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Cystic Fibrosis...any threads??

(55 Posts)
littletommy22 Wed 13-Jun-12 20:56:05

does anyone know if there's any active cystic fibrosis threads?

Shineyshoes10 Sat 02-Jan-16 20:52:20

burying their head in the sand not burying their hand. Really should proof read posts.

It's good the salbutamol inhaler worked well. Hopefully if he's improving and you think it's a virus this particularly difficult spell will be a blip.

You can have salbutamol either as a neb or the inhaler as well as DNase/hypertonic saline before physio, might be something worth bearing in mind for the future.

He doesn't have it in a nebuliser but he does have a hypertonic saline neb before physio and Pulmozyme neb before evening physio, he had a lung function of 55% when he went on to the ward on NYE, they gave him 10 puffs of the blue salbutamol inhaler through a spacer and 10 mins later it was 65%. He sits between 65-70% normally so I was quite impressed that I brought it up so much.

He seems to be a bit better today so I'm hoping he caught the virus that DP and DD had and is now getting over it.

Shineyshoes10 Sat 02-Jan-16 17:29:20

It's a minefield trying to show them that burying their hand in the sand actually draws more attention in the long run. He's just the right age to think he always knows best as well wink.

Glad the inhalers working. Does he have a salbutamol neb before physio? Could help him clear more sputum so he's not coughing as much in front of other people.

I hope talking to the consultant helps. I wonder whether IVs and a course of prednisolone sooner rather than later to try to get more on top of things would be better long term than waiting when he might need more meds/longer courses.

llhj Sat 02-Jan-16 15:18:07

Sounds so tough, my thoughts are with you. Best of luck with the consultant.

It's ok I'm open to just chatting in general both suggestions and general chatter are welcome, especially from someone who knows what it's like in some way.

He does find it embarrassing, he hates coughing in front of people outside the home and he won't entertain the idea of talking to anyone about cf and what it entails.

I'm hoping to talk to his consultant on Monday, they've all been off for the Christmas break, we have annual review in March too which is always a good chance to discuss everything at length.

He's started a salbutamol inhaler at the hospital last week which seems to be having a positive effect so that's something.
I think the next thing to think about is steroids which I know they like to hold off on for as long as possible but short course might pick him up enough to stabilise him for a while.

He's not due ivs until March which seems so far away since he's already so unwell.

Shineyshoes10 Sat 02-Jan-16 14:29:48

You've probably already thought of this but could he try a different reflux med or add another in.

Is he open to being reasoned with? Could you (or someone from his team if he's more open to talking to them than you) explain you know he doesn't like the taste but spitting it out means he hopefully won't be as sick when coughing which can't taste nice either. Embarrassment of spitting it out in front of others might not be helping.

Please do say if you'd rather have a moan and someone just to listen rather than suggestions I know sometimes all you want is someone to listen.

He is on Omeprazole already, quite a high dose for his weight. He swallows everything which doesn't help, he doesn't like the taste of it so doesn't like to spit it out.

Shineyshoes10 Sat 02-Jan-16 00:27:28

Sorry you're all going through this. This time of year makes dealing with eating problems even harder with so much focus on food. Controlling his food intake is one of the few things he has control over but you're so right the attitude isn't on. It's hard not to focus on the lack of eating when you know it's so important isn't it.

Does he have reflux? If so could you increase meds to hopefully reduce the frequency of the vomiting when coughing. I've found reflux makes it worse. Also is he sometimes swallowing what he's coughing up?

DS is coping ok, it's a gradual decline but time between ivs where he is well has got shorter and shorter.

Things like walking from room to room leave him sounding like he's run a marathon.
He's not helping himself though, he's latched onto the fact that we're worried about him not eating do he's using it as an excuse to dictate what he'll eat when which is not on because it's done with a horrible attitude.
The new things are an on/off fever and vommiting when coughing.

Shineyshoes10 Fri 01-Jan-16 12:02:33

That's crap. Hope they come up with a plan soon and you start to see an improvement. Is the last month or so a sudden deterioration or more gradual?

How's your DS coping? When he's well enough to be at home do they let you do home IVs. Hope you have lots of practical support around you, it's hard having other DC at home. Easier said than done I know but remember to look after yourself too.

Yep back on the ward while they all scratch their heads over what to do with him.
We've had 3 weeks IV anti biotics which lasted for a week before he went down hill again. sad

Shineyshoes10 Thu 31-Dec-15 00:19:09

Sorry things are difficult at the moment tits Are you in hospital? Hadn't seen this thread before now, only found it searching for something else. I know how lonely it can be so if you want to chat I'll listen.

Can I rejuvenate this as a support thread? It's all a bit hard here atm.

Tiredstressed Tue 21-Apr-15 20:14:12

Hi Trees. I have a one year old DD with CF. I can relate to your comment about reading threads on CF after diagnosis - I was desperate to read about it but at the same time was so scared of what I would find. Difficult days. Anyway, I am happy to chat. Hope things are going ok for you.

TreesDogsBooks Thu 05-Mar-15 19:54:50

As a regular reader of MN thought I would resurrect this thread in case there are any other cf parents who want to chat. Here's my daughters story so far emmakatecorr.blogspot.com
I know I read every single thread on here to do with cf in those early, dark days desperate for someone to talk to.

scoobydoo88 Sat 25-Jan-14 08:18:32

I'm 25yr with CF. I have two healthy boys aged 5yrs and 2yrs.

I'm free to chat x

morethanasong Mon 25-Nov-13 14:34:44

This thread never comes up in threads I'm on, for some reason.

NettleTea, I'm sorry that things are difficult at the moment. I hope that things are working out ok in the hospital.

Are you on Facebook? I'm a member of a couple of very supportive groups on there that are much more active than this thread!

NettleTea Sat 16-Nov-13 13:11:55

A year on and we are here, in Kings, after having a bronchoscopy and flush yesterday, with a PH probe down the nose (but she is refusing to eat or drink because it is 'agony') and having lost nearly a year of school from anxiety and illness where she has at many times refused point blank to do any meds or physio. We had an admission early October so am sad we are here again now. But despite the difficulties of juggling being away from home, and DS not being allowed on the ward ( have had to call in all the favours for people to look after him) I am glad we are up here, as she will see the psychologist several times during her stay and we might start to get somewhere with this brick wall we have come up against.
Feeling a mix of not positive and very positive depending how the wind blows. I have to leave her here on Sunday night as I need to get home and look after DS. We will both have to come up next week, and juggle again, as he can nly stay n the waiting room. Hopefully we can take her out at some point next weekend.

littletommy22 Sat 27-Apr-13 01:11:25

hi NettleTea .....really sorry but only just seen ur post, better late than never eh???
Thank you for sharing your story. It must be hard for you to step back but i suppose that she is going to need to start taking responsabilty at some point, still scary tho

NettleTea Fri 14-Dec-12 14:40:17

Hi another mum here with a cf child. DD is 12 and just started seconday school. her little brother does not have CF but recently has been diagnosed with asthma and was overjoyed to have an inhaler like his sister. Can I just say how great and how true I found MissLivvys post. We know CF will get in the way, and we try to just take it in our stride. Its infuriating at times, worrying at others, and a bloody pain in the arse quite a bit. DD is probably heading into diabetes too, so that will be more to deal with, but generally she is a normal little girl, interested in doing the same as her friends, and we let her partake as normally as she can. We have had an average of 1 admission a year since age 8, before that it was 3 years, before that none at all - she was diagnosed just before her 4th birthday, and has the most common mutation.
She rebels against her treatment, and I am doing the difficult thing now of stepping back and allowing her to take responsibiliy. She desperately doesnt want a port, so she knows if she is lax and ends up having more admissions then that will be on the cards. She is in charge of her own creon at school.

morethanasong Thu 01-Nov-12 10:00:38

Didn't mean to press post! Dh has had late work nights and so I've been more tired and stressed than usual, just dealing with bedtimes by myself, which might account for why I've felt especially bad the last few days. I also read some things on the Internet that maybe I shouldn't have ... Our specialist nurse said the future has never looked better for a baby born with cf, but then there are still tragic stories out there.
What's gene therapy - is it some kind of treatment? I'm staying away from google for now! It would be good to know if there are treatments on the horizon though.

morethanasong Thu 01-Nov-12 09:56:20

Baby is sleeping and older dc playing so I might manage a longer post! Littletommy, thankfully ds is healthy at the moment. If it hadn't been for the heel prick test, we would have no idea that anything is wrong at all. He's my third baby and we were just getting into the swing of things, with dh back at work etc. when we got this devastating news.
Twojumpingbeans, I think I've pm'd you, but please tell me if it hasn't worked. I've had a look at the cf trust website, but would it sound crazy if I said I haven't wanted to post there because it might make it all a bit too real? MN seems a bit safer because I posted here occasionally when my others were babies.
MissLivy, it's so good to hear about your dd! I think your advice about getting enough sleep etc is probably very good. Dh has had some late w

twojumpingbeans Thu 01-Nov-12 07:21:18

MissLivvy - what a brilliant message, how exciting to be involved in the gene therapy trials, please do keep us posted.

little tommy I've sent you a friend request on FB so I can add you to the group, I have found it to be really helpful. I think one of the cruelest aspects of this is that our children won't be able to be friends in RL. So, I'm all for as much on line support and friendship as we can get - it helps me and hopefully in time will help my lovely little DD.

Morethanasong - will look forward to hearing from you, hope you are bearing up. X

morethanasong Wed 31-Oct-12 19:19:18

Thanks everyone for your replies - for some reason they weren't coming up on threads I'm on so I've only just seen them. Twojumpingbeans, I will pm you when I'm not trying to breastfeed a wriggly baby!

littletommy22 Tue 30-Oct-12 19:50:18

tonight (tuesday) on BBC3 at 8pm, love on the transplant list

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