 6mp once that stops working? If 6mp was really doing it's job I would say no. But if we are still seeing fecal cal levels continually high and little growth do we consider a switch? I have been rolling this around in my head for a while knowing I need to wait and get more information. Please let me know what you all think about this. Sounds like we have all had some of the same concerns.

My little penguin- As soon as I take my daughter to school, I am reading your research. Thank you!!
 
I would be looking to change his treatment hun. The continued indicators of inflammation being present and his poor growth say to me that something needs to be done sooner rather than later.

Even growth aside, which is a biggie mind, I just don't like the thought of inflammation simmering away under treated. :hug:

Dusty. xxx
 
I agree with Dusty.

Since you seemed very concerned with growth I thought it best to couch my answer in those terms.

But growth is just a bonus.

You want his gut healthy now. His brain, heart, liver, kidneys, bones and every other part of him is developing right now and every little bit of it needs solid nutrition to grow and develop as it should.

You cannot absorb nutrients if your gut is inflamed.

And an inflamed gut grabs nutrients and resources away from the rest of the body as it tries to heal.

That's the easiest way to explain why they are not growing. It's really more complicated than that but for most kids, once you get them into solid remission they grow and they get within 2 standard deviations of their expected height. Which means they eventually get to be as tall as they might have gotten if they were healthy.

But if you wait too long and their growth plates have closed, which happens in late adolescence even in kids with Crohn's (or the vast majority of them), then there will be no or little catch up growth.
 
I agree with you both. Now hopefully his Dr. will agree. I would like another Fecal Cal to make sure that this was not just one off test. With our move, him starting a new middle school , my dad was living with us and passed away and his sister had the stomach flu about 3 weeks before he had the test. I think these all MAY have influenced what was going on with him. But if inflammation stays elevated I will ask Dr. to move to Remicade. Perhaps he will give me sound reasons not to, but at this point I need that discussion.

I am going to request another fecal cal before his November appointment and then discuss at appointment. The nurse said if he was feeling poorly at all we could move it up. Right now he seems to feel good. Hopefully we can get the Fecal Cal in October and move the appointment up then if we need to.

Thanks for all the great advice. I think this would be easier if I was making decisions for myself but deciding this for him, when he has to live with the consequences is very difficult.

I will let you all know what happens.
 
I know I've said this somewhere else on another post but just remember that we make the best choices for our children out of love with the information and understanding we have at that moment in time. We all second guess ourselves as moms but throw a chronic disease in the mix and suddenly it's 10X as bad. I'm sure your son understands and appreciates now, and he definitely will as an adult, the hard decisions you've made and he will love you even more regardless :) I told my husband the other night that based on what we are going through Ellie better pick an AWESOME nursing home for us when we are old, lol
 
They agreed to the Fecal Cal in October:dance: And let me tell you, that was no easy task. They didn't want to repeat it until February. I really don't understand why they would do the test, get a high number and then seemingly disregard the result.

Drives me crazy :ymad:
 
Johnnysmom,

I need to back up I think. I reread through this thread today and realized I made some assumptions about your son's situation that may not have been correct. So I have a few questions for you and depending on your answers my advice might change.

1. Your son was diagnosed 10 months ago, yes?
2. Was he on pred? When did he finish weaning off?
3. When did he start 6-MP?
4. Do you have copies of his labs? Are his lab values in the normal ranges now?
5. If not, what lab values are abnormal?
6. Did he have abnormal lab values at the time he was diagnosed?
7. When you talk about your son not having grown, who is doing the measuring and how often is it being done?
8. Do you have growth records from before he was diagnosed?

If you have time to give me more details like this then I and others on the board can be sure our advice or experiences match your situation.
 
Ok..had the Appt today...great appt. learned a lot.......dr was very patient with us. In regards to the lactoferrin test.....probably no need....my dr advised it is a negative ...positive test that simply states there is an issue....the fact that you have a 500plus result would indicate it would have been positive.....the calprotectin is a measurement of the scope of the issue. My dr states he becomes concerned when that number is over 1000...or if it is trending in an upward manner. In our case after two months we reduced down to 234(still about 80 higher than high norm). But the lower number and the downward trend is optimistic and he is not concerned about that portion of the labwork.......so hopefully your repeat in October will do the same!
 

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