Prometheus IBD SGI

[Imerald]

We just recently went for labs and didn't realize that this was even ordered and that our lab couldn't do it. I'm kinda peeved that the doctor or nurse didn't review it with us. I definitely have learned that I should look over what's been ordered before we leave the office. I would have made sure we had everything we needed to do the test while we were getting the other labs done had I known. Now we have to stick her again just for this test. :ymad:

We have our next appt on Monday and I will be asking if we need to have this done asap or if we can wait and do it with the next set of labs. What do you guys think?

Also, for those who have had this test done, did you have to have the tubes shipped to you first and then take them to your lab? That is what our lab told us yesterday.

 

[Patricia56]

Are you sure you even need this test done? Are you sure your insurance will cover it?

 

[Imerald]

Not sure if it's needed as it was never discussed with us. We'll be able to clarify that on Monday at her appt.

Once we confirm with the doctor, we'll be contacting the company to have the tubes shipped since our lab doesn't carry them. We would have to arrange the finance piece with Prometheus directly per the lab.

I'm just curious what everyone else's thoughts are regarding the test and their experience with it.


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o

 

[DanceMom]

My daughter did have this test done a few years back. The results clearly showed Crohn's, yet we still don't have a Crohn's diagnosis. Also, our insurance would not cover it even after saying they would. I would definitely discuss with the GI and ask what they plan on doing with the information the lab would give. Is her IBD diagnosis in question?

 

[Patricia56]

It's my understanding that this testing is sometimes done when a diagnosis is in doubt or it's unclear whether the child has CD or UC.

It doesn't do a very good job distinguishing CD from UC and non-IBD. Unfortunately it also doesn't have a very good record for reliability - in other words you don't necessarily get the same results twice. Our GI doesn't use it because he says the results are not usually helpful, that getting biopsies is much more helpful.

My son did have the earlier version of the test IBD First Test when he was 10. In retrospect I am shocked that Kaiser paid for it but they did. They were trying to avoid scoping him but the test came back very high for Crohn's and they did the scope which confirmed the diagnosis.

If your daughter's diagnosis is in doubt or she's got an IC diagnosis then the test might be worth doing. Otherwise I would really want to know what info the doctor was expecting to get out of doing the testing that he didn't already have, assuming she's had scopes and biopsies done.

 

[Imerald]

She has had both scopes and biopsies as well as the upper gi with small bowel series. Her endoscopy and GI series were both normal, but her colon was pretty irritated during the scope and the doctor said as soon as she would touch it anywhere, it would bleed. That in conjunction with her symptoms, loose stools with blood, tummy pain, and slow growth/weight gain is where the UC diagnosis came from. The second GI said the same and that is also the direction the GI we see now is leaning.

I'll definitely be asking what the purpose if this test is on Monday at our appt since it was never discussed with us. I appreciate the feedback and it's pretty consistent with the research I've done myself on the internet. I'm just curious if anyone has seen a benefit in having it done if it seems to not be conclusive. The first and second G/I we saw were very cautious of doing anything they didn't think was worth the result.

That said, we have seen better results with the GI we are seeing now. She's up 3 lbs since we started seeing him in April. She only gained a pound in 6 months between the other 2, and that would still fluctuate back to where she was when she was diagnosed.





~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o

 

[DanceMom]

Are you still at Nemours or did you go somewhere else?

 

[Imerald]

Still at Nemours with Franciossi


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o

 

[DanceMom]

Hmmmm.... he's always been great about reviewing all orders and med changes before wrapping up the appointment. In the future if you have a question just email the office. They usually respond within a few hours. Also, All Children's should be able to do the lab for you. We just went there to have some immunity labs done that no one else would touch.

 

[Imerald]

Yeah, that's why I was surprised we didn't even know it was ordered cause he's always been good about that. I love the email system! I just figured since we had an appt Monday, I would just wait and talk about it then.

What's All Children's?0


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o

 

[DanceMom]

All Children's Hospital in St.Pete. They have an outpatient lab and will draw things that Quest and LabCorp won't.

What meds is Ella on? Have they been working? I know Dr.F always wants additional testing and often another opinion before stepping up medications.

 

[Imerald]

Thanks, I'll check them out if we decide we're doing the test.

She's been on Sulfasalazine, prednisolone (just weaned off last week) Flagyll, Zantac, and and an appetite stimulant I can't recall the name of at the moment.

Ella just recently became fully potty trained, so it's not been as easy to tell if there is any blood in her stools, etc. But she hasn't been waking up with tummy pains or been complaining about her knees and her weight is up. I just looked at her CBC results and everything was in range as well. So, let's hope we continue on this path.


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o

 

[Jmrogers4]

We had the test done a couple of years ago and insurance did pay for it. The GI ordered it because we just couldn't figure out what we were missing and he wanted a bigger picture of what we were dealing with. If I remember right they sent us with a special box and paper/form for the lab at the hospital (I'm assuming it was to sent the samples in).
It really didn't make any difference in our treatment at the time but it showed he had the Nod2 mutation so it was talked about switching to remicade but we didn't do it at that time.

 

[DanceMom]

Hope your appointment goes well today! Let us know what you find out!

 

[Imerald]

Thanks, our appt. is actually today, not Monday. Totally had to re-arrange plans we made on both days. I don't know why I thought Monday was the 24th. I'll let you know how it went after the appt. later today.


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o

 

[Imerald]

So, the lab lost a test, but Dr. F didn't think it was a big deal considering how well Ella is doing. She's gained 2 pounds in 2 months and has grown a half inch. She's now at the 10th percentile for both height and weight and lining up better on the chart. So were going to stay par for the course and adjust her meds slightly in the hopes we can stop the Zantac and the Periactin. So were starting a modified schedule with both of those and will continue with the same dosage for both the Flagyll and the Sulfasalazine. We do need to increase her vitamin d and even though her folic acid was high at her last appt (didn't check it this time around) they want us to keep her on a prophylactic dose because of the Sulfasalazine. So were hoping to maintain this progress and wean off the meds and stay with the Flagyll and the Sulfasalazine for the long run. If things start to slide again or she flares, we may have to move on to 6MP.

Based on the above, Dr. F asked us to check and see if the Prometheus is covered, if it is, we'll do it with the next set if labs in 45 days. If it isn't, we'll wait until he needs more information or if she isn't responding to meds like we would expect to see.

They also want us to see an eye doctor as she's been squinting. So I'll need to get that scheduled soon.


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o

 

[my little penguin]

Make sure it's an opthamalogist (md) not optometrist .
Ibd kids are more suspectible to specific eye disease that an opthamalogist is trained to detect and treat .
An optometrist missed my son's eye disease for years .
The opthamalogist dx it at the first visit within five minutes of seeing him.

Glad the appt went well

 

[DanceMom]

We saw Dr. Fasiuddin (ophthalmologist) and she was great. A did not have any eye issues, but we were advised by the GI to have her checked annually as a precaution.

 

[Imerald]

Thanks My Little Penguin, I'll make sure to do that. That sucks it took so long for your son. I had a similar experience of my own with a diagnosis. The right doctor makes all the difference in the world.


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o

 

[Imerald]

DanceMom, is she with Nemours?


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o

 

[DanceMom]

Yes she is. I try to do all of her care there because they are so great with accommodating us with a payment plan. Other hospital/clinics we've been to seem to care more about the money and less about the child & family. Not to mention it is a fab hospital!