Calprotectin levels in nearly 6 year old

[mum a]

Hi
would be really grateful for some chat
my youngest son has recently been diagnosed with crohns over the summer and started with obvious symptoms last Easter (blood). However my middle son has had bowel troubles his whole life (born with lymphangioma, surgery, chronic diarrhea, food restricted diet). we see the same dr for both of them and she suggested checking calprotectin level in my middle son too, although colonoscopy was negative for crohns last nov. His level came back as 90 and normal being <60. i know this isn't very raised my other son was 650! but it IS raised, what else could be causing this high level?

 

[Cross-stitch gal]

Hi! I'm sorry that I really have no advice to give on this matter. But, I did find a previous thread about your challenge in our Parents of Kids with IBD forum. I'm hoping that this might help a little for you. Sending hugs your way. :hug:

http://www.crohnsforum.com/showthread.php?t=56856

 

[Holly95]

Isn't calprotectin a sign if bowel inflammation? I'm having my levels tested also and find out the results hopefully this week. I'm pretty sure calprotectin only responds to bowel inflammation though so it has to be that doesn't it?
Just because a colonoscopy proves negative doesn't mean your middle son doesn't have crohns since a colonoscopy only reaches the ileum I think? My surgeon did explain this to me. I'm sorry I can't be of more help, I'm only learning about this myself at the moment so I'm very new to it all

 

[Clash]

It would depend on how old you middle son is as to whether that was elevated or not I think.

Here are a couple of reference ranges for fecal calprotectin levels I found:

2–9 years 166
10–59 years 51
≥ 60 years 112

Here is an article describing the possible meaning raised fecal calprotectin levels:

Fecal calprotectin reliably distinguished IBD from functional gastrointestinal disorder [12,13] and correlated well with IBD disease activity [14]. Increased levels have also been described in colorectal neoplasia [15], microscopic colitis [16], bacterial diarrhea [17], after the use of non-steroidal anti-inflammatory drugs [18], in peptic ulcer [19], and gastric cancer [20].

source

So if your middle son is under 10 then the normal reference range is higher for him and his would be normal.

I've read on here and in other articles that most GIs are comfortable with IBD patients having levels below 150 and of some even being comfortable with below 300)

My son's GI doesn't seem to get overly concerned with 150 but might tweak medication. But my son's highest level has been 1700, which indicates a flare so that puts it in perspective for the GI. Also when my son had a level of 300 he had very little inflammation, which was confirmed by scopes done on the same day.

 

[mum a]

thanks, maybe the lab didn't post the paediatric values with the result, it seems it might be an ok value as he is 6, still doesn't explain anything though! thanks for commenting, if anyone has been told different i'd love more feedback

 

[Clash]

I'm going to tag MLP into this thread she could have some experience with this or more info.

 

[Mehita]

Has he been tested for Celiac Disease? Some studies indicate that an elevated fecal cal can indicate Celiac, particularly in children.

http://www.ncbi.nlm.nih.gov/pubmed/23161294

 

[Mehita]

Clash - to tag I believe you need to type out MLP's full name.

Tagging my little penguin.

 

[Clash]

Ahhh...thanks Mehita that didn't occur to me!

 

[Sascot]

When my daughter's came back slightly raised at 70 once, they told me it was nothing to worry about and unlikely to be IBD (they didn't give me any reasons why it might be raised though)

 

[my little penguin]

DS was eight when he had his first fecal cal . It was 87 so normal for a normal kid.
Fecal cal needs to be above 150 for little kids .
But it only indicates inflammation in the gut but not what kind of inflammation many different Gi disorders can cause inflammation .

 

[mum a]

thanks all, its with his brother's history it had me worried, that and the lab report says normal is 65, but googling about i see for little ones its higher. coeliac screen is fine, he has had numerous diet changes, medications, couple of scopes etc. something is going on, and how can i have 2 children with chronic bowel troubles that are unrelated!!

 

[mum a]

Hi me again, my son who DOES have confirmed crohns is 3. His original calprotectin was 650, it went down to 154 after elemental diet but is now 1800 after introducing food, very slowly. no symptoms apart from constipation, then slightly loose very occassionally and a bit frequent (4 times) and achey knees. i'm guessing this is a flar up but why can't i tell from his poo!

 

[Farmwife]

mum a your not alone. Grace has NEVER shown a flare in her stool.

HUGS

 

[mum a]

thanks
1800+ sounds really high to a newbie like me, any thoughts?

 

[Jmrogers4]

Yes 1800 is high. Is he on any other meds after the elemental diet? Most studies have found once food is reintroduced inflammation returns unless there is a maintenance medicine in place.

 

[kimmidwife]

1800 is pretty high. How are they treating him besides the EN? Usually they start the kids on a maintenance medication.

 

[CarolinAlaska]

Not all Crohn's is diarrhea. Be glad for normal stool! It all depends on where the inflammation is...

 

[mum a]

he has been on sulfasalazine since elemental diet started, they are increasing the dose, i hope thats enough, but don't know how to tell if its working wonder if they will want to try something else, but what and i worry about the side effects, the elemental diet worked, will they do that again? that was tiring as he was tube feeding, but it also is relatively risk free.......

 

[Sascot]

That result does sound high. My son's was 1650 when diagnosed. If you are willing to try another EN, it would definitely be worth it. Hope the meds increase helps, I guess another calprotectin is really the only way to tell if it works.

 

[mum a]

thank you everyone, your replies are so quick really helps to not feel alone, i'm feeling a bit defeated so thats much needed

 

[my little penguin]

Hugs
Sulfasalazine is similar to 5 ASA 's . Most studies done on kids with crohn's have shown it typically is not enough when taken alone to control crohn's.
As far as side effects - remember those are potential side effects
Not everyone gets them in fact very few have any side effects at all.
The problem is under treated crohn's can have devastating results even if your not seeing the damage it's doing on the inside .
Simple drugs such as Tylenol or amoxicillin have scary risks but doctors just don't point them out to the average parent.
Tylenol and amox both can cause Steven Johnston syndrome which can be fatal.
Tylenol liver damage and skin rashes .
But for most these are worth the risk .
Think of it this way
Risk of dying for anyone under 14 in the US
1 in 250 from a car accident
1 in 1000 from swimming
2 in 10000 from T cell lymphoma ( not Ibd kids )

Taking remicade plus an immunosuppresant like 6-mp
Risk of T cell lymphoma
4 in 10000

Risk with just remicade alone is not known.

We take risks everyday with our kids without even thinking
How much of a risk things are.
But the benefits of seeing your child healthy and knowing
You are keeping as much of their intestine as healthy as possible for as long as possible until less scary drugs come along is priceless .
It makes the scary drugs look like baskets of kittens .

That said my child takes en in addition to food along with humira .
This gives him the edge most Ibd kids need so he can gain weight and grow like a normal
Child regardless of the disease activity .

En does not need to be elemental for a supplement .
Some use boost kids or pediasure
We use peptamen jr . There is also peptide .
So no tube needed to get them to drink.

Good luck