Experiences of CF (cystic fibrosis) - come and share I know there are a few of you out there!!

[DorisIsAPinkDragon]

Have finally been brave and started a thread that I wanted to start a long time ago so anyone with a dc with CF please feel free to join in and share.

FWIW I have 2 dd, dd2 aged 16mths has CF, she was diagnosed soon after birth with meuconium ileus (sp?) and has double DF508.

In the past year she's been admitted quite afew times for both respiratory and abdominal problems, locally and at the surgical centre 200miles away (which is a bugger for dd1). She's grown pseudo in the past and "did" 7 months of nebs.

Oh and I managed to do home IV's in a tent in scotland as part of our holiday

Anyway If there is anyone out there I would love to chat.

Hi. I have asked my dh to come on and talk to you but he is a little nervous and unsure what to say. He and his ex wife had 4 children together, 2 of which HAD CF. If you would like to chat, please reply to this post and he will reply back. Hope all is ok with your dd at the moment. x

that should read HAVE 4 children together, 2 of which HAD cf. sorry! X

Hi Doris i am impressed that you started the CF thread.

I have 2dc. ds is 9 and not CF. DD is 6 and Cf.
We had a late diagnosis only a year ago. Before that she has several hospital stays including 2 for pnuemonia before her chest x ray fell on the wrong doctors desk and i had a phone call at home asking me to bring her in for tests. The sweat test confirmed it and we have a local hospital and are seen at the Royal London. Fortunately she does not have the digestion problems your dd has.
she has been well for the last year. thanks to the perminent flufloxicillian, pulmonary dnase distributed through the eflow. Usually she is in hospital for her birthday in december and misses the lovely things at school and has a rotten christmas. But this year (fingers crossed) i am hopeful that things will be different. She is going to be an angel in her school play on 11th Dec and she is so excited. she had to miss it last year.
I dont know about you but i find it hard to keep it all going. I work full time and am a single parent, what with the physio and medications not to mention poor Ds who does n't seem to get much of me.
Have you filled out the DLA form? my cystic fibrosis nurse keeps telling me to do it but i have n't yet.
have n't really tried out the CF boards are they good. Only found this forum about 1 month ago. Don't like to read too much about it as it scares me half to death. Thought i had lost her at 11months with the first case of pneumonia and then again last year when she had pneumonia again. Both times was told to prepare for the worst but luckily she is a fighter.

Sorry have told my story. like you would like to hear other experiences. i do not know any one else with CF and suppose still am adjusting to it.

Prior to diagnosis with CF. DD had a late diagnosis with epilepsy about 2 years ago. She also has speech and language issues, hypertensive joints and hypotonia (poor muscle tone) dyspraxia and was a selective mute at school for 18 months!

hi,Doris and Julier.
My children were diagnosed when only babies. Ds2 at 3 months old and dd1 at 1 day. dd had meuconium ileus and had 20cm of her small intestine removed, bloodless surgery, and made an excellent recovery. She was under Mr Bianchi at St Mary's, Manchester. Dd and ds both lived their lives to the fullest, both used to horseride, and ds also surfed. Both had pseudomonas and they both spent years in and out of hosp for nebs and IV's. We had to do their IV's at home aswell as the physio, nebs, overnight feeds etc (ng tube) both kids could pass their own ng tubes. We also spent many nights in a tent doing IV's and feeds so I know how you feel doris!! Neither of my kids lost their sense of humour and they were always happy and accepting of their condition, even when they were ill. As you have probably inderstood, both of my dc passed away, dd,6yrs in 2003 and ds at nearly 14yrs in 2005, the month I married my new wife. I do not want you to be upset about what I have written but I want you to know that there are people around who know what you are both dealing with along with your families and other children. Please feel free to ask any qustions and I will try my best to answer them. All the best for the future, stay strong and be happy and enjoy your children.
Chris

Oh I hope you havent both been put off continuing this thread. Plaese dont be, my dh would like to hear from you again and he hopes what he said hasnt upset you too much.

Hi there monster. just read your message and wanted to say that it did make me cry but also has helped. my dd is the same age as your dd when she died I need to keep remembering to treasure every single day and make sure like your dd she lives her life to the full. ironically she loves horse riding too. will post again soon

Thank you both for your lovely posts and MMM dh I did get teary but thankyou for sharing such personal details, I'm trying to find words to express how I feel but I can't it al seems too trite, but thanks doesn't really seems enough.

dd2 definitely lives life to the full, and although only 16mths is into everything, Julier it is difficult trying to do everything and balance time with dd1 too, although we are now going to add to the mix and the chaos as I'm pregnant again with dc3, we did think long and hard and have only just started telling people as my cvs results came back this week that although dc3 is a carrier s/he will not have CF!!!

As for DLA do it, we were on lowest rate initally but on appeal were raised to mid rate which means that as I work less than 16 hours per week I claim carers allowance too ( I'm a sahm so don't work at all) We had help on the appeal with support from our team, health visitor ( maybe school nurse for you) and the cftrust who write in support if you send a basic form off to them I think it's on their website.

I did go to the trusts website when dd was 1st diagnosed but it is sometimes distressing reading what others are going through, but there are uplifting stores too. Dh has some free time at work occasionally and the trust pages are one of the few unblocked sites so he regularly updates me! He does have his uses... he also helps with the physio etc particularly atm as I am not good being pregnant!

Lydie (dd2) is back on augementin atm in addition to her fluclox as she fighting something as is dd1 (so we have a house full of snotty tissues) but hopefully her cough swabs have grown any nasties....

I've got my fingers crossed for this christmas as lst christmas we only escaped our 2 weeks jaunt to Bristol on christmas eve, by which time dd1 had gone to Scotland with her GP's

Still hope (all) your dc's stay well

love DorisX

Hello all!

Thank you Doris for starting this Weirdly/ironically Doris & I were on the same antenatal thread on here when due our second-borns, both who were then diagnosed as babies- and Doris it has been great to "know" someone else going through all this...

I have 2 DCs, DS- 3.6yrs- without CF, and DD- 17 months- with CF. She was diagnosed via the heel prick test - we had to have 2 as she was born early which can sometimes affect the result- so it was when she was a bit over 7 weeks old that we received the call. Up until then she had been pretty well but a few things were concerning us- lots of very loose nappies (often green) and she needed help with breathing in her first week which they hadn't expected (she was born at 36 weeks after I developed PE). But she was on the 25th weight centile, gaining slowly- but feeding all the time to keep there it seemed.... She has G551D and 621+1 G>T mutations, and is pancreatic insufficient.

We have been incredibly lucky that she has not been admitted since her first "learning the ropes" hospital stay, for which I'm incredibly thankful. Our team (in Belfast) are wonderful, seem to pick up on things very quickly, DD has some resp probs so over winter needs DNAse nebs & ventolin nebs, and we've just started saline, but touch wood hasn't grown anything yet.

Julier & monstermansmum (Chris) thank you for sharing your experiences. Chris thank you for being so brave to post your children's story- it is so sad to read but I am sure they lived a full and happy life. I think all we can do is keep focusing on the present and not look too far into the future (though am secretly hopeful about gene therapy!). Julier- definitely apply for DLA- our clinic has a social worker who basically did our forms for us- and we got the middle rate which is what apparently most children with CF should be entitled to (at least).

It's great to chat to you all.
Sending lots of stay well over winter vibes! xx

PS. Just wanted to ask anyone if the "sadness" (for want of a better word) ever goes after having a child diagnosed with CF? I try to bury this feeling, as know it's not helpful at all to anything, but some days (especially if they are unwell, or fighting the physio/nebs etc.) I feel it so acutely (which annoys me in a way as know it's stupid to feel that way).

Congratulations Doris.
I have been thinking of you.
Loads of people will benefit from you starting this thread, so well done.
I'll clear off now as I feel like i'm reading your diary.

Congratulations Doris!! You must be so pleased. (and brave!)

Jellyfish, dh says that for him the feeling didnt go away, he (they) just learned to live with it and accept that there will be times when it seems more real than others, especially when they are ill. There will be times when you 'forget' that they are ill and there will also be times when you are sure they wont make it but then they show everyone what fighters they are and they get better as dd1 did after op at 1 day old and dd1 and ds2 did after several emergency hospital visits with pneumonia etc.

As a mum of an SN child (sld, epilepsy etc) I know that there are times when he is ill or I am feeling down and I think about the future constantly and I feel desperately sad. However hard it is for us as parents of children with any kind of SN or life-limiting illnesses I think the most important thing is to get our priorities right-yes we have our daily lives, jobs, bills, relationships etc, but at the end of the day making our children happy and making memories to treasure in the future, whatever it holds, has to be more important, dont you think?

Thanks everyone, it is now slowly sinking in just have a few more difficult months to get through, then we can get back to some kind of normality!

Oh and DBD I never get to see you now you're off working so probably the only way we catch up- reading each others posts

Oh had a cough swab back friday and was clear pof any nasties, but not totally reaasured asit wasn't a great sample, Lydie's become very ( understatement here) averse to them I'm trying to teach her to cough on command so I don't have to ram he thing down the back of her throat, which she is great at doing but only when I've taken the swab away!!!!

Still another day another dollar or somesuch nonsense...

Hi Fio. Sorry to hear about your sister, 21 is a good age. Treatment has got so much better, and the possibility of gene therapy is giving people a lot of hope.

My son has Angelman Syndrome-does your dd have a dx? I too took it for granted that my child would be 'perfect' in the broader sense, I even said once that I was so lucky that there was nothing 'wrong' with him. He's even more perfect now to me, and despite his challenges, there is nothing 'wrong' with him!!! Before I got pregnant I got checked out to see if I was a CF carrier but I was ok. Not sure if the babies are carriers, I'll have to ask if I can get them checked!?

Just a wee message to wish you all a very happy Christmas (and bump up the thread)!

FioFio- so sorry to hear about your sister I am sure she was an inspiration to many.

Thankfully in spite of two more nasty colds DD seems to be holding her own with a bit of help from DNAse and ventolin, so now we can look forward to a healthy christmas hopefully!

Hope the morning sickness is improving finally Doris- hugs to you and Lydie (and DD1 too!) xx

HI, i have just found this thread. I have been wanting to find or start one for a while to gather a support group for CF parents. I use the CFtrust forum but it would be nice to have another source.

My DS1 was diagnosed with CF at 2 1/2 after alot of problems since birth. DS2 is fine not even a carrier.

DS isn't doing to badly, he is currently growing Pseudimonious (sp?) after the bloody doctors taking him off nearly all his meds but it is being treated now.

Dh said "flippin brain dead drs!!" Glad to hear your ds is being treated now. How is he doing? We havent had the babies checked for being carriers-we were told we couldnt do it-they have to make the decision themselves!!They are 3yrs and 2yrs at the moment.

How are everybody elses dc's doing now? All ok I hope. xx

Just recieved the bad news...... Jack is most likely going to be hospital for another 2 weeks of I.V's if this last week of Cipro doesn't work.

I ta just so frustrating if they hadn't stopped his routine 3 monthly i.v's at his annual review in Jan then he would have just finished a course this week so it wouldn't be a problem.

He isn't getting any better he is coughing up so much after physio its horrendous. I have to take a cough swab up to the hospitalthis afternoon but i know it will still be growing pseudo.

Its a pain becuase we ususally do all his i.v's at home but since he is growing we wont be able to do them here and he will hvae to go in to the ward for at least a week, its such a pita becuase i have ds2 to be looking after as well. ARGH!!!!

Just to add something a bit inspiring,.. my 16 year old (cf) has recently moved from paediatrics to the adult clinic. When we were shown around the adult unit the consultant said "Now I'm going to show you the ward.." (private rooms.. internet and Playstations in each! DS was v impressed!)"... but I hardly think you're going to need to know where everything is.. the way you're going you won't be coming here...."

I actually stopped short in my tracks and said "Isn't that a little optimistic...." and she said that no, she didn't feel that it was "too optimistic".

It's the best thing I've ever heard to be honest.. I am going to guardedly clutch that optimimism to me.. positive thinking CAN make a difference; and this was a CF consultant after all.

(He has 2 x DF508 and pseudomonas since he was 11, diagnosed at 5 weeks with failure to thrive).

Keep the faith! There has never been a "better" time to have CF...

Charlee, excuse the above ill timed/placed message. I was responding to the OP. I hope Jack is better soon

Jack is Double DF508 to its the most common so hopefully the most researched!? (Charlee clings to hope!)

I did the cough swab and took it in with the nice brown gunk on the end of it that he coughed up, (nice) but he has really bad diorreah(sp?) (tmi) since he has been on his Cipro not sure why since last time he had it for months and was fine.

IME the most colourful gunk usually contains least in the way of bacetrial infection though, oddly

Hi charlee sorry to hear about Jack. I know how frustrating it can be especially with another child to think of. Which hospital are you at?
Luckily for us DD has just had her review at the Royal London and she is not growing anything and remains in good health. As her CF appears to be stabilised for once i am going to try and focus on her other issues such as her dsypraxia and speech and language problems!

We use our local hospital which is St Richards in Chichester but we have a shared care system with Royal Brompton and Harefield, i have had an awful lot of problems with the Brompton side of things, i know they are said to be the best when it comes to cf care but they always seem to make things so complicated for us!

Jack is very quiet today he has gone to school on his request but he is deffinatley out of sorts. Sayin that though he was playing with my niece the other day who now has chicken pox so maybe he is coming down with that to? His voice has gone as well but that is an on/off thing he gets with the Dnase.