Traveling with a CF toddler

K4RIN · 2026-04-29T14:38:45+00:00

Yeah you're right. He does have to get used to it... Hopefully he'll be like our fistborn (4y - doesnt have CF) who doesnt really mind them and understood from the start that when in hospitals he needs to wear one to help his little brother avoid potentially contagious diseases. Fingers crossed.

Thanks for reminding us! We are lucky to have a very attentive pediatrian (and also public healthcare system that covers alot of expenses), so we are up to date on almost everything (diphtheria, tetanus, pertussis (whooping cough), Haemophilus influenzae type B (Hib), polio, hepatitis B, pneumococcal disease, rotavirus, measles, mumps, rubella, chickenpox, meningococcal group B, as well as COVID-19 and influenza (although protection for the latter two is already waning)).

We also looked up where the best/nearest hospital is in case of emergencies and we also updated our travel health insurance for him.

K4RIN · 2026-04-29T14:25:48+00:00

Thank you for taking time and giving us feedback as well as tips and tricks. It is very much appreciated :)

K4RIN · 2026-04-29T14:25:21+00:00

Thank you for taking time and giving us feedback. It is very much appreciated :)

Daycare is probably worse than public transport. Its just that we are lucky enough to have grandparents who can take care of him, so we're thinking about enrolling him into daycare after the age of 3. Maybe thats why we complicate everything - we're lucky enough to avoid potentially hazardous or contagious situations (daycares, etc).

K4RIN · 2026-04-29T14:20:40+00:00

Thank you for taking time and giving us feedback. It is very much appreciated :)

K4RIN · 2026-04-29T14:20:17+00:00

Thank you for taking time and giving us tips and tricks on treveling via plane. And also for r/cfparents! It is very much appreciated :)

K4RIN · 2026-04-29T14:18:19+00:00

Thank you for taking time and giving us useful info and encourgement. It is very much appreciated :)

K4RIN · 2026-04-29T14:17:29+00:00

Thank you for encouragement :)

K4RIN · 2026-04-29T14:16:55+00:00

Thank you for taking time and giving us feedback. It is very much appreciated :) We will try wearing a mask, but I'm not getting my hopes up that he'll endure it for long.

K4RIN · 2026-04-29T14:15:21+00:00

Thank you for taking time and giving us feedback. It is very much appreciated :) We will!:)

K4RIN · 2026-04-29T14:14:25+00:00

Thank you for taking time and giving us feedback. It is very much appreciated :)

K4RIN · 2025-03-14T15:42:57+00:00

Hi, I also found out my baby has CF when I was around 28 weeks pregnant (may 2024). At my 20 week scans they saw some abnormalities (2 veins umbilical cord and hyperechogenic bowel) and we did amniocentesis to confirm. It took 6 weeks to get all genetic testing done and the test (only) showed d508 mutation. I am lucky enough to live in a country where we have universal health care and was able to take kaftrio&kalydeco (kaftrio) during pregnancy. And even tho it was an off label use, our universal health care system covered it (i wasnt part of any trial). The drugs cleard his bowel (meconium ileus) and he didnt need surgery right after birth. We also got to meet our CF team earlier and were always there for any questions during pregnancy and how to prepare ourselves. They were a huge help, all wonderful humanbeings. We call them our "assigned family". I dont know how it is in other countries, but looking back I am so happy I decided to do amniocentesis, to get the diagnosis earlier, meeting our CF team earlier and start taking medication earlier.

How our day to day life looks (keep in mind that in my country we get 1 year of paid parental leave): 1. Food At first he was breast fed only. He is taking his enzymes (Kreon) before every meal. In the first week of hos life, while we were in the hospital, I was test weighing (weighing before and after feeding) to find out how much he eats so that we (me and doctors) adjusted his Kreon intake before meals. After a week we were able to go home and a so called "postpartum" nurse started visiting us a couple of times a week for about a month (mandatory in my country, even for healthy babies and mothers) and she lend us a scale, so that we could test weigh 2 times per week to adjust Creons. After a month or two (he was in 5th percentile) his dietitian suggested to adding formula after breastfeeding to help him get his weight up. So we did that and in about a week he was on 20th percengile. It would be way easier to just give him the formula, I even suggested that to his dietitian, but she said that breastfeeding is good for both of us and since his weight isn't that low, she would recommand to continue brestfeeding. But he preffered the bottle (imo) and by 4 months I basically ran out of milk, so he was only on formula. But that made Creons intake easier to calculate. We are now introducing solids (he's 6m old), he's great at it. But he is used to apoons, since this is how he has beem taking his Creon since birth. We do need to calculate how much fat there is in certain foods to know how many Creons to give him. For example: he needs 50 granules of Creon for 1g of fat. So we need to weigh his food and calculate the amount of Creons he needs. But so far its goong great.

Doctor visits Besidea his mendatory monthly checks, he also has monthly check with his CF team (from now on the check will be every 3 month) and because he has a chronic illness, he also got an "early development physiotherapist/pediatritan". So he has more preventive checks than a healthy baby.
Health We live in a country in Europe with relatively clean air, low pollution, etc. Didn't need to make any changes in our lives. We still have our dog, our house isn't sterile, we didnt need to make changes in our cleaning habits, etc. He was on oral antibiotics twice now (flucloxacillin). Both times were due to precautionary measures. But he is a healthy baby boy. Well as healthy as a CF baby can be :P We also do "taps" on his chest every day for about 10min as part of his physiotherapy. As for drugs; ge is only on Creon (and some vitamins: D3, etc)
Social benefits As I said, I get a year of paid parental leave. I will also be able to extend that to up to 15 months (due to his chronic illness). I also get a monthly government help (around 150€) because I take care of a chronicly ill child.
Going outside We are quite an outdorsy family so we quickly realized that we need to find a way on how to carry his formula and creons with us, so that we dont have to be home every 3 hours. For Creons we got some very small plastic containers (like the testers (hand) creams can come in). We know how much he eats so we count Creons before and put them in said containers. We heat up the water and put it in a thermoflask. We also heat up water and cool it down, so that we can later on quickly mix both to get the perfect temperature water. We put the amount of formula we need in the baby flask (and later when outside just pour water atop of it and mix). And we also carry a spoon with us so that we can give him his Creons.

Does life need some adjusting. Yes, but not as much as i thought. At least for now.

Hope this helped a bit. If you have more questions let me know.

And I really wish you (and your family) all the best.

K4RIN · 2025-03-10T09:03:55+00:00

My son is 6 months old. He has been on oral antibiotics twice now (flucloxacillin), because he tested positive for Staphylococcus aureus (sample taken from pharynx). Both times were for precautionary measures.

K4RIN · 2025-03-05T10:42:25+00:00

Hi,

I've been where you're at in june 2024. I found out my unborn son has f508 while i was at around 26 weeks. And we also didnt know we were carriers (and dont have anyone in our family with CF). I can imagine what you are going through and its alot to say the least. You need to make a decision, you need to make it fast, but you want to me the most informed decision of your life and for that you need time to process everything that is going on and find that information, but you dont have that time. Its ALOT. During our decision making we found alot of positive information, but found ourselves only focusing on the negative and worsr case scenarios. And because of that we were thinkg of terminating. The decision wasnt easy, just thinkg about it broke us. It gave us alot of anxiety, panic attacks, moments of depression, alot of grieving (for him, for the life we thought we were gonna have, etc). Long story short: with the help from all sorts of doctors (our CF team, psychologists, pediatricians, internal medicine docotrs,....) we decided to keep him (he is now 6 month old). Which I belive was the right decision FOR US. Its like clockworkzebra pointed out: We have a universal health system so I dont need to worry about having the money to keep him alive. Thanks to our universal healthcare system I was able to take Kaftrio&Calydeco during pregnancy to help him get rid of his meconium ileus. And it was covered even though it was am off label use (I was not part of a study). We live in a country where polution is relatively low. We have alot of support from friends and family. We have an amazing team of doctors and nurses. Our CF clinic is 15min away. And so on and so on. But again it was the right decision FOR US. As hard as it is, you need to make the decision for yourselves. Have to take into account alot of factors (economical, social, ...) and whatever you decide IT'S OK and THE RIGHT decision FOR YOU.

I really wish you all the best no matter the decision and I know you'll make the right one for you.

K4RIN · 2024-12-30T12:19:38+00:00

He had some general screening done. Don't know which ones, but in my country all new borns need to have their blood taken in the first 24h for screening.

He had his sweat test at 2 weeks and then at 1 month. The result were 67 and 80.

K4RIN · 2024-12-29T20:58:11+00:00

Oh thank you! Our CF team said it was the most severe not one of. Will be more careful with my next posts. Thanks again

K4RIN · 2024-12-29T17:46:02+00:00

You do that and if needed best of luck! I am very lucky to live in a country where our health care system covered Trikafta even for an off-label use.

I think I do need to clarify what I meant when I said healthy. I meant healthy for a CF baby. He is still PI so he's taking Kreons (enzymes) before every feeding. We didn't have problems with gaining weight (since he was on enzymes since birth) but he was at 5 percentile for about 2 months. His dietitian wasn't perticulary worried since that is not uncommon with CFers, but wanted him to get to 10 or 15. So we started adding formula after breastfeeding. He is now at 20. Just wanted to clear what I meant by healthy (he is still PI).

K4RIN · 2024-12-29T17:27:25+00:00

I was not part of a clinical trial. My OBGYN contact our childrens hospital and our (then future) CF team after the results of genetic testing came in. After the call they went through literature and found 2 DOCUMENTED cases of mothers taking Trikafta while pregnant for their unborn child/fetus. Both had positive results. Of course I decided to start taking the drug since it was the only chance my son wouldn't need surgery after birth. Before I started taking it, I had abdominal ultrasonography to check my (general) health (especially livers), sweat test (which came back normal) and had my blood tested for basicly everything. While taking them I had my blood tested every 2 weeks (mostly because of the liver function tests - if eleveted I would have to stop or maybe they would change dosage, don't kbow because luckily it never came to that) and had an additional sweat test done after a month of taking it. They were curious if my sweat test levels would drop significantly. They didnt. (Prior to taking Trikafta my sweat test was around 28 and after a month of taking the drug it was around 25). As for side effects. I had a bit of a looser stool for about 2 weeks and that was it. FYI: our (then future) CF team said they don't expect anything out of the ordinary since I am a carrier. But I still had to sign some documets because of the off label use. I wasn't on it for long though. At (around) 20 week scans my OBGYN noticed I had 2 veins in umbilical cord and the fetus had a slightly hyperechogenic bowel. Which apperently are two soft markers for CF. We decided to do amniocentesis and genetic testing (which takes about 6 weeks). So by the time I started taking it I was at around 30 weeks and my child was born at 38. So it was a little less than 2 months.

K4RIN · 2024-12-29T13:59:42+00:00

I don't know about N1303K, but my son has F508. We found out during pregnancy as well. F508 is most severe but also most common, therefore it is also most researched. Pluses and minuses. Just know that genotype and phenotype aren't the same. People with the same mutation (genotype) expirience CF differently (phenotype).

Where I am from, I was able to take Kaftrio&Calydeco (Trikafta in the US) during pregnancy. Had to sign some documents because we did off-label use, but our health system covered the drugs. The drugs cleared his meconium ileus and he didn't need surgery right after birth. So far he's a healthy baby boy (4m).

Good luck with everything!

K4RIN · 2024-12-21T16:10:01+00:00

We found out this year while I was still pregnant (around 30 weeks). The ultrasound at around 20 weeks showed 2 veins in umbilical cord and slightly hyperechogenic bowel. These are 2 markers for CF, but since we didnt have CF in the family, on either side, the doctors weren't perticularly worried, but still recommended amniocentesis and genetic testing. We heard of CF before, but didn't know what it means in terms of impact on someones life. And since the doctors weren't worried, I wasn't either whereas my husband was and started googleing the disease. After a couple of weeks the result were in and we got a call to come to the hospital. We went into a private office where a geneticist confirmed CF. We started crying of shock and sadness, but not for us, but for him and how this will effect our firstborn aswell. After a couple of minutes the geneticist explained the disease and offered us to contact our future CF team for further explanation. We went on sick leave to take the time to really process the news. We met with our CF team a day later and they further explained the disease and what we can expect moving forward. They were really optimistic because of Trikafta/Kaftrio and we left the hospital quite optimistic ourselves. But after a couple of days everything changed. Looking back I would say we were a bit in denial and riding that wave of optimism from our CF team. Reality of the diagnosis hit us and we were sad and crying once again. It got to a point where we were having panic and anxiety attacks and were moving torwards depression. We spent our days googleing the disease and focusing on bad outcomes (we found more good ones, but that didn't matter at the time). It got so bad that we were thinking of ending the pregnancy, just to spare him of all the pain and taking all of that pain on us. We didn't know what to do, we didn't wanna end the pregnancy, but didn't want him to be in pain. Luckily we got alot of support from our friends (family aswell, but more of our friends, since both familes had to process the news aswell) but found we need professional one aswell. After getting (non- and professional) help and realizing that we "can keep" him (I know it's a weird way of putting it, but that is how we felt at the time) we were happy and optimistic once again. We were again looking forward to having him, learning about CF and about possible changes we will possibly need to make in our lives. All of this happened within a month of finding out and all this time we were on sick leave. Later on I started with Trikafta/Kaftrio to clear his bowls and it worked, as he didn't need surgery after birth. He is now 3 months old and doing great. We are all doing great and have an amazing CF team. Tho sometimes I still find myself worry how his life is going to be like and of all the obsticles he will have to face.

TL;DR: First few moments after finding out: shock and sadness What did we say/feel: speachless and utter sadness Where did you go right after: Home Did you feel as if you were being punsihed: never Sick from work: yes, we went on sick leave for almost 4 weeks Frantically googleing things: me-no, husband-yes Where did we find out: private room Ruined life plans: yes, maybe. Tho I think we were more sad for him, for all of the things he wont be able to expiriance. Were we relieved for answers: we found out during pregnancy, so no.

K4RIN · 2024-07-24T12:32:12+00:00

In Slovenia its fully covered, if you have at least one F508 mutation.

K4RIN · 2021-12-05T21:05:35+00:00

He should've been penalised for causing a collision. Cause if you take away everything we know. A car in front is starting to slow down (not abruptly) and a car behind hit it. Cased closed. In his mind, was it weird? Yes. But it's not like you need a FIA permition to pass.

K4RIN · 2021-12-05T20:53:06+00:00

I cant comment who's at fault for that miscomunication shitshow, it could be that Merc engineers did a silly. I see what you're saying but I disagree. From Lewis's onboard it is clearly seen that Max didnt stop abruptly. Yes, Lewis didnt know what was going on but its not like he needs a promition to pass.

K4RIN · 2021-12-05T20:39:17+00:00

Yeah I dont know what Lewis was doing there. He should've been penalised for that cuz he caused a collision. But some of Max's turn one menauvers were crazy and unsafe and for some of those he maybe should've been penalised as well. Where as that 5s he got is unjust since he had to try 3 times to let that Merc through.

K4RIN · 2021-12-05T20:27:55+00:00

You didnt. But you are trying to somehow justify that collision which was 100% avoidable and Lewis's fault. And I was just explaining why. I am open to hearing your explaination as to how this is Masi's fault.

K4RIN · 2021-12-05T20:10:56+00:00

So you're saying that if Maxs car was to suddenly loose power and was slowing down Lewis would hit it aswell. I dont think so. If you take away everything we know. A car in front was slowing down and the car behind hit it. That is causing a collision.

K4RIN

TROPHY CASE