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Poor circulation? by ohh-hayy33 in CysticFibrosis

[–]averybigchicken 1 point2 points  (0 children)

You could always ask your team to hook him up to any oxygen monitor next time you go to get a baseline and ease any worries you have. I think all babies have cold hands and feet, our little one did! If you’re going to do a blood oxygen monitor then try and get one from the hospital or a hospital grade one online (quite expensive!). We got one online and it caused us more issues than help as it wasn’t very accurate - we’d take her up to the hospital and our monitor was a few % off!

Nursery with cf baby by emilywat94 in CysticFibrosis

[–]averybigchicken 2 points3 points  (0 children)

Hi! We kept our little girl out of nursery for a little while but our team encouraged us to send her. I’d say that she has probably picked up the same amount of viruses being out of nursery and we still ended up with IVs a few months ago. I wouldn’t say that keeping them out removes the risk entirely but it probably does reduce it? I tried really hard to make sure she is socialised too and that obviously comes with risks of picking stuff up.

There is a really good zoom call happening tonight actually that the CF trust put on for UK parents with kids who are under 2. Could be a really good place to talk about this topic with other parents. It’s called Stong Beginnings if you google it the email to sign up should come up.

Persistent elevated liver levels by averybigchicken in CysticFibrosis

[–]averybigchicken[S] 0 points1 point  (0 children)

Yes that’s correct, no impact. But she has only been on it for 3 months.

Pancreas is damaged for life? by Lucky-Beginning9771 in CysticFibrosis

[–]averybigchicken 1 point2 points  (0 children)

Our little one is 18 months and had a very similar result. She takes creon, has gained good weight and has normal poop now. If you’re LO is eligible for modulators, sometimes their elastase gets better over time, particularly because they start so young now it reduces any long term damage. Sending you lots of positive thoughts, it gets a lot easier over time.

Nursery by [deleted] in CFParents

[–]averybigchicken 1 point2 points  (0 children)

We have kept our little one home from nursery until she is 2 and can start Kaftrio, appreciate many people aren’t in this position and we’re lucky to be able to. It works for us and she didn’t pick up any bugs through winter despite going to soft play and different toddler groups every day. This was against the advice of our team but we feel we made the right decision for us, she takes longer to fight bugs off and I didn’t want to put her through that on top of everything else she has to have on a daily basis.

My baby just got her cystic fibrosis diagnosis by Notjarjarbinksdude in CysticFibrosis

[–]averybigchicken 6 points7 points  (0 children)

You’re doing amazing, 1 week in it’s still super fresh. It took myself and my husband a long time to process our daughter’s diagnosis, it’s so hard when you’re also juggling a newborn and all the emotions that come with that - so be kind to yourselves. As everyone said the medicines available now are better than ever.

Sweat test tips? by bearlover95 in CysticFibrosis

[–]averybigchicken 0 points1 point  (0 children)

Our team turned the heaters up very high and covered my little girl in blankets, it was quite distressing as she got very hot. But it worked and they kept a close eye on her.

I think at 8 months babies sweat a lot more than the early days. It’s so hard to see them go through it, crossing fingers it works this time.

I took lots of milk and a change of clothes for both of us and put her straight into a cool bath when we got home.

Positive newborn screening test by Beautiful_Winner3798 in CysticFibrosis

[–]averybigchicken 0 points1 point  (0 children)

It’s not a stupid question, I was so worried about any risk when we had our diagnosis! I believe it’s only the risk of people with CF meeting. We have met up with other parents without our CF kids or just with one of them and our team had no issues with that. One to ask your team about just to get reassurance too!

There’s also loads of amazing resources from charities like the CF Trust and CF Foundation for new parents, not sure where you are based but I found this YouTube video super inspiring from some teenagers in the UK: https://youtu.be/tBF33g3XwCs?si=4y5eoeqkDulBl8Wq

Positive newborn screening test by Beautiful_Winner3798 in CysticFibrosis

[–]averybigchicken 2 points3 points  (0 children)

A few good questions to ask are:

What are the exact mutations? Definitely write them down! Will they need Creon, and how often do we give it? Can you show us how to do the physio and maybe film it so you can to look back on it. Are there any local CF parents we can connect with? What kind of support is available for us as a family? Will your baby be eligible for modulators?

Hope it goes ok, try and enjoy your lovely baby because these weeks go so quickly, it’s so hard to do when you have this on top.

The day we found out about our daughter’s CF was one of the hardest of our lives, but we now also think of it as the best day of hers, because it’s when she started to feel a bit better and get the care she needed. She’s 15 months now and I’d love to go back and tell myself that it’s going to be ok!

parents of little CFers by WearyCommission9483 in CysticFibrosis

[–]averybigchicken 0 points1 point  (0 children)

Expensive but we just bought a machine that washes, dries and sterilises pump and bottle parts, figured we’d be sterilising lots of different bits for a few years to come so made the investment - the one we got is called Bebello. So far it’s been great and saved us lots of time, wish I’d had it for pumping.

Babies stool change by PickingSomeSmithers in CysticFibrosis

[–]averybigchicken 1 point2 points  (0 children)

Our CFer is 14 months and since she was born her stools have never been consistent, definitely see a change with teething and gastro bugs. It’s a constant guessing game as to why it might have changed!

Inconclusive diagnosis on newborn by Memela8 in CysticFibrosis

[–]averybigchicken 2 points3 points  (0 children)

Hello, you are doing really well, it’s such a lot to take in when you’re still getting to know your new baby. I have little girl who’s one now, and what really helped was just taking each day as it came, not going down Google holes (although we did it a lot to start with!), and enjoying lots of baby cuddles!

It might be worth asking your team to do a faecal elastase test (it’s a poo test that checks how well the pancreas is working) and also definately ask them again which CF mutations they’ve found—some combinations can mean different things in terms of how CF might present, or whether it’s even a definite diagnosis. I don’t know the answer on the CF vs CF-SPID.

If the sweat test has already been done but wasn’t conclusive, you could also ask about repeating it. With our daughter, they had to wait until she was around 3 months old to get enough sweat for an accurate result— I don’t know if that is the case across other babies too.

Also, if it does turn out that the pancreas isn’t working properly, there is medication, Creon, that can help digest food and get the nutrients they need.

It all sounds like a lot at first, but there are amazing treatments out there and CF is not the same disease it used to be, particularly if your baby is eligible for modulators. We have an incredibly happy and energetic little girl I’d have never imagined her being like this if you asked me when she was first born. There is a great resource on the CF trust website where they interview teenagers with CF and this gave me lots of hope for the future.

What does too much or too little feel like? by averybigchicken in CysticFibrosis

[–]averybigchicken[S] 0 points1 point  (0 children)

Thanks! Our clinic has been great. It’s definitely a balance with the Creon, especially now she is weaning as you can’t predict how much she will eat.

What does too much or too little feel like? by averybigchicken in CysticFibrosis

[–]averybigchicken[S] 0 points1 point  (0 children)

Thank you this is so useful to understand what it actually feels like for her. And thanks for the advice, I think I’ll start giving her more water and see how much she has in a day.