Please help! Possibe CF? Sweat test needed after rectal prolapse in 2 1/2 year old




This is my very first time posting here. I never thought I would find myself posing questions in regard to CF and my children, as I thought any fear of CF would have been completely put to rest by my prenatal testing and newborn screening. Apparently, as I am learning, this is not always the case.

I just got back a little while ago from an over night stay at a children's hospital following my daughter's first experience with rectal prolapse.

After speaking with the gastroenterologist at the end of her 24 hour observation period, I learned that it is protocol to send children her age with rectal prolapse for a sweat test for CF. He sort of brushed it off, and I brushed it off as well. Then, of course, I came home and googled it.

I am currently quite terrified, because it seems she may have some symptoms of CF, and I am in desperate need of input. Here is a little background, please tell me what you think:

-She is 2 years and 7 months old. She tested negative for CF during new born screening, and I also tested negative for whatever gene mutations are tested for during early pregnancy- in each of my three pregnancies. She is my middle child, I also have two sons ages almost 4 years old and 10 months old.
-She has had severe constipation with abdominal pain for 9+ months. Her stool is often the size of a baseball and hard as a rock. Other times it is very soft, but no less painful for her to pass.
-She only had one rectal prolapse, which took place yesterday afternoon following an enema.
-Since birth, she has had very foul smelling stool. She can clear a room. It is much more smelly than my other two children.
-She has always had a decent appetite, but has never really put on much weight. She has been consistently in the 5-10th percentile for weight since birth. She didn't catch up to the 25th percentile until her 2 year well child visit. She is very petite.
-Since late infancy, she has had large, hard green "boogers" in each nostril, almost everyday and when she is not sick, nearly completely blocking her nostrils. They are huge. On the days she does not have that type of hard mucus, her nose seems to always be crusty and have "boogers".
-Lately (last few months) her eating and sleeping habits have changed. She eats less, drinks more liquids, and wants to sleep in our bed.
-She has never had breathing or lung issues that would signal a problem. She is currently getting over a viral upper respiratory infection (her lungs sounded clear) and her first ear infection.

In addition, I am thinking that my 10 month old son also has some concerning symptoms:

-He has a very large appetite and loves "solid" (baby) food. He eats a lot, and moves his bowls sometimes up to 3-4 times per day, often ruining an outfit.
-He is also on the smaller side- 25th percentile for weight.
-He has had what seems to be one cold after another for the last few months. He had at least 3-4 coughs in a row, and is currently getting over bronchiolitis and a double ear infection.
-He would often sound gurgly when sick.
-History of pyloric stenosis (6 weeks old).
-Passed new born screening for CF.

What do you think? Should I be very concerned? The sweat test is not yet ordered, as the gastroenterologist wants to schedule it at her 2 week follow-up appointment. That seems like an eternity from now. Do you think I should insist that my 10 month old be tested as well?

Any input or information you could pass on would be greatly appreciated! I am one extremely anxious momma right now!


Super Moderator
Dear mom,
i am so very sorry for your worry. What you write could fit cf but also not. I was trying to see what NY does for newborn screening but site is down next. I'll post when I can to explain that. I guess knowing the wait and the worry I'd ask the doctor to see if you can get in for a sweat test sooner. Make sure t is at an accredited cf center because otherwise it will be worthless. lists those.
Id also add that I know how pertrifying this is, but if it is cf your little one has always had and now she can get proper treatment. Also much of what you giggle is outdated and there are now drugs that can treat the underlying defect with cf which are new...I.e. A few yeRs old and one more recent. And there are many more drugs and better in the works. So if it is cf, that means something very different today than it did even five years ago. But lots of kids have issues like you describe for different reasons...unfortunately not much to do but wait and pray.
Hugs and prayers, to a 6 year old with cf


Thank you so very much for your reply! I have been sitting here crying and praying while waiting for a response. i appreciate it so much!!

From what I read, NY state routinely screens for CF. I will insist on a sooner sweat test, and will make sure it is an accredited center, most definitely! I will also ask to have my 10 month old tested.

I am very relieved to hear that there are much better medications and ways of treating CF then there were years ago. The wait is agonizing... but, I know it is all I can do right now- continue to wait and pray.

Thank you for your kind, informing, and encouraging words! I will keep you posted.
May God bless your little one! sending lots of love and prayers :)


Super Moderator
Oh mom...I am so sorry. I remember painfully that wait. And even though DS has cf, he is the happiest little guy...and he also has never had a cold, flu, ear or sinus infection. The gi stuff gets him more but he is doing amazingly well and we are so blessed.
re the screening what I meant is exactly how they screen. I see the cite is now up so I'll pull and post in a minute.
Hugs and prayers


Super Moderator
This link explains the two types of tests conducted:

This explains what NY does:

And this explains in detail what exactly NY tested:

If I would you, I'd contact the newborn screening office and ask for a faxed copy of the results to see if the levels were elevated and also find out what and how many mutations they tested for (there are over 2000). That might give you some comfort/more knowledge while you wait on the sweat test. While the IRC levels can be low and have CF, knowing they were low would be nice too.

Hugs and prayers,


I can't thank you enough for the kindness, information, and support! I really appreciate this! I put a call into the hospital where my children were born, and I need to obtain forms for the release of their medical records/newborn screening results, which I will do asap. I am currently waiting for a call back from the GI doc to see if they can fit me in sooner. I just cannot wait much longer. :(

Now, even though it sounds crazy... I sort of started to taste their foreheads for extra saltiness. Honestly, they all taste salty to me along the hairline, and the baby also tastes salty when I kiss his little feet, but no where else. I can't tell if it seems "extra" salty or not, but now this makes me nervous as well. :(

Thank you so much again! I am so glad your little guy is healthy and active and happy!! God bless him and you, too! :) xo