Confusing Fecal Calprotectin Results

[kimmidwife]

Hi All!
I have not been on the forum in a while. Life has been really crazy. Good news my older daughter is doing well on Stelara. Her Fecal Calprotectin is nondetectabke for the first time ever!
My little one on the other hand is having a lot of stomach pain and joint pain again. Her Fecal Calprotectin in June was nondetectable. Her symptoms started increasing in August. We did another Fecal Calprotectin the first week in September and was 435.
Her Humira levels were perfect though.
Her doctor decided we should just recheck the Fecal Calprotectin one month later. The new result is 245.
She continues to have symptoms. Her doctor says because it went back down he doesn’t want to change her treatment at this time.
I am not sure if I should push or what.
Her disease was originally located in the terminal ileum on her original colonoscopy.

 

[my little penguin]

When was her last imaging /scopes ?
Fecal cal is just one tool
Our GI uses many tools(blood imaging scopes and fecal cal ) to determine WHY
There is an increase in symptoms and if change is needed or necessary

 

[kimmidwife]

She has not had scopes since diagnosis. Our doctor really tries to avoid putting the younger kids through scopes unless he sees a real reason for them.
She did have an MRE in April Which was normal.

 

[crohnsinct]

Fecal calprotectin is a highly variable test and can raise for reasons other than IBD. I think the fact it went down so much is encouraging and I would be o.k. with a wait and see approach but I wouldn't wait too long. I would want another fecal calprotectin in a months time to track things closely. I would also be watching symptoms.

 

[Pilgrim]

I don't really have advice just dealing with the same for second dx kid. Pain is creeping back in but calpro looks fine. He is 10. He is on 40mg Humira biweekly.
He also is getting some noticeable fatigue.
I am waiting to see how it goes for a bit. Thinking about adding 50% EN maybe to see if it helps.
But I see you have had pain since August. Is she going to school or normal activities?

 

[kimmidwife]

Pilgrim,
She is homeschooling which makes it a lot easier. She has been a lot more tired recently though.
We have an appt scheduled in exactly a month. I am going to ask him to order another FC to see if it changes.
I know disease location can really affect Fecal Calprotectin Results her disease was pretty much in the terminal ileum when she had her scopes three years ago.

 

[my little penguin]

Keep in mind Disease location and type of disease
Can and does change woth kids over a 10 year period
That’s why scoping AND imaging are important

 

[Pilgrim]

Kimmidwife,
My son also had disease in TI at scopes about 10 months ago. And also an appointment in a month...
I did take him to a family doctor today. His abdo pain is now distracting him from life. Dr. called the specialist office and got the ball rolling with early labs and stool testing. We also may do a telemedicine visit with GI tomorrow.
It is smart to do these investigations before the specialist visit. Might be something to consider with your little one.
I wish we still homeschooled. Might have to look into it again.
I hope she feels better.

 

[Maya142]

I agree - I would ask for her Fecal Calprotectin to be done again in a month or so (before her appointment). I'd also log her symptoms - when does her belly hurt, where does it hurt, what her last meal/snack was etc.

Fwiw, my daughter has had inflammation all through her colon but her TI looked worst on scopes. Her Fecal Cal also tends to be on the lower side. We have figured out that when everything is good, her FC is 20-30. When she is flaring, her FC is usually in the 200-300 range, though once it was 480.

Because we know her "normal" is so low, her GI gets concerned when her FC is over 120 -150. Normally, for IBD kids, that's pretty low. But for M, it's is 5-6x her normal.

 

[Pilgrim]

kimmidwife,
We ended up getting a telemedicine visit with GI. He is adding fcal, Humira levels testing to our other tests and will bump up our son's Humira to weekly at least until the office visit.
So, we did get help for him by starting with the gp.

 

[kimmidwife]

Pilgrim,
We did all of those tests. I am thinking MLP is right and she needs scopes. The last few days her pain is really bad again. Her last scopes were when she was diagnosed 3.5 years ago.
I am calling the doctor tomorrow and seeing if we can get in this week to see him.

 

[Maya142]

Is she on Humira weekly Kim? Even if her Humira levels are within the normal range, some kids need levels to be higher than the normal.

I agree that she definitely needs scopes. Since the MRE was normal and her issues seem to be in her small bowel, a pillcam may also be a good idea.

Is her pain usually after meals? If so, I would consider Gastroparesis if the scopes are clean.

 

[kimmidwife]

Hi Maya,
Her pain is pretty random. Sometimes in the morning and almost every night at bedtime. She is also having some bad headaches which she did the last time she flared up.

 

[kimmidwife]

Update:
So we saw the GI for an emergency appt today. He does not yet want to scope her. He wants to do a course of budesonide and 7 days of Flagyl and see how she does. Shenis also going to do the breathe test tomorrow to check her enzymes for CSID since her sister has that.
If she is not doing better by next visit then we will rethink scopes.

 

[my little penguin]

But if you do steriods and flagyl
That will muddy the waters
And you won’t know if the current med is not working
Needs upped or what is going on

 

[kimmidwife]

It is true it might but he really doesn’t want to scope her yet. He tries not to scope the smaller kids to often.

 

[kimmidwife]

I just wanted to give a quick update. After the flagyl and two weeks of entocort she was doing better. The doctor decided that her weight is up enough to raise her Humira to 40mg. After a month on the new dose we will check a fecal calp again.

 

[Maya142]

Hope the increase in Humira helps!! How much does she weigh?? And if she's been dxed 3 years, does that mean she's 10 now, or am I remembering incorrectly?

Really glad she is feeling better!! That's a relief.

 

[my little penguin]

Glad your getting a higher dose of humira
40 mg made a big difference for ds
He was 9 when he bumped up the “adult “ dose
It did take a few months at the higher dose to see a difference though
Good luck

 

[pdx]

Glad to hear this--really hope it helps!

 

[crohnsinct]

Well it seems that feeling better after flagyl and entocort is enough of a justification for a Humira increase. Glad she is feeling better. Hopefully the increase in Humira does it's thing.

 

[Pilgrim]

Upping the Humira to 40mg really helped H last December. She's been doing great for most of the year. She was around 60lbs and 7yrs old at increase.
I hope it works!

 

[Jelly loves Peanut butter]

Glad she is doing better