New here - 10 yr old with UC, worried - might need new GI doctor

[BeeMom]

Hi all. My 10 yr old daughter was diagnosed with UC at age 4. She's been in remission since about age 5 on 2 g/day asacol and 75 mg/day azathioprine (imuran). Well, last week she started bleeding. It's been about 5-6 days, and so far, all our pediatric gi wants to do is to run a fecal calprotectin test, which takes 2-3 wks to get any results. But my understanding is that the calprotectin test just tells you if there's any inflammation. Well, isn't the presence of blood an indicator of inflammation? If he doesn't come up with a better treatment plan, we're going to be doctor shopping. Can anyone recommend a ped. gi in the columbus, OH area?

Does it make any sense to run a fecal calprotectin test and not a c-diff, CRP or even an ESR test? And 6 months ago, he said that she may need to have her dosage of imuran increased soon...

 

[my little penguin]

have you looked at nationwide children's ???
Ibd clinic?
Or there is cchmc Ibd clinic
Sorry she is having trouble

 

[BeeMom]

Yes, she sees a doctor at Nationwide Children's. I'm not aware of any other pediatric GI group in Columbus. If there is, please let me know.
Do adult GI groups treat children?

 

[Clash]

Hi BeeMom, welcome to the forum, so sorry you had a need to seek us out and that your daughter is experiencing symptoms. I would think if C-diff is suspected that they should run that too, is it constant D, is there a really foul smell, with fever or anything? I think I would still want it run just to make sure.

As far as CRP and ESR, those tests can pick up inflammation in the GI tract or anywhere in the body. If your child CRP/ESR levels have been an indicator in the past that their was UC inflammation then they are great. My son, CD not UC, never has greatly elelvated levels when it comes to CRP/ESR during a flare, but his last FC level during a flare was 1700 even though his CRP/ESR levels weren't really elevated. Since FC test indicates inflammation in the GI tract then it is a good test to have when trouble is brewing, but I would include the others along with it to get the biggest picture I could.

I'm going to tag DustyKat and MLP, they have a wealth of info and experience with IBD and also GothelQueen as she is well versed in UC and kids.

Hope everything improves soon, hugs and support your way!

 

[BeeMom]

The ESR and CRP tests have been good indicators in the past. She has just had blood, mostly on the paper when wiping up. We recently saw some mucus with the blood. No foul smell, no diarrhea. I just don't want this flare to get so far gone that we'll have to do a steroid run again along with a imuran dosage increase.

 

[Clash]

Blech...I know what you mean about the steroids, uughhh the drug I love to hate and hate to love!!!

If ESR/CRP are good indicators for her then I would want them included, whatever gives the best answers the quickest!

 

[Crohn's Mom]

Hi Bee and welcome

Have you clicked on the Doctor Directory link at the top of this page to see if there are any doctor recommendations in your area ?

 

[Sascot]

Hi and welcome. As far as I know the calprotectin just checks inflammation. Maybe he is thinking the blood might just be from a fissure rather than an increase in inflammation. I would have thought he would have run a blood test as well to check CRP, etc.
You mentioned increasing the Aza - if that was 6 months ago, has he run the test to check the therapeutic levels of Aza? I can't remember the name. Then you would know if the Aza was working to it's full effect or needed increasing.
Hope the bleeding settles down.

 

[Dexky]

Hi BeeMom, I would think that six years down the road, all testing would be in order including scopes. Perhaps your GI is taking the if this, then that approach and doesn't want to do too much all at once. What prompted the GI to say he thinks her Imuran dosage might need adjusting? Does your GI respond quickly to emails and phone calls? That may be the thing I like best about ours!

 

[DustyKat]

Faecal calprotectin and lactoferrin in most circumstances are very good indicators of inflammation and disease progression. It has been hoped that at some point these tests may negate the need for so many invasive procedures, like scopes, for children. They will never replace a scope but may reduce the amount needed when tracking IBD. As has been said, the blood markers are also useful but not as specific as the faecal markers as they are whole body indicators of inflammation.

Blood certainly can be an indicator of inflammation but by the same token it may be unrelated to her UC and instead be a tear, fissure etc. You really need to go beyond symptoms and factor in the clinical aspect of things to get a clear picture of what is happening.

How much does your daughter weigh?

Dusty. xxx

 

[BeeMom]

The doctor directory doesn't seem to have any ped. gi docs in my area.

I went through our old lab tests, and he's never run a calprotectin test before. Always a c-diff or an ESR or CRP. We do have a regular checkup scheduled for two weeks from now. And he always orders bloodwork at the checkup, so why not just order some now and get some questions answered? I'll be asking him that soon...

I'm assuming that he's been saying that she'll be due for a dosage increase soon because of her weight gain with age. But she's currently at 2 mg/kg, and an increase to 100 mg imuran will bump her up to 2.8 mg/kg. I read that there are more adverse reactions at levels above 2.5 mg/kg, so maybe he doesn't really want to go there yet.

And his office is maddeningly slow in getting back to you. It took three business days (and a weekend) for them to give me a treatment plan... and I still have questions. This slow response time drives me crazy, esp. since I tend to be quite the type-A personality when it comes to my children's medical care. I hate being told (over and over) oh, we'll check with the doctor and get back to you, and then I don't hear anything at all that day...

On the bright side, I've started to give her probiotics and omega-3 supplements, (I have to do something..can't just sit by the phone and chew my nails) and I think they're helping. Her last bm was much better.

 

[DustyKat]

It makes perfect sense to have bloods drawn before the scheduled visits to the GI and I don't know why he wouldn't request that things be done that way. How do you complete the picture when consulting when you have no labs to refer to? :yfrown:

I would ask that Thiopurine Metabolites be tested if he is going to up the dose of Imuran just so you have some idea of how well it is being metabolised at the current dose and if that may then be playing role in her current symptoms.

Dusty. xxx

 

[BeeMom]

Ah, the thioprine metabolite test. We had that once, when we had UHC insurance. They tried an increased dose and then gave her that metabolite test. Her levels were high (I don't remember the details) near the toxic range, but because they weren't above some magic threshold number, they insisted that it couldn't have been due to the higher dosage, she must have a liver problem. Well, when I asked (insisted) to have her dosage reduced again (this was many years ago) her levels dropped to normal and all was well. In short, they totally misinterpreted the test results.

Now we have Anthem, and last time I checked, Anthem doesn't cover the metabolite test. Not medically necessary. Maybe they do now, I don't know. But my experience with the test has left a bad taste in my mouth, and I'm not that willing to go there.

If she shows signs of getting worse, we'll get those blood tests asap.

What bugs me know is I was told that if the calprotectin level turns out to be high, she'll need a colonoscopy.

 

[izzi'smom]

So sorry that she's having trouble. Agreed to get labs before your upcoming appt...and you really want to stick with a peds gi...disease can present differently In Kiddos. Let us know how it goes!

 

[DustyKat]

The results of calprotectin can be used in a number of ways. Your GI may well use FC as a precursor as to whether a scope is needed or not.

Dusty. xxx