Help! Should I just let it go?

[hollylee11]

Hi everyone. I've posted before here about my daughter who is 2.5 years old. She has a history of loose, increasingly frequent stools that seem to worsen when she eats a high-fat diet. However she is growing quite well-- 70% for weight, 60% for height at last check. Her appetite is high. She has some occasional sneezing/ nasal congestion but nothing that couldn't be ascribed to allergy (she is a very allergic child). She had a double IRT newborn screen (not for mutations, but for the Irt protein) at birth and 2 weeks after birth, and passed both by a wide margin. She has also recently been sweat tested per my insistence at an accredited CF center and it was very low, at 10.

The things that have me worried, though, are that her fecal elastase numbers are normal, but JUST barely (she's been tested twice in the past 4 months, and both numbers were in the low 200s-- one was 205). And when she cries, her tears dry like salty streaks on her face which always struck me as odd.

We are not being taken seriously by any doctor-- not her ped, not her naturopath, nor 2 different pediatric GIs, one of whom works with the local accredited CF center. In addition we've spoken to the CF center and they too were unconcerned about her.

At what point do I just 'let it go'? I'm still concerned about CF but no one else is, and no one will order genetic testing. But I feel like her pancreatic numbers are too low and I need an explanation for them. Any suggestions on where to turn?

 

[Printer]

At this point in time, I would have to ask you, how many second opinions do you need? Let it go for a few years or until there is something resembling a CF flare up. It is good to advocate for your child but not to the point that the Doctors ignore you.

Bill

 

[hollylee11]

Thanks. What would be the signs of a CF flare up, so I know what to watch for?

 

[sharon]

Your daughter's sweat test was VERY low, passed the newborn screening with flying colors, she is growing very well and isn't having respiratory problems. I can see why the doctor's aren't concerned, testing shows she doesn't have CF and she is healthy. You seem on top of things, so keep it in the back of your mind if she starts to have significant lung or digestive problems when she gets older. I say just enjoy your healthy child and stop worrying!
Sharon, mom of Sophie , 11 and Jack, 9 both with CF, Grant, 4 and Paige, 2, both without CF

 

[scarecrow]

I don't know the answer to this question but I would try to find out if there is some other Pancreatic disorder that might account for her inability to digest fat.

 

[Justinsmama]

We were told the only pancreatic disorders that affect the pancreas are CF and SDS (Swachman Diamond) which is pancreatic and bone marrow failure. My son was tested for both because of some blood issues, but does not have it. I think you would have a good idea if your child had this. If the elastase numbers were done close together, it could be from a viral suppression. I know Justin had 3 tests done a total of 7 month spread until we were sure. His went from 148 to 70 (6 weeks latter) to 25 at the end of the 7 months. His body mass index went from 38% to below 3%. You could not miss is.

 

[Printer]

What you were told is not true. There are several causes of pancreatic issues. Google pancreatic disorders.

Bill

 

[briarrose]

Has she been tested for celiac disease or milk protein intolerance/allergy? Both of those things can cause the really loose stools.

 

[hollylee11]

Hi briarrose, she was tested for celiac (blood test only) and it was normal but I was told this isn't a terribly accurate way to test for celiac. She does have MPI as she has a severe milk allergy but she does not consume any dairy, even hidden dairy in foods.

 

[jshet]

Since she is growing there is something called toddlers diarahea that my non cf child suffered from when she was little. Basically it is ongoing loose stools up to many times a day that does not affect their growth. They grow out of it. Good luck.

 

[LittleLab4CF]

I think you are doing all you can right now. Try to be comfortable with that and distance your fears from your diligence over your daughter's health. You suspect CF and the numbers just aren't confirming it. Yet. A common theme I see throughout this community is a period of transition from thriving to a failure to thrive or visa versa. It usually is marked with a period of good or marginal tests and terrible but infrequent symptoms. In nearly all situations as soon as something can be done to ward off emerging issues, both the issue and the treatment will become apparent.

For your own peace of mind take Printer’s advice and have her evaluated at a certified CF center. At a point you need to ask if a test or exam is going to yield anything actionable. Don’t waste time and certainly don’t make your daughter sick because you fear she might be. The children of parents who don’t fear death learn to love life.

LL

 

[jchelle]

check for clubing of the fingers and toes. if they are clubed that is a very big indicator.