fecal fat tests?

[scd0420]

New here with some questions about testing:

My 5 year old daughter had a fecal fat test done, and it came back with fat in her stool, so the GI is requesting a 72 hour fecal fat test. She also had a pancreatic elastase-1 test done. The nurse said it was "ok" but wouldn't elaborate. My daughter has also had an abdominal Xray, but they keep telling me the results aren't in (the Xray was over a week ago).

Katie is also seeing a pulm for asthma like symptoms, but no official asthma diagnosis. She has been on augmentin for a month for sinusitis and seems better.

I did some googling on both stool tests and they seem to indicate that these tests are screens or (on some sites) first level diagnosis for CF. I can't get a straight answer out of any of the doctors as to the reasons behind the testing, other than "if we need more tests, we'll decide then" or "we just want to see how much fat is in her stools". Can anyone elaborate for me? Do you know if these are first rounds in testing? If she has fat in the first stool test, what does that mean-is she showing signs of malabsorption? Will the next round of tests just confirm that? Were any of these tests that your child had done?

Thanks for any thoughts, experiences.
Stephanie

 

[julie]

Stephanie,

Yes, fat in stools is a sign of malabsorption.

It sounds to me that your daughter has some pancratic/digestive issues as well as some pulmonary issues. Definately some classic clues of Cystic fibrosis.

I would recommend you have a sweat test done on her. Depending on the results of that, I might also recommend a CF genetic blood test. There are 2 different "types" of CF genetic tests. One is a limited panel test of the 25-89 most common CF mutations. The other (and much much more expensive) is a test which analyzes and looks for over 1000+ known CF mutations.

Let us know if you have any more questions.

 

[Alyssa]

Ditto to Julie's post -- get the sweat test, if that is inconclusive ask for the full genetic testing.

Yes, her symptoms do sound very CF'ish I would tell the doctor to quit beating around the bush with you and just test her for CF there is no reason for him to give you all those vague answers.

I think it might be better to just ask about getting a referral to a certified CF center, where they will give you all the best tests, straight talk and information you need.

 

[anonymous]

Thanks for the info from both of you. Wouldn't I need a referral to get the test done at the CF center by me? Or can I just make an appt and go? We had my youngest daughter tested at 9 months-the pulm sent us though. The test came back negative, but I was never given the numbers and she was diagnosed with severe asthma (she's had RSV, respiratory infections, etc).

We are waiting for the kit to come in the mail for the 72 hour test....hopefully Katie will be able to have some BM's..she's been constipated since she was a baby and has been on Miralax since she was about 1 year old or so.

 

[Alyssa]

Needing a referral depends on the specifics of your health insurance plan -- some really good plans still allow you to go see whoever you want, but most nowdays do require a referral -- it is pretty easy to find out though, just give your insurance company a call and say "I want my kid to see a specialist, do I need a referral for that" and they will tell you right then what needs to happen. If you do need one, don't be shy about asking your doctor to give you the referral -- it is in the best interest of your child.

And, yes, now based on what you said I REALLY think you should have both (or all, if you have more) kids tested. It is quite common to start with the sweat test, but even if they come back borderline or even normal (see my blog) then I would recommend you demand that your kids get the full genetic testing done -- the health of you kids depends on getting the correct diagnosis for them -- they will be much better off if you are treating their CF symptoms with known CF treatments (assuming they have CF) then taking a shot in the dark with treatments aimed at helping asthma or vague digestion issues.

BE PUSHY AND STAND UP FOR YOUR RIGHTS -- get the tests and the results, make sure you are 100% satisfied with the answers you get. In the meantime, learn all you can about CF and find out where the nearest CF clinic is to you. The more informed you are, the easier it is to persuade the doctor to give you the tests and referrals you want.

 

[julie]

ditto what Alyssa said about the referral, really depends on the insurance. If you are on an HMO, you WILL need a referral. If you have a PPO plan where you can choose who you go to (primary and speciality) then you can just call the clinic and make an appointment. The clinics are also usually good about helping out wiht insurance stuff. You can find your local CF clinic(s) by going to www.cff.org and putting in your state.

I take it your youngest had a sweat test at 9 months? if she is still having respiratory infections, severe athsma.... I would HONESTLY recommend that you do a blood test on both of your children. Many mutations that are being seen more an dmore today in the CF community (there are over 1000 currently) sometimes don't show up on a sweat test (they render "normal" or borderline results). A blood test is much more accurate. Initially you should do the generalized blood test unless you have great insurance that will cover the extensive (and expensive) test right off the bat. Be persistent though, don't ever let a doctor tell you that you don't know because you aren't in the medical field or that he "doesn't think it's CF". Many parents on here can share their personal stories of misdiagnosis over the years. THe finally got fed up and demanded tests. Sometimes you have to be a little ruthless-don't feel bad. It's your job and your RIGHT as a parent!!!!!!!!

Let us know how it goes, what you find out, and if you run into anything.

 

[anonymous]

We do have PPO..I can just call CHOP and get Katie in? I'll have to find out what our insurance will cover. I can't tell you how nice it is to hear other people telling me to keep pushing. I don't know if it is CF or not, but her symptoms scare me. My husband believes in "nothing to worry about until there is something to worry about" but I just can't wait that long.

Since they found fat in Kate's first stool test, is that usually indicative that they will find more in the next go round of tests? Is it normal to do the next set of tests (I called the nurse today for more information about the test and she said it is a 3 day random sample not a 72 hour test anymore-she gave me the wrong info)...does that make a difference anyway-they are still looking for fat absorption, she said they needed more samples.

I guess my big question, and one that I am afraid to ask out loud is "is this leading to a CF diagnosis?" I'm amazed as I read through the posts the difficulty some people had in getting tested and the levels of symptoms are so random, no wonder it's hard to get an answer to this. I wish PA tested babies at birth.

Should I call the GI and just request that they get the test for Katie, or should I just call CHOP? One last question-how do I log on now? I can't figure out where to go and put my log on name in so I can show up other than anonymous.

Thank you so much for your constant responses.

 

[julie]

I'm not familiar with what CHOP is so I can't really answer that one <img src="i/expressions/face-icon-small-smile.gif" border="0">. Usually with a PPO they will cover most CF diagnosing. If you are worried about the costs, you can ALWAYS request a preauthorization.

You aren't alone in the situation with your husband, sometimes i's the husband pushhing and the wife saying, "nothing to worry about"... He just may keep up with that opinion and that's ok, it's just his way of dealing. It might help if you two just agree to respect the concerns, or lack of concerns that each of you have about the situation.

I'm honestly not familiar with the different types of fecal fat tests either... maybe someone else can give you a more specific answer on this one-sorry.

I am no doctor, and CF can't/shouldn't be diagnosed just by looking at someone and considerng 1 or 2 factors, but with some athsmatic symptoms and digestive and fecal fat problems that your daughter is having, I would say that in all honesty, you definately should NOT rule CF out as a possibility. Sometimes even the baby heel prick teests at birth for CF don't actually show CF because the child may have a non-common CF mutation. CF is a very very complicated disease to diagnose.

Maybe you could tell me what CHOP is???? I have no idea what you are referring to when you say that.

As far as logging in, have you registered yet? When you first get on to the forums, on the Left hand side, about 1/4 way down the page you should see a spot to log in, and right below it is somewhere to register for a user name. If you don't see that, let me know and I'll try to get ahold of Bill (really smart website guy <img src="i/expressions/face-icon-small-smile.gif" border="0">) to help you out.

 

[anonymous]

CHOP -- isn't that Children's Hospitals of Philly?

I just find it odd that they did the fecal fat test first. The doctor's pretty much figured DS had CF 'cuz of meconium illeus, the whole intestinal blockage, etc. deal at birth -- they did a blood test which showed double delta f508 then they did everything bass/ackwards -- did a sweat test -- on a newborn -- ummm, newborns don't really sweat. Results came back 32. Then the dietician did a fecal fat test, to which the CF doctor rolled his eyes and said -- we already KNOW he's pancreatic insufficient and requires enzymes, so why in the heck are they doing THAT test! Liza

 

[anonymous]

Yes, CHOP stands for Children's Hosp of Philadelphia...sorry, I'm so used to hearing CHOP that I don't think twice about posting the acronym.

I don't know why they are doing the fecal test first, but I didn't realize the test could screen for CF until I googled "fecal fat test" (which I keep promising my husband I'll stop doing b/c it's making me crazy). Her GI set her up for these and I thought it was for her chronic constipation. It might still be, I don't know....they aren't really telling me their thoughts on the reasons behind the test.

It's hard-I know I can't and I shouldn't diagnose based on what I'm reading. I just want answers....yes or no but let me know so I can get her the help she needs for whatever the problem is...if she's just a constipated asthmatic or if it's more...

Sorry I'm still under anonymous..I looked for the place to log in, but honestly, I'm amazed I can post, let alone log in..I'm computer illerate.

Stephanie

 

[julie]

If CHOP is an accredited CF facility, I would just call them directly, tell them your insurance and ask if they can schedule an appt for you.

Your husband just needs to have you let him know that this is YOUR way of dealing with her somewhat unanswered health problems, and HIS way is to just not worry until there is a reason to worry. That's fine, everyone deals and thinks differently. So in the meantime, until you get some sort of diagnosis it might be better for you to ask him if he can let you deal with this your way, and you will let him deal with it in his way and not hound him about it until you know exactly what's going on (but then of course you both have to do it <img src="i/expressions/face-icon-small-smile.gif" border="0">)

Of course you want answers, dont feel bad about that for a minute. And whatever you do, DON't stop until you get them!!!!!!!!

I emailed bill and asked him if he could help you out with logging in. I'm not too computer savvy either and this site was redone last week so there may still be a few glitches.

Anyways, welcome to the site. I hope you get your answers and please come to us whenever you need help!!!!!!!

 

[Lurking4now]

Stephanie,<br>
I have no idea about fecal fat tests except that my dr may order
one for DS this weekend.  But I did want to say that my
husband is pretty much the same.. He doesn't really want to know
too much until somebody tells him specifically that our son or
(soon to be) daughter actually has a diagnosis.  I, on the
other hand, am researching almost obsessively.  I want at
least one of us to be informed!  But I can understand his side
of the issue, too, I guess.<br>
Lisa

 

[anonymous]

Stephanie, my ex-pediatrician routinely did fecal fat tests as a "first" screening for cf. My guess why your GI is doing it is not just because of the possibility of cf. There are other less common conditions or even illnesses that can cause malabsorption. He's probably doing it as a starting point to direct him in the right path. The fecal fat test can no exclude cf even if there's no malabsorption since some cfers are pancreatic sufficient.

Also, just wanted to add on the insurance issue. It is true that you can call CF centers directly like Julie stated. However, be prepared that even if your insurance doesn't require a referral, the cf center might. I tried going that route since I couldn't get a referral from my ex-pedi. We had a good PPO, the cf center was in-network even (we do have out of network coverage, too, but this cf center was in network.) Anyway, the cf center would take dd however, they would have required us to pay 100% of the visit up front and be reimbursed by insurance. That is their policy, no exceptions. It is an accredited CF center and is very well known. I would have had no problem with that except that I was told to expect a total bill of between $1,000 and 2,000. We didn't have the money to just pay that up front. In the end, we ended up switching drs and our new dr had no problem referring us out and we just had to pay our $20 copay upfront.

Good luck!!

 

[anonymous]

Wow, that's an expensive test....thanks for your feedback on it being a first screening. How difficult did you find it asking your doctor for a referral? I havent asked them yet, but I'm wondering what kind of response I'd get-that I was being overly neurotic or doing their job for them, or jumping the gun.... They are doing the next round of fecal tests this weekend b/c they found fat in her stools after the first test.

Her GI is on vacation this week, so I guess I'll do the collection and drop it off Monday..hopefully I can talk to the GI and maybe find out if they have any thoughts and could just ease my mind a bit. It's one of those things, I'd rather know what the possibilities could be than let my imagination run wild.

Stephanie

 

[anonymous]

Hi, Stephanie, I'm the poster who had the problem with the referral. I should have clarified - that was a referral to the CLINIC NOT for the sweat test. Generally speaking, a cf clinic will not sweat test someone they have not seen (exception for siblings & family members of cfers.) Therefore, you make the clinic appt where they do the standard "first" time testing of x-rays, sweat test, pfts if the child is old enough, etc. That's what the $1000-2000 was for-everything. The sweat test itself is generally under $100. I think our insurance paid $58 for each of ours.

As far as asking for a referral - you mentioned that your dd has asthmatic tendencies, didn't you? If so, I'd just explain to your pedi that you'd like to see a pulmonologist with CHOP whose affiliated with the cf center. Tell him the main reason is to make sure you're doing everything right on the asthma diagnosis but also to rule out cf. Or, if you feel uncomfortable mentioning cf, just ask for a pedi pulmo from CHOP (you'll want to verify that it's the same at CHOP but our cf clinic is a pediatric pulm clinic - they are accredited, well known respected, etc for cf treatment BUT they ALSO treat asthmatics and kids with other lung issues.) You could just ask for the referral for the asthma. If your dd is already seeing a pulmonologist, I'd just call him/her and request a sweat test, explain the situation to the phone nurse. Ours is really nice and really helpful.

Also, did you mention that your youngest was sweat tested and it was ordered by a pulmonologist??? If so, does THAT child see the pulmonologist still? If so, you may be able to get your older child in without a physician's referral since your youngest child is an established patient. The same clinic that required payment upfront for our one child, had no problem seeing our next child without a referral due to the established relationship with the first child.

I hope that helps. Good luck!!