Mumsnet has not checked the qualifications of anyone posting here. If you have any medical concerns do consult your GP.

Cystic Fibrosis support thread

(18 Posts)
ElodieS Mon 19-Sep-16 13:39:30

I imagine there are a few of us on here with kids or family members who have CF, would anyone appreciate a casual support thread? I've had a search through and come up with a couple of zombie threads and some guest posts but not much current.

My DTs are 4 and both have CF.

www.mumsnet.com/Talk/guest_posts/2399530-Guest-post-My-baby-has-cystic-fibrosis-and-its-my-job-to-help-him-feel-normal?reverse=1

www.mumsnet.com/Talk/special_needs/655581-Experiences-of-CF-cystic-fibrosis-come-and-share-I-know?reverse=1

www.mumsnet.com/Talk/general_health/383581-calling-all-those-mums-of-dcs-with-cystic-fibrosis?reverse=1

www.mumsnet.com/Talk/guest_posts/2584158-Guest-post-We-treat-cystic-fibrosis-like-a-lodger-not-a-prison-guard?reverse=1

Tiredstressed Wed 21-Sep-16 19:56:13

Hi there. I'd find a support thread helpful. My DD has cf - she is 2 1/2. I also have a DS who doesn't have cf. He's 1. I go through stages when I feel that I can cope pretty well but then it creeps up on me. Unfortunately I am not feeling too positive at the moment but I hope that things will improve soon. On the bright side, she is well at the moment, although I am not looking forward to cold season.

ElodieS Mon 26-Sep-16 10:21:13

Hi Tired! It might just be to the two of us but it'd be good to keep in touch here.

Sorry to hear you're struggling with it all at the moment, it can be really hard, what's getting you down?

Glad to hear your DD is well at present, is she at nursery or playgroups etc? DTs have just started school so we're on tenterhooks with all the new bugs they're bringing home.

Tiredstressed Wed 28-Sep-16 21:42:37

Hi there.

Starting school must be hard. DD is at home at the moment but will be going to preschool next year. I already have the dread! She went to a childminder from ten months old until earlier this year and predictably got a stinking cold within her first week. I know it has to happen but I hate getting worried over every sniff.

I think I am struggling because I am tired - our DS is not a sleeper and so it has been a hard year. Plus heading into winter is always stressful now. I have contacted our team to try and see one of the psychologists. I saw someone for a while last year and it really helped so hopefully I just need a top up!

Are your DTs enjoying school?

chelseamommy Thu 13-Oct-16 18:57:08

Hi ElodieS

My son 8,5 months now was diagnosed at one month old from the heelprick test. I just started a new thread also looking for fellow moms with cf kids in London. www.mumsnet.com/Talk/general_health/2755259-moms-with-CF-cystic-fibrosis-child-London
My son has been really well until recently he caught pseudomonas and has just finished 3 weeks of cipro and on 3 month course of nebulisers which i find very hard. My mood also changes daily from positive to absolute doom but i try to keep myself together. How have your kids been so far? how was it starting nursery? did they catch infections from there? I am also very torn about the advice to give antibiotics for 3 years as they dont do that in the states. Anyone else have same fear of child becoming resistant?? Would be great to hear other parents if they feel like giving the 3 year course of flucox helped keep them more healthy??

Tiredstressed Sun 16-Oct-16 02:07:34

Hi Chelseamummy

My DD was on prophylactic antibiotics from the outset until earlier this year. I expect she'll go back onto them when she goes to school. She is well - a few coughs and colds as you'd expect - but nothing that couldn't be managed. I don't know the extent to which this is as a result of her antibiotics but I am happy to go with it. I understand the doses are high to stop them getting resistant - I am far from being an expert though.

My feelings about cf change quite frequently- sometimes I feel strong and other times want to crumple up in a ball. It took me a good 12 months (and help from the cf team psychologist) to get to a reasonable place. Have you spoken to anyone?

The nebuliser must be difficult. It is amazing what they get used to - we are moving to bubble pep at the moment and DD is quite accepting of this new game at the moment. I have probably jinxed it by writing this and she'll refuse to do anything tomorrow. We use tv to keep her still during physio - you've probably had this advice many times but it works for us.

I hope your son is well.

Tiredstressed

chelseamommy Sun 16-Oct-16 11:28:59

hey tiredstressed

Happy to hear your daughter is doing well. Thats what i try to focus on as well when hes well and take it day by day. Has she ever had pseudomonas?

I havent spoken to anyone yet im considering it now but i feel like even the cf team psychologist wont understand, thats why im here looking for other mums who know what this s**t really is..

I use babytv for nebulisers as well and he has got a lot better as the days go by. Has anyone needed iv antibiotics in hospital and had to wait weeks for treatment? Thats what i was told the situation at the Brompton Hospital is at the moment sad was wondering if its the same in Great Ormond Street? also wondering about the ability for parents to stay over night, is there a bed for moms?? or only a chair by the bed? Trying to prepare for the future hospital stays mentally.

Had to google bubble pep now i know what to expect in the future i hope by then my son will be used to masks and all sort of blowing machines....

chelseamommy Sun 16-Oct-16 11:41:18

Also are you taking the flu vaccine each year? Just been told to vaccinate the whole family

Tiredstressed Sun 16-Oct-16 11:47:47

Hi there

No, she has not had pseudomonas yet. I think it is only a matter of time - particularly as her favourite thing is jumping up and down in muddy puddles (thanks Peppa).

She hasn't been admitted yet but I have heard that there is frequently a waiting time before admitting for routine ivs. Sadly the NHS is really stretched. Once they have had one dose of a particular antibiotic, they may look at home ivs here, which should speed up the process.

I had to stay in hospital with my son - he doesn't have cf but caught a bug from his sister. There was a camp bed by his bed on the ward. I would have thought that it would be similar on the cf ward save that you would all be in individual rooms (which would be much more restful!).

I found that the cf psychologist was really good and very practical in terms of how to deal with it. Each to their own but it might be worth having a chat with them and seeing if you find it helpful.

Tired

chelseamommy Sun 16-Oct-16 12:09:16

Thats really great no pseudo or hospital stays!!! My son got the pseudomonas from his routine bronchoscopy @ The Brompton so pissed off about that!!! thank god his last cough swab was clear hope its stays that way we still have 2,5 months of nebs left.
Ill contact the psychologist on Monday thank you for the advice smile) Ill ask around about the cf ward as when we had the brochoscopy and stayed at high dependency unit at the Brompton Rose Ward all those moms had no beds and i literally felt so shit after seing that and thinking that will be my life very often....

Tiredstressed Wed 19-Oct-16 21:44:28

Hopefully admissions will be few and far between. It is a very daunting thought. That's terrible about the infection coming from the hospital. DD hasn't had a bronchoscopy yet - I hadn't appreciated that this was a risk from the procedure.

Shineyshoes10 Thu 20-Oct-16 09:33:00

Chelsea Speaking to others I think it depends on the area, even within states, as to whether prophylactic ABs are given (and for how long and the dose) in the US. Very similar to how practices differ in the UK.

HDU beds are generally different. I've been on a few HDU's and not one has allowed parents to sleep by the beds due to the increased care needs of the children. Whereas wards normally have a bed/chair for parents to sleep.

Was the positive pseudomonas culture from the BAL? Sometimes, especially in young children, bugs are grown from the BAL which cough swabs/sputum samples don't but it doesn't mean the bronchoscopy is the cause of it. Although there is always a risk of picking up an infection from the bronchoscopy itself usually if they want to one the benefits outweigh the risks.

chelseamommy Thu 20-Oct-16 13:56:46

Hi Shineyshoes10

My sons brochoscopy results were all clear he had no infections but started coughing right after the operation and it gradually got worse and in next clinic visit he tested positive for pseudomonas so i am strongly convinced he picked it up from there as i read that especially respitory tubes carry it and its very common in London hospitals. A nice fact the doctor ignored when i raised concerns about infections from the op. Of course anything is possible but i had a child that was very well and after having it done very unwell sad coincidence?? So my advice to other parents would be to trust your own instinct wether your child really needs a bronchoscopy..

Tiredstressed Thu 20-Oct-16 21:53:16

Hi Shineyshoes - how are you all doing?

Shineyshoes10 Fri 21-Oct-16 01:43:35

Sorry he picked it up from the bronchoscopy. Just thought I would mention it incase it was the case and no one had explained. Keep posting I know there are parents of DC who attend Brompton on here so hopefully they'll see and post.

Hi tired we're muddling along ok thanks. How are you? It's brilliant you have so far avoided admissions.

Tiredstressed Fri 21-Oct-16 18:45:37

We are all good, thanks. DD is off her antibiotics for the time being. DH is at home looking after her and DS so we have escaped some of the childcare bugs. Preschool starts next year, so she'll be back on it all then, no doubt.

Shineyshoes10 Tue 25-Oct-16 01:08:48

No antibiotics and no admissions, brilliant!

No doubt preschool will have different challenges for your DD and yourself (doesn't every new stage?), but as much as we would like to we can't keep them in a bubble. Quality of life has to be a consideration. IMO life has to be as normal as possible. Part of that is interaction with peers and age appropriate activities, despite the associated risks. The anxiety is mine to deal with.

Feel free to ignore my middle of the night ramblings blush.

Tiredstressed Thu 27-Oct-16 19:45:51

That was one of the things that I spoke about with the CP on the team - whilst it is tempting to keep them locked away, it doesn't do anyone any favours. It's difficult though. I want to control things whilst I can.

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now