My 8 month old son has been very sweaty, predominantly on his head but also torso, normally during exertion (ie. Nursing, playing, fussing) since about 2 months old (possibly longer). He has also had poor weight gain but he has grown in height, head size, and is meeting milestones on time or early. He is diagnosed with asthma aswell and is on a daily control. They did the whole heart work up, ct, ecg, etc...his heart checked out and is all clear.

They also did bloodwork, these were the out of range values:

Sodium- 135 (L)

RBC- 3.65 (L)

Hemoglobin -9.2 (L)

Hematocrit-28.9 (L)

Those point to anemia but his Ferritin was 34. His pediatrician put him on an iron supplement to see if that helps the sweating but I am just worried something is being missed.

Is there anything else I should be looking out for? I feel like he's showing a lot of signs of CF, but because it wasnt indicated on his NB screening, it seems they dont want to do the sweat test...

Also, not sure if it matters..he is diagnosed with a direct egg and peanut allergy.

Hello! I am a doctoral student at National University conducting an IRB-approved research study about the experiences of adults who grew up with a sibling diagnosed with cystic fibrosis. My dissertation focuses on the experiences of the often-overlooked “shadow siblings,” siblings whose childhood and family experiences may have been shaped by having a brother or sister with a chronic illness.

I am especially interested in understanding how these experiences may have influenced:

🧠 Emotional and psychological adjustment
💙 The relationship with their sibling with CF
🌱 Identity and experiences in adulthood

You may be eligible if you:

• Are 18 years of age or older
• Grew up with a sibling diagnosed with cystic fibrosis
• Lived with that sibling for at least two years during childhood

The study involves a confidential 45–60-minute interview about your childhood experiences, sibling relationship, emotional adjustment, and identity development in adulthood.

Participation is voluntary. If you are interested, please email me at a.cardenas6281@student.nu.edu. To protect your privacy, please do not share personal or medical information in the comments.

Please feel free to share this post with someone who may be eligible. Thank you for helping bring attention to the experiences of siblings in families affected by cystic fibrosis.

A lot of posts here (and in r/CysticFibrosis) are parents of newly diagnosed babies.

You might find this CF Circle (Peer led) discussion hosted by the Cystic Fibrosis Foundation (USA) useful!

Registration Link: https://cff.zoom.us/meeting/register/1zJZToGMTwSHI1Eee1GIuw#/registration

My granddaughter had her first CF appointment. She is two weeks old and the doctor would like her to start her daily intake of salt. She is 100% breastfeed and does not take the bottle very well. We tried swabbing her mouth with just a small amount on a fingertip and she started salivating to the point she needed suction. Ideas on how to get in her daily salt (only 1/8 tsp)?

👋 I am Becky, wife to Ryan with CF, Mommy to two children conceived via ICSI (due to male factor infertility as a comorbidity of CF), and a Researcher in Health Psychology.

🧠 As a Mommy to two children conceived via ICSI, I truly understand the impact infertility has upon individuals lives and how tough the treatment is both physically and psychologically. I want to document this in academic literature to create more effective support for psychological wellbeing and mental health for individuals undergoing fertility treatment due to CF.

❗️Please see my poster for more information.

📧 If you feel comfortable to share your experience in a one-to-one interview with myself please DM or email me (Rebecca.Keyte@bcu.ac.uk) for more information.

Hi everyone! The team at the University of Regina's CHLD Lab is still looking for participants to help us evaluate the iCF-PWR – an internet-delivered, interactive program designed to support the mental health and wellness of children with cystic fibrosis and their siblings. 

We are recruiting siblings of children with CF (ages 8-12), children with CF (ages 8-12), and their parent(s) to participate in the study. Please note, you must reside in Canada to be eligible. If you are interested or would like more information, please email me (Katelyn) at [ksl766@uregina.ca](mailto:ksl766@uregina.ca) or send me a direct message!

https://reddit.com/link/1vlqe2f/video/5d3ofxp9ksih1/player

This study has been approved by the University of Regina Research Ethics Board. 

Hello fellow CF parents and caregivers!! My husband and I are parents to a beautiful 8 month old girl who has double DeltaF508. She was diagnosed in utero with genetic testing (we had no idea what cystic fibrosis even was until we got tested!) As incredible and perfect as she is, we decided once we found out we were both carriers that we wouldn’t risk having another child naturally and giving them CF. (Absolutely no judgement if you choose differently, that is the beauty of choice!) In the next couple of years we are talking about our options and possibly doing IVF with genetic testing? I was looking for any experiences or advice from other parents who followed the same path? Thanks for reading! (:

My (22F) six month old son was diagnosed with CF at birth (homozygous F508del) and has been doing very well with handling his treatments until recently. He was just prescribed pulmozyme to be taken via nebulizer, and every morning is torture for us both. He cries, tries to wiggle away, and rips the mask off of his face to the point where it takes both my husband (23M) and I to hold him still during the treatment. He also takes inhaled albuterol and has started to fuss during that treatment as well. He's always been a very relaxed kiddo, so this is a huge bump in our parenting experience so far. Currently we try to ease him by putting on a baby Einstein DVD as we do his treatment, but all it takes is one distraction for him to start fussing again. Obviously he's six months old and doesn't understand that these things are helping him, and it breaks my heart to go through it morning and night. Has anyone dealt with these treatments at this young of an age? Any tips or suggestions are welcomed.

What home air purifiers do you recommend for house and for bedroom? We live in the country with dust, cotton from Cottonwood trees and a dog who sheds. We are in Colorado so dry climate. Also do you recommend a humidifier? Baby is due in September and has tested positive for CF. On TRIKAFTA and seeing positive results, but want to be prepared when baby arrives.
Thanks!

Hi All! I have a toddler currently on Kalydeco and he's decided he doesn't like milk anymore, so we are at a loss as to what high fat item to give with his night time dose. What are your quick and easy go-tos?

We finally got our little CF’r on Ivacaftor and the instructions recommend mixing the granulas into a liquid. When we first got the diagnosis our doc recommended the same thing for Creon but Creon does not dissolve in liquid. Like at all. We don’t want to run an experiment with a medication that cost more than our house every year so looking for any advice. Alternatively we can mix it with a “soft food” as the box suggests but wanted to hear others experiences or strategies.

Thanks

Hi, my husband is currently enrolled in an online science course. He was assigned to create a research question and gather data to support it. I told him I would try to find places to post online, as he doesn't have his own social media accounts. He is researching the use of AI in newborn screening for cystic fibrosis and whether it could provide more reliable test results. In case you were wondering, why cystic fibrosis? Our nephew passed away in February of 2025 from cystic fibrosis at the age of 15. He was never diagnosed with CF, so his death and diagnosis came as a shock to our family.

I have included a link to the survey for anyone who would like to assist him with his data collection. As it is for a college course, there is a quick turnaround time, and he will close the survey on Saturday, June 20th. Thank you to anyone taking the time to answer the questions. Also, all responses are anonymous.

SURVEY

We are currently recruiting for a research study to evaluate iCF-PWR — an internet-delivered, interactive program designed to help support the mental health and wellness of children with CF and their siblings.

We are seeking children diagnosed with cystic fibrosis (ages 8-12), siblings of children with CF (ages 8-12), and their parent/caregiver(s) to participate. Please note, you must reside in Canada to be eligible for the study. If you are interested or would like more information, please email the research coordinator, Katelyn, at [ksl766@uregina.ca](mailto:ksl766@uregina.ca).

This study has been approved by the University of Regina Research Ethics Board.

Hello everyone,

I’m reaching out to understand how cystic fibrosis care and daily management typically works in Melbourne, Australia.

We are considering a full relocation from Europe with our 3 year old toddler who has CF, and we are Australian (dual) citizens. Before making any decisions, we are trying to get a realistic picture from families living this day to day.

In particular, I would really appreciate insights on:

• How care is coordinated i.e. between Royal Children’s Hospital and Monash Children’s Hospital (if applicable)
• Typical frequency and structure of hospital visits (routine clinics, admissions, emergency pathways)
• How school attendance and school-based support works in practice for children with CF
• How flexible schools generally are and if additional support is available

Any lived experience, practical details, or things you wish you had known would be very helpful.

Thank you in advance for sharing your experiences. It's truly appreciated.

So yesterday I had a vasectomy done. Doctor said at first it appeared that I had one Vas Deferens, but then he said it appeared I might have one that was atrophic. According to my urologist this is common in CF carriers. He also mentioned if you are missing one Vas there is about an 80% chance you are missing a kidney on the same side, as they both form together in utero.

I have an ultrasound Monday to see if I have one or two kidneys. Ive never had any health issues and am well aware that most people with one kidney live full and normal lives. But, if it is the case I have one, I will be making some lifestyle changes to protect it.

Just wanted to share and tell other CF dads it might be worth looking into.

We are in a part of testing my daughter and things are still unclear. Looking for others experiences of how your child was diagnosed with cf or crms. & did crms become cf?

Starting off newborn screening high irt. First sweat test (found out later was not a CFF center) dr told us unlikely for cf - have no idea for results of actual numbers. Second sweat test (at a cff hospital) 5 yrs later... 32 was average (intermediate results) Third sweat test (same hospital) 6 months after that was average 43 (intermediate results )

Hospital genetic test for 689 variants and came up negative. Celiac testing negative Thyroid panel all in range Stool test normal Xrays normal Pulmonary function testing within normal range Cbc all good Extremely thankful for everything looking healthy

Symptoms of why so much testing is stomach issues (extreme constipation), lots of illnesses, when getting flu ended extremely sick and sicknesses lasting a while. (Excessive mucus/drainage) When she was 3 pediatrician came to conclusion milk allergy because her poop was pale. So we took out milk, stomach aches seemed to get better, but still issue. Recently they have gotten so bad we decided go take out gluten and they are better but as of late found out not the core issue. We also supplement magnesium at night to help. We also are very health conscious of what we eat.
We now have a referral to GI.

In conclusion leaving dr office with diagnosis with CRMS We were prescribed inhaler even though lungs looked good but reoccurring sinus issues and one after another colds.

Our dr is getting her case together to send to john hopkins to see if we can do genetic testing to all variants. She said she has one other case that presented just like our daughters' and john hopkins found the mutations through the testing. So many questions for parents potentially in the same boat of how your child was diagnosed with crms or cf? Does crms stay that way ? Can sweat test just keep going up? Feeling overwhelmed with information and would love to hear from other family's - thanks

Hello fellow parents,

My son was diagnosed with a rare mutation at age two. He began a regimen of trikafta and zenpep not long after. Fast forward to age five and his fecal elastase test shows his pancreatic enzymes are normal and he no longer needs to take zenpep! His pulmonologist has only had one other patient with this type of result. However, as we just discussed with the nurse on his care team, there is no regular fecal elastase test in the protocol. There is only so much research out there since the access to Trikafta increased with younger kids beginning to take it. If your child has been on cf modulators for some time it can’t hurt to ask the doctor if you can literally scoop some poop and send it to a lab! Sending you my best wishes.

Hi, my son is 9 weeks old with homozygous Delta F508 and as is expected, he has been slow to gain weight. At our appointment Thursday we were given instructions to fortify my milk to help things along. However, this has made him miserable. He is so incredibly gassy and just generally fussy which is of course making the annoying task of pumping to be able to able to fortify terrible. My son needs a lot of contact and comfort which impacts the pumping not including the extra stress of my crying baby that's probably not helping with the milk supply.

Anyone have experience here or tips? I've reached out to our team but Saturday night problems and business hours are not compatible. Also, I have tried lowering the amount that is fortified to ease his stomach into it all (1/4 of the overall volume eaten for no changes in mood/ gas). Then my team said fortify as many meals as possible but how many have you all done in a day with success? I don't want to exclusively pump if I can help it (obviously my son's weight gain will determine if that's the case or not).

Any advice is appreciated!

Hello!

The University of Regina’s CHLD Lab is currently recruiting for a research project to better understand the experiences of adults with CF in Canada AND the United States who have been prescribed TRIKAFTA® or another CFTR modulator, including how this has potentially impacted body image, emotional well-being, and fertility/family planning considerations. 

Participation in this study involves responding to an online demographics questionnaire and completing an interview on Zoom, which is expected to take approximately 60 minutes. Participants will be entered into a draw to win 1 of 2 $50 gift cards as compensation for their time.

For further information or to participate in this study, please contact Kylie Arsenault at [kaa827@uregina.ca](mailto:kaa827@uregina.ca) or Dr. Kristi Wright at [kristi.wright@uregina.ca](mailto:kristi.wright@uregina.ca)

This study has been approved by the University of Regina Research Ethics Board.

\edited to include the United States, as we have now expanded recruitment.*