Pancreatic insufficiency questions

[anonymous]

We just got the results back from my daughter's (7 weeks old with CF) test to determine whether or not she was pancreatic sufficient. Our doctor was out at the big CF conference, but I spoke briefly with a nurse from the pulmonology department who said that her levels were "very low" and told me to put her on Creon 5 before meals.

I am very confused though, because not only does my daughter have a mutation that is associated with pancreatic sufficiency (R347P), but she also does not have any of the symptoms that typically stem from an insufficient pancreas. She has gotten so big, gaining 2.5 pounds in her first month from her hospital discharge weight. Also, she has one, maybe two poopy diapers a day that smell like normal baby diapers. I've never smelled the "foul, offensive" diaper smell that they say is a result of an insufficient pancreas, but if I understand correctly, I would know if my daughter's fit into this category, right?

So my question is, are there other symptoms that I haven't heard of? Or are there any other factors that might contribute to these test results? I'm breastfeeding, so could my diet affect her results? It just seems like with her large weight gain, normal diapers, and a mutation that is typically sufficient, these results don't make sense.

I have a call in to our doctor to discuss it, but if anyone has any questions I should be aware of to ask, that would be great.

Thanks!

-- Jenica

 

[rose4cale]

Hi Jenica. My son didn't really show pancreatic problems until he was on cereals, baby food and solids. Then we really saw a difference. Now looking back I noticed that he was hungry all of the time, but I didn't really notice anything until he was about 6 months, considering his stools. Of course we didn't know of the CF at that time.

It sounds like she is growing and gaining weight well. That is great!

 

[lflatford]

Hi,

My daughter did not start showing pacreatic insufficiency problems until she started eating table food, at about 12 months she all of a sudden quit growing, had a large bloated belly 24 hrs. a day, and had numerous large fowl smelling stools every day.

So she is an example of someone who does not show symptoms right at birth. If you see a specialized CF doctor I would go with their reccomendations.

Good Luck!

 

[anonymous]

there are varying degrees of sufficiency and sometimes insufficiency can take a while to set in. My daughter has a DF508 and an unknown mutation. She was exclusively breastfed for 6 months then we started adding cereal/baby foods. She gained well during those 6 months-bc breastmilk is easily digested & absorbed and was not taking enzymes but her weight gain did slow waaaay down once we added foods. Her BM's were almost "smell-less during the time she was breastfed. She is now almost 2.5 years and takes half of her allowed enzyme doseage. Some people are at their max. allowed enzymes (per body weight) while others are taking none - so there are just varying degrees. Studies are now showing that other genes (besides the CF mutations) affect weight gain/absorption so this plays into the whole scenerio too...

At this point, the fecal fat test would be very accurate for your daughter since she is on a simple feeding schedule (it gets harder to determine once whole foods are added).

 

[anonymous]

hi Jenica,

I don't know the answers to your questions to your daughter's mutation and level of pancreatic suffieciency but i think breastfeeding your daughter with CF is really important to her health. Just thought I'ld let you know that it will help her immune system, protect her from respiratory illness, and help her digestive system as well. I breastfed my daughter with CF through even 2 surgeries so if you ever have any questions about breastfeeding a baby with CF you can e-mail me at rebjane30@yahoo.com.

The doc may want her on the Creon 5 so she can absorb all the nutrients and vitamins she can. I started Creon 5 when my daughter was about 2 weeks old. My daughter is almost 3 with CF. I hope I'm making sense because I'm overtired as my 7 year old son is home with strep throat.

Rebecca(mom to sammy 7 no cf and Maggie almost 3 with CF)

 

[anonymous]

Thanks to everyone who responded. We have an appointment with our doctor on Friday, so I'm hoping to get more info then. Would those who responded before mind sharing their children's mutations with me? And when they went in for the fecal fat test, how was it tested? Was it a period of stool collections or just one diaper?

Thanks again!

-- Jenica

 

[rose4cale]

Hi Jenica. Cale's mutations are both Delta F508. He had SOOOO many stool samples through the course of a year. Some of them were collected in a baggie. Others there was so much of them without urine that the doctor could just spoon some out of his diaper. He had some before the CF testing because my doctor was thinking he just had an intestinal bug. During the CF testing, they just collected it while we were there.

 

[anonymous]

Jenica,

My daughter's mutation's are deltaF508 and W1282X. She has never had her stool tested for fecal fat. She definately has pancreatic insufficency because she was born with a meconium ileus. We just base her enzyme dose on her weight, height , growth, and stools. One trick our doc said is if you can throw one of her poops in the toilet and it floats it has fat in it. a well-absorbed poop sinks to the bottom. This is hard to do with a baby for obvious reasons.

Take care,

Rebecca(mom to Sammy 7 no CF and Maggie almost 3 with CF)