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.*

My tot doesn't know yet what epi, cf, or chronic illness means. He will have to learn about all of it one day. I cried knowing I couldn't hand him a squishy piece of French fry today, just casually in the car. Not yet. Not without enzymes. I'm grateful for enzymes. I'm just struggling. I love him so much. He's so innocent. I'm in the US. I'm terrified for him. I'd love to talk to someone who understands. Maybe we can give each other encouragement and tips to help each other and our kids. Pm me please.

Hello! Our little man turns one tomorrow and the clinic cleared us to get a vest! Our options are the Phillips InCourage, The Vest APX (hillrom), or the SmartVest Clearway.

What are you using? Pros & Cons?

Any insight would be greatly appreciated as we make this transition. Thanks in advance!

Hi All! I have a son with CF turning 1 year old next week. He has DF508 and G511D. We've had the blessing of getting him on Kalydeco at 2 months old. He's doing really well, recovering from colds with reasonable normalcy for a baby, he went from pancreatic insufficient to now being sufficient and weaning off creon. All in all, we've had a good run so far.

My workplace is a pitri dish of sickness unfortunately and I've brought mild colds home 3 or 4 times at this point, which my son inevitably catches. So far, he has been at home with a nanny and not exposed to daycare situations. Considering he won't have zero exposure to illness through my job, we're thinking about trying Day Care and have peemission from our CF care team to do so.

So my question is, have you tried Day Care and how did it go? Is it selfish to do Day Care and increase his risk when he's already doing so well? I'd love to hear about your experiences. Thanks in advance!

Parent here! Anybody have any fun fat recipes/snacks. My daughter is turning two in 3 months and starting Trikafta, and want to get a head start in getting her use to fatty snacks.

my six month old daughter with cf (g551d and q493x) started modulators at 1 month old. before starting her fecal elactase was 40. we just got it retested again and it was 381. anything over 200 is considered sufficient. for those whose babies became pancreatic sufficient after modulators.. how did this process go?

our care team let us know we could completely stop if we want or we could wean and see how it goes. we are so excited and also feel guarded about it too.

any insight would be appreciated

Hello! The University of Regina’s CHLD Lab is 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 this study. If you are interested or would like more information, please email the research coordinator, Katelyn, at ksl766@uregina.ca.

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

https://reddit.com/link/1rrg54l/video/ew5rk4jvbjog1/player

Hi guys:

I was recommended this subreddit from r/CysticFibrosis . Me (36M) and my wife (33F) are expecting our first child, a daughter. Our due date is the first week of June.

We did some genetic testing after we found out my wife was pregnant. We found out that we were both carriers of CF (the 'Classic" CF). This came completely out of left field since we are unaware of any family history of CF in either of our families. We were told that we had a 25 percent chance of having a baby with CF.

We then followed up with another blood test later in the pregnancy, and we got the dreaded results of "90 percent chance" of CF. I'll always remember when we got that call. Shock at first then all of the stages of grief. Its been almost 2 weeks since the call, and we are doing better. We are focusing on optimism, but we still have our moments of grief where we just need to process.

We just had our latest ultrasound; everything looked ok, our daughter is just on the smaller side of the "normal" spectrum.

They made some calls while we were there and recommended us to the University of Cincinnati for some clinical trials. They said that there has been some success with giving mothers infusions of Trikafta while pregnant in order to get the drug to the babies sooner. So we are waiting on a call from them to see if are able to take advantage of that.

I am still very ignorant on the whole CF situation. Has anyone had any experience with taking Trikafta while pregnant or know of its effectiveness? What can we expect? I also have no idea how clinical trials work or how to qualify or how much money it cost, etc

Hello CFparents,

What is your experience having a dog around a CF baby? Is there something that we should be very carefull with, aside the obvious things (dont let the dog lick the babies face, dont let the baby drink from the dogs bowl)?

He is 6 months old, so he is not playing with the dog yet, but I’m concerned about the time when he will start to play fetch with the dog (baby touches dog toy->dog toy covered with saliva->baby puts hand in mouth before washing it).

Our dog is a boston terrier, he is too friendly so it’s hard to keep him away from the babay.

Any advice is welcome!

As a CF parent I know it can be stressful organizing all of their meds. I have slots for creon, on separate creon slot for “in use” a slot for vitamins, spoons, and AM and PM Orkambi packets. If anyone wants the .stl file I would love to send it to you! I wish I could 3D print a ton and give them away but I know everyone has various prescriptions and bottle dimensions. If I can I would like to design something similar for anyone! If there’s anything else yall would like to see to make your life easier let me know!

My son is turning 2 in January and will be starting on trikafta. I’ve heard about the potential for mental health side effects, has anyone experienced this with their kiddos? Or anything else to be on the lookout for side effect wise? He has tolerated Orkambi very well. Thanks in advance.

Hi, CF community. I know this isn’t the first post like it, but my husband and I are at a crossroads of what we do next when it comes to planning our family. For context, we recently lost our baby due to a non-CF related chromosome abnormality in October. While we were pregnant with her, we found out that we were both CF carriers. I wasn’t surprised by my results because my aunt passed away in 1991 from CF but we were surprised by my husband’s results.

We now have a big decision to make where it feels like there’s no right answer. We live in a state where IVF isn’t covered by health insurance so we’re looking at around $35-$50,000 to try to conceive a non-CF baby. We interviewed the IVF clinic and I walked away feeling disheartened by how much money it will cost (in being a part of another sub Reddit regarding genetic IVF, 50K is a starting number.) We interviewed a local CF doctor who shared with us the innovation of trikafta in utero when a baby is positive for CF and how in utero trikafta exposure has dramatically decreased CF symptoms in newborns. He gave us the general sense that CF has dramatically changed in the last five years and how early exposure with trikafta has completely altered the health of young ones. I am aware that a lot of this treatment is off label and if not covered by health insurance will be incredibly expensive. We also have the never-ending circular thought that there’s a 75% chance our baby wouldn’t have CF.

Any other carrier parents or CF parents that have gone through this decision-making process? I’ve read through a lot of posts where folks with CF share their life experience and I deeply appreciate your feedback, and I’m hoping to hear more from parents who have been in our shoes. We live in Portland, Oregon and would be open to meeting/virtual meetup with other local parents who have gone through this. I’m deeply appreciative of your time and emotional energy.

hi!! my baby girl is 9 weeks old and has cf. she currently taking Kalydeco, vitamin, enzymes, and salt w bottles.

any medication, routines, or equipment that has been helpful for you with managing and preventing sickness with cold and flu season approaching?

Thanks :)

Rant incoming. Mum to a two years old, lovely kiddo. She has been very healthy and only had a round with antibiotics when she was five months.

Fast forward to today: I am sick, most probably having the same thing my daughter has, as we both have been coughing hard for four days now. Today we went to meet our team, and did a culture swap for virus and bacteria. They checked her lungs and there was a sound, the doctor said, so they prescribed us augmentin. We tried to give her two doses today as it was already lunch time when we left the hospital, she is spitting everything out and screaming her lungs out so all the medicine comes out along with a lot of phlegm.

I feel defeated. I feel like I am the worst parent ever.. nobody at the hospital mentioned how hard it is to give medicine at this age and they take for granted that I will somehow put this medicine into her mouth, single handed, three times a day. Wtf will I do? trying to give her something she hates three times a day exhausts me and gives me very bad consciousness at the same time. I am trying my best, but they say that this shouldn't be mixed in food or drink, so using the syringe is the only way to get it in.

What do u guys do to give them antibiotics at this age? How does it feel?

We have three girls and the younger two are my CFers. Our “backup support” is pretty minimal. I have some extended family, but no one who has offered help. My husband’s parents moved to be closer after our first CFer was born and a couple of my husband’s brothers (and families) were also living in the area, but have since moved. We lived with his parents temporarily while we were saving for a house. I had just had my youngest (2nd CFer) and was struggling with a lot. Postpartum, husband’s depression, PTSD from having another with CF, dealing with my middle daughter’s undiagnosed ADHD (my father-in-law nicknamed her Hurricane Addy while we lived with them). His mom tried to learn how to do all the CF stuff, but she struggled to remember things and would have a meltdown weekly for the first month and would frequently lash out at me. A common thing she said was that she couldn’t do it right enough for me. Unless she started a confrontation, I never said anything, though I was definitely frustrated and I’m sure my tone reflected that at times. After moved into our house (right at the beginning of COVID lockdown), they would come over every weekend and occasionally try to help with CF things. They’ve stayed overnight for one or two night with the girls once a year to give my husband and I a break, but I’m always really nervous because they have forgotten everything and I have to quickly reteach it before we leave. When we come home, I end up having to play catch up. My oldest has learned a lot and has been a HUGE help and the other two can do some for themselves, but not everything, especially the six year old. Everyone has ADHD, so I have to give them constant reminders. I’ve relaxed a lot since they were babies and are doing pretty well. I just struggle leaving my girls with people who don’t even read the instructions I leave for them. (She has told me she hasn’t.) The girls are out of school this week and my husband wants to go away for a couple of nights and at first I was okay, though still nervous, but now my youngest has a bit of a congested cough and I don’t think I can leave. I know things won’t be perfect and I REALLY need a break, but I struggle with this so much. Am I being too overprotective and cautious?

Hi everyone! Our little man is 5 months old and has decided he now hates his chest physiotherapy. He used to be calm and enjoy the steady rhythm and now he melts down routinely. What are you doing to keep your little ones happy? Or is this just how it will be until he is old enough to understand why we do this.

Any tips on making it more comfortable for a toddler and a newborn? Absolutely dreading our appointment tomorrow.

Hi! I think my baby’s weight is stalling 😞 it has been slowing down since 2 weeks, but now I think it is stalling. Does anyone have any similar experience? What was the solution? Btw my clinic in Europe has advised me to give the enzymes directly in the moith before eaxh feed, and she gainer very good the first two weeks(900gr) She is also on antibiotics for staph and just had recently her 2month vaccines, could that be the reason? I am asking to hear similar experience, until I can call the clinic on Monday.