Fecal calprotectin

[GirlwiththeCurl]

I feel a little funny posting here, because my daughter's symptoms are so mild, and we have only just gotten our diagnosis, and the liver problems seem to be what the doctors have keyed in on. Also, I have not been supporting others, with the feeling that everyone else is so much more knowledgeable than I am. But I had better start, because I will probably stick around asking questions. ☺

So L's liver numbers have obligingly gone down into normal range, which the doctor told me wasn't likely to happen with her PSC. So clearly the azathioprine is doing its job with the AIH. However, she has continued to have diarrhea since we started weaning her off Prednilosone, and lately had complained about stomach pain during meals again. I talked to the nurse about it twice, and the doctor has now ordered a fecal calprotectin and a test for C-diff. I feel sure it is not C-diff, even though I have no experience with it. (Now that I have read about all your kids' experiences with C-diff, I think L would be a LOT sicker of that was the culprit). I am curious to see what the fecal calprotectin will show. L's diarrhea is only twice a day and not too urgent. But still! Not normal, either.

L has had a great beginning of school, and I am not excited about the possibility of increasing her Prednilosone again, because she was so wild at the beginning on her high dose, which wasn't even that high. (She had some issues in preschool and kindergarten with self control and appropriate behavior, so I am kind of sensitive to this... I may need to grow a thicker skin). But I am even less wild about letting her diarrhea continue without knowing if her colon is okay. So yay! for a fecal calprotectin test.

 

[Maya142]

Definitely don't feel bad about posting!! There are parents on here with kids who are very sick and some with kids in remission (and everything in between!).

When my daughter had CDiff, she was going 10-20 times a day and had very watery diarrhea. That said, all kids are different and so it's a good thing your GI is checking for it.

Azathioprine does take a while to kick in, so it's definitely possible that her symptoms are returning because you're tapering Prednisone. Unfortunately, there's not a whole lot you can do while you wait for it to work, except probably increase the Pred again. How long has she been on Azathioprine?

Are your daughter's teachers aware of her situation? Does she have a 504 plan? I would just let them know her behavior isn't her fault if you do have to increase the pred.

I'm sure others will chime in soon with more advice.

 

[crohnsinct]

Please do not worry about giving advice or support. You are new to all this. Cut yourself some slack and get your bearing. Besides, that's what us old timer's (quiet farmwife) are here for.

Hopefully the fc test will give you answers and the GI will have a good plan but as Maya said, I think it is still early for the aza to be working on IBD so if you do find she has IBD you may find yourself increasing the prednisone a bit until the aza can take hold.

 

[my little penguin]

Big hugs
Yes some of us (Cic) are older than other
But ask away -
Pred can be ok the second time around and not as bad
But always tell the school nurse and send ccfa brochure to the teachers

 

[Mehita]

Could her dose of Aza need a little increase? Better for her symtoms but not high enough to make her liver unhappy?

 

[kimmidwife]

I second the others. Please feel free to post. I hope the Aza kicks in soon and she gets to feeling better.

 

[GirlwiththeCurl]

I finally got the orders for L's stool tests (mailed because our local hospital always wants paper orders for some reason), but L stopped having diarrhea in the meantime. So, yay! But I feel kind of silly for not waiting a little longer. She has been on the azathioprine for almost eight weeks now, so maybe it is building up enough to keep the IBD down. I think I just thought that because it helped lower her liver numbers so quickly it would also work in her bowels quickly, even though you all reminded me it takes time to build to an effective level.

In other news, I got a call from the liver nurse today asking if I knew about L's appointment on Monday, which I didn't know anything about! The doctor, now back from maternity leave, asked the scheduler to make L an appointment, but the scheduler didn't call me. I am not quite sure if this is just a check up, or if it is in response to my concern about L's diarrhea. It will be good to have a face to face conversation with the doctor who actually looked at L's biopsies, in any case.

 

[crohnsinct]

Never feel silly! This is your daughter! You are not a medical expert nor a fortune teller. You have no idea what is significant, what will resolve itself etc.

Do the test anyway! The information will be good to have and provide a good baseline for where you are and how things are changing down the road.

As an aside...the hospital couldn't scan the orders in and email them to you? That is still paper and provides a trail etc.

 

[GirlwiththeCurl]

Can they do the fecal calprotectin test on formed stool? I thought they only did it for diarrhea.

 

[GirlwiththeCurl]

And that's a great idea about seeing if they can email me the orders. I am going to ask if they can do that if (when) it comes up again.

 

[my little penguin]

C diff is only diarrhea
Fecal cal can be on any type is stool

 

[DanceMom]

FWIW the only fecal cal sample I've turned in that was raised....looked completely normal! The ones that looked like alien sludge...those came back in the 10-40 range. Definitely do the test so that you know where you stand.

 

[GirlwiththeCurl]

Thanks, everybody! I will definitely go ahead with the calprotectin test.

 

[GirlwiththeCurl]

Quick update: we got the sample in for fecal calprotectin. L's appointment yesterday was just a liver follow up, and everything looks good. They did a hepatic panel and everything was in normal range. If the fecal calprotectin test is normal we will wean prednisone again.

Also, she has gained seven pounds since April. This is amazing, considering she only gained two pounds between her fifth and sixth year well visits. It is all muscle, too. She still hasn't put on height, though.

 

[GirlwiththeCurl]

Ack! I missed the call from the nurse! And she left a voicemail saying that the FC is elevated, but not hugely elevated, but didn't give me any numbers. I do like to have actual values. Anyway, the doctor has prescribed Flagyl for two weeks (??). But we are supposed to go ahead and decrease the prednisone again.
What's the scoop on Flagyl? I guess I have sorry of heard in passing about using it, but I don't understand how it is supposed to work.

 

[Maya142]

It's an antibiotic that has anti-inflammatory properties.It works well for many kiddos. My daughter was very nauseous on it, but it did work well for her. It tastes awful (even the pill).

Many parents say weight comes before height for their kids. Glad she's gaining well!

 

[GirlwiththeCurl]

Oh, boy, nasty-tasting medicine. More bribery to come.

Thanks, though.

 

[my little penguin]

Weight 6 months before height as a rule

Ds did flaygl twice
Made everything taste bad
It worked some but the minute he went off it
Yep back to the same problem but he is tricky

 

[my little penguin]

We wrapped the flagyl in a piece of fruit roll up that helped
Get the docs ok
First

 

[Maya142]

The pharmacist suggested sour tasting candy or a lifesaver right after taking the pill. It does leave a bad taste in your mouth (M said "metallic") - bad enough that she stopped eating (the nausea didn't help).

She only lasted 10 days of the two weeks she was supposed to be on it. However, like with any med. all kids are different and hopefully your kiddo will be absolutely fine.

It really did work despite the side effects. Fingers crossed for you!!

 

[GirlwiththeCurl]

The doc prescribed liquid. I am not sure if the dosage just doesn't work with the dose the pills come in or what. I know she should be down for pills when possible.

But I may wrap her prednisone tablets in fruit roll ups. That is a great idea!

 

[GirlwiththeCurl]

I have been giving her Hershey's Kisses after each prednisone to cut the bitter taste.
I guess we will see how palatable the liquid Flagyl is.

 

[my little penguin]

Honestly I would ask for pills..
I know our Gi sometimes forgets that Ds can take pills or that pharmacy didn't carry that dose so they asked for liquid
We had to call three or four pharmacies to get the right dose of the pill .

 

[GirlwiththeCurl]

This is amusing: I just listened to my voicemail again. The doctor has prescribed 149 mg of Flagyl the times daily. 2.97 ml. The nurse seriously left me a message saying to give 2.97 ml of Flagyl three times daily.

She did say afterwards that 3 ml would be fine.

 

[Maya142]

:lol: Well if she can swallow pills then I would bet that the pills taste better than the liquid. They're not huge pills if I remember correctly...

The hershey's kiss idea might work. My daughter doesn't like sour candy like the pharmacist suggested so we ended up giving her chocolate. It did help!

 

[DanceMom]

Flagyl works great for my girl. She takes pills and never complained about the taste. The only downside was having to take it 3x a day. Good luck!