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Cystic Fibrosis...any threads??(55 Posts)
does anyone know if there's any active cystic fibrosis threads?
Sorry for the late response but i don't come on here very often. Also i'm sorry about your bad news. i found out about my son not long after he was born and it is very daunting especially as its an illness i knew almost nothing about. Is your son currently in hospital?
Hi there - I'm here. Believe me I totally understand how you feel. My little one has CF and is now 7 months old. If you want to talk then please PM me and we can swap contact details.
Have you looked at the CF trust website? Their forums are ace. Also if you are on Facebook there is an amazing group called My CF Family, they are wonderful. There is a sub group too for CF Parents who are completely brilliant and very supportive.
Please know that I understand exactly how you are feeling. It's like your world has been smashed to a million pieces, we are still rebuilding ours but we'll get there, things will never be the same again, just different.
Sending you love - if you want to talk or email then PM me and I'm here for you, hugs.
I've just had a look for those facebook groups twojumpingbeans but can't find the, don't suppose you have a link for them? as i would like to join x
Hi more than, our DD was diagnosed at 3 years old, she's 17 now and has just applied to Oxbridge. I know those feelings of desperation, when the life you thought you were going to have, has gone. I'm not suggesting it will ever be 'right' and of course I wish my beautiful daughter did not have to suffer as she does, but over the years we have experienced so much love and kindness from so many. DD has missed about 2 years of school yet has achieved so much. But what has made the difference is how one's family deals with the cards one has been dealt. I always remember her consultant on the day of diagnosis, saying CF will dominate your life but don't let it ruin it. This is the attitude we have adopted, we have 2 sons 18 and 15 wocf, and we enjoy our family and all the good things in our life. I believe the biggest chance in life is the parents you have, their approach is crucial. There will be very tough times ahead, DD has had periods of terrible illness, but she has pulled through. Just because things may look very bleak at times, does not mean that's how things will pan out. My advice would be, you're perfectly entitled to feel sad about the cruel blow you have been dealt, but try to focus (in time) on all the good things in your life. Always get enough sleep - tiredness can bring the sad feelings rushing back (also you need to be ready to leap into action should illness strike). And try to live in the present, and not think too much about 'what ifs'. The future is brighter than ever for CF sufferers, in fact tomorrow DD goes for first gene therapy trial treatment! I wish you and your family a long, happy and healthy life xxxxx
thats very good advice MissLivvy xx
tonight (tuesday) on BBC3 at 8pm, love on the transplant list
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!
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
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
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.
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.
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
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.
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!
I'm 25yr with CF. I have two healthy boys aged 5yrs and 2yrs.
I'm free to chat x
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.
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.
Can I rejuvenate this as a support thread? It's all a bit hard here atm.
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.
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.
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.
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.
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?
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.
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.
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