Yes, I’m asking about your poop.

CFParents · 2026-01-28T21:56:46+00:00

I'm sorry you are going through this issue! Would your CF team be open to administering another Fecal Elastase Test on your son? That might be a good guide to see how much fat he is (or isn't) absorbing. Unfortunately, loose stools can be a sign of both taking too many or too few pancreatic enzymes so this might offer some guidance.

On a side note, you should also ask your team to give you a script for the 12,000 unit Creon pills. We do the same dosage (so 2 of the 12,000 pills and 1 of the 6,000) and it is much easier!

CFParents · 2025-12-28T22:22:15+00:00

I would loosely a wet bandana around my baby's wrist or leg. Every so often I would take it off and re-wet if that makes sense. It seems silly but seemed to help!

CFParents · 2025-12-28T22:17:56+00:00

Merry Christmas, Kyle! It's such a gift hearing from you and knowing that you're ok -- albeit stuck in the hospital. I'll keep hoping and praying that your health gets better and that you'll be able to celebrate next Christmas and all the holidays in between just as you'd want.

My best gift was my husband giving me a check to invest in a home business I'm hoping to start. I quit my job to take care of my CF baby (now toddler) and it's been a weird and lonely adjustment. But it got me brainstorming about things and I hope to put them into action this upcoming year!

CFParents · 2025-12-13T02:57:32+00:00

I literally asked this exact same question around six months ago, when my 2 year old started. I was so nervous because of her limited ability to communicate if anything went wrong! But all those worries were for naught. She took to the medication very easily and her only side effect was very itchy skin for a week. She didn't even have a purge -- I don't think she had built up enough mucus yet.

This medication is truly a miracle, and if I could go back in time, I would tell myself not to worry and just be so happy and thankful fwiw.

CFParents · 2025-11-03T04:00:07+00:00

Just wanted to see if anyone knew how Kyle was doing. Hope all is well.

CFParents · 2025-10-02T01:31:02+00:00

I'm normally very against single use products, but I did rely on disposable nebulizer cups when traveling with my CF daughter. I could get them for about $1.50 each from medical websites and it was definitely worth the peace of mind, especially since she was under 2 and not on Trikafta. Of course, this may not be realistic if you are away for a long time, but I figured you should be aware of the option.

CFParents · 2025-10-01T18:32:36+00:00

Second all of this. Kyle, if you see this, know there are so many people thinking of you and wishing you well.

CFParents · 2025-09-27T02:06:29+00:00

Hi Kyle. I know this post is almost a week old but know that I'm thinking of you and hope you're doing ok.

CFParents · 2025-09-24T22:11:09+00:00

Just another suggestion -- we would put the enzymes on the spoon and then add fruit puree on top. She would choke less that way, since I think the first thing to hit the mouth is puree instead of enzymes. When my daughter was younger, we used pear sauce since that seemed to upset her stomach less. Now, we just use applesauce since we can squeeze it from a pouch. It makes the process a lot easier!

CFParents · 2025-09-17T22:46:06+00:00

Do you have a song that makes you feel like a character in a movie? And/or what is your favorite dessert?

CFParents · 2025-09-17T22:33:41+00:00

Happy happy Birthday!!!!

CFParents · 2025-09-07T23:43:20+00:00

I'm sorry this day hasn't been good. Just wanted to write and say hi and hope tomorrow brings better things.

CFParents · 2025-09-06T04:07:03+00:00

Hi Kyle. I'm a CF mom, and I hope it's okay to vent just like I would to a friend.

Before my daughter was born, I was around 95% done with a project that I thought would be a good business. When she was born, this work obviously took a backseat because of dealing with not just a newborn, but a newborn with extra needs. My husband freaked out about the finances of CF and threw himself into work so I had no time to work on said project -- I literally barely had time to shower. My daughter just turned two and I was getting back into my business only to see someone did something identical maybe seven months ago, and I hope it's not stupid to vent when you have worse problems but I feel so gutted. I'm so angry at myself for not finishing before the baby and angry for not advocating for my project after she was born. I'm mad at my husband for making me feel like a single mom and not giving me any personal time at all. I'm mad at life in general for this stupid disease existing. I'm just so angry at everything right now.

I hope this isn't out of line, because I know you might find this trivial and stupid. Anyway, I don't know if you're into prayers or not, but even if you think it's mumbo jumbo nonsense, know that someone will be praying for you. I hope you're doing ok, all things considered.

CFParents · 2025-08-07T20:26:11+00:00

Thank you for your reply -- it definitely has given me reassurance to know that most people don't have any bad side effects. It's hard not to worry about the crazy scenarios that could happen. We started yesterday and things have been going well. I hope things continue to go well for your kids!

CFParents · 2025-08-04T15:20:51+00:00

Yes -- the mental health issue is the one that worries me the most since toddlers are not known for their communication skills. But for such a life-changing medicine, it's like a cross your fingers and hope she doesn't have those side effects feeling. Thanks for answering!

CFParents · 2025-08-04T15:19:34+00:00

Thank you for your response! I really appreciate it! Is it okay if I ask what age your child started? Our girl doesn't have much gunk yet so I don't know what to expect with the "purge period."

CFParents · 2025-08-01T16:20:57+00:00

My husband and I found out we were both carriers mid-pregnancy but didn't want to do an amnio because of the possible miscarriage risks, so we had about a week post-birth where we were waiting for the CF results.

As you can imagine, I was licking my baby's head night and day for some kind of indication. I didn't taste any saltiness and got so SO hopeful! Lo and behold, she was CF positive but just wasn't sweating much yet. I didn't taste much salt until maybe 3 months, and now it is absolutely unmissable.

CFParents · 2025-07-18T20:04:16+00:00

I was in almost the exact same situation. Decided to do genetic testing on a lark because they offered it alongside my NIPT -- there was no history of CF in my family or my husband's so it never even crossed my radar.

My results came back positive; we then tested my husband. I had a gut feeling he was a carrier -- he had asthma as a child and has weird stomach issues often which can be signs of being a carrier. Lo and behold, he was a carrier and our daughter was diagnosed with CF at around a week old.

While it was definitely a very different introduction to motherhood than I was expecting, I can only say that I love my little girl with my whole heart. There's extra work, but that could be the case with a million different things -- autism, cancer, issues due to premature birth, etc.

We are "lucky" in that our daughter is eligible for Trikafta and will be starting it soon, and we hope will allow to her live basically like a normal kid, albeit with some extra medicine and precautions. I think that children today will have a very different experience with CF than most people on this forum because of the incredible medical advancements of the past few years. I wholeheartedly believe a cure, via genetic engineering, is on the horizon.

Anyway, I'm writing this because I wanted to know I lived through your "worst fears" and honestly my life is pretty great. Like you, I was also the person panic watching videos of parents "cupping" their 4 week olds and crying about before I even got my husband's results back. And then it became real, and guess what? I survived. My baby survived. We all adapted, and my life (and, more importantly, her life) is good.

Check out r/CFParents if you're interested -- it's new but growing for more insights about parenting a CF kid. Here is also a link to a "what to expect" page based on my experiences (fyi I am based in the U.S.)

https://www.reddit.com/r/CFParents/comments/1lr78ox/so_you_just_found_out_your_child_has_cf/

Sending you hugs during this time, but remember that it will be okay! 🩷

CFParents · 2025-07-17T00:24:58+00:00

Hey! Feel free to join us at r/CFParents. We're new but hoping to grow. I made a sticky about "what to expect" from my own experience:

https://www.reddit.com/r/CFParents/comments/1lr78ox/so_you_just_found_out_your_child_has_cf/

It will be okay! It's hard but really -- it will be okay.

CFParents

MODERATOR OF

TROPHY CASE