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.

Peppeapig im glad your DD's review went well.

Jacks was in january when all the problems started! Hie review was fairly positive though, his brathing scan and x-ray hadn't changed since last year he has always had a patch section on his upper right lobe but they are not sure if it was infection (although no symptoms of infection then)or becuase he has Pig Bronchi which is a very rare lung make-up where he has an extra pipewhere his lungs brach into two. He had a Brinchoscopy last year and it showd no sign if inflamation or scarring so the dr's are stumped!
He is having another liver scan next week as his bood results show high for the liver function and he has a history of a fatty liver.

Hi
i have only been on mn recently as i was mega broody and was trawling baby sites.

I was looking for a cf thread quietly.( to scared to look search too deeply)

So thanks for bumping.

i have ds1 8yrs (wocf) and ds2 4yrs (wcf).

ds2 was diagnosed at 3 weeks through heel prick he keeps really well no i.v's above average weight and height, thriving all round really.

So as i said mega broody and was amazed to see Doris is expecting. Congratulaions and so pleased for you about cvs results.

Really relieved to have found it as i feel i have outgrown cftrust forum.

So i want another baby!
DH and i are having counselling at the moment really just a safe place to discuss ds2 and deal with the trauma after diagnoses etc. It has brought up alot of stuff for me. I didn't think my last pregnancy was my last pregnancy.

So thats me and where i am at.
Another cf Mum. Hi [waves]

Hi rain welcome to the CF thread!

my update.
my dd has just come out of hospital after a 48 hour stay. Luckly no iv antibiotics only oral ones. she is on the whole well. 1st in patient stay in 15m! But it was tough as i had to leave ds with friends so he could go to school.

how is everyone else's dc?

Jack is likely to be going in for 2 weeks of i.v's on Tuesday, He just can't shake this cough.

It will be on my bloomin birthday which is a bit of a downer tbh. But if he needs them, he needs them............

Just signed up to mn today, actually to ask advice on schools and thought I might be able to contribute positively to this cf discussion

I am a 37 year old woman with cf, a workaholic husband and a hyper 2 yr old. I am degree educated(it took me 5 yrs...) and had a great career until i gave up to be a full time mum. Hope it helps to hear this

CF is a horrible disease but in most cases you can live a good and fulfilling life. Its only as a mum that i've come to realise it must be alot harder to have a child with the disease than live with it yourself. Trust me on this!

If i can be of any help to anyone - ask away

PS In my clinic there is a 52 yr old!

Ilovepeppapig - I was going to post a question about CF & Dyspraxia on the CFT forum but then saw your post and thought I'd say hello

My DD1 has dyspaxia but not CF, and DD2 has CF and has has been given an initial diagnosis of " significant delay in expressive language and phonology" - so I am pretty sure that's heading towards a verbal dyspraxia diagnosis before she's much older. I didn't think that genetics could be so cruel to one child

What age is your DC?

hi bubble.

my ds (WOCF or anything else for that matter) is 9 and dd who has CF, epilepsy, speech and language delay, asthma, hypertensive joints,hypotonia, dyspraxia etc... she is 7.

I kind of know what you mean. First dd just had speech and language delay, then she was diagnosed with epilepsy then a year later she was diagnosed with CF and i kept thinking poor dd how could she have more things to cope with.

I am enjoying a girly weekend with DD. DS is off camping with cubs so we have "done lunch" and a trip to the park to see the farm and just about to make scones in a minute

Hi,
I'm new to MN. Nice to see a thread about CF. I have 2 sons, 1 WCF 1 WOCF. The 1 wocf has autistic tendencies and speech difficulties. I sometimes think I've got more than my fair share. Oh and my husband moved out 2 weeks ago - that's another thread! But you all sound so strong - I hope it's contagious. Are any of you worried about swine flu with CF? I have to stop myself from thinking 'he's going to die'.
MUST be more positive!

Hi Talisker
Yes, very worried, especially when people ask what would happen to DD if she caught swine flu? and I'm thinking "actually you probably don't want to know the answer to that"

That said, her consultant yesterday said you have to keep it in perspective - people get flu every year, this time the media is whipping up everyone into a frenzy, life goes on as normal blah, blah...

Does your DCwcf keep well?

Thanks for replying. Son WCF keeps well since having immunoglobulin - started Feb. He now has less IV's - used to have them every 3 months. But IL's don't seem to take it seriously. Just been to stay with MIL who has had a really bad cough/flu - she had just come back from a cruise; I had told her on the phone that if she had a temperature we definitely can't go. Got there to be told she did have a 'slight temperature' - aaaargh! She said if that was swine flu it wasn't too bad. I came away feeling I should have said -'BUT IT WOULD BE A LOT WORSE FOR SON'. Because of marital problems I feel i can't be as assertive as normal. But that's another story!

Hi all,

Sorry I started this then didn't come back, I thought it had dropped off.... have been busy being horribly pregnant, but now with the arrival of dd3 I'm starting to feel relatively normal and starting to settle back into real life.

Only picked up this thread as i was looking for JumpingJellyFish but you guys will understand just as well.....

Having said how things were settling down, we had a phone call on Thurs DD2 (wcf) had grown pseudo again, last growth over 18mths ago. Off we all go to have a chat and for the doc to listen to her chest no IV's for the mo I presummed they would want to but no... Anyway we did some work with our cf nurse at the hospital with the nebuliser (she had one as a baby but now she is 2(!)) got home first dose relatively ok, second this morning a nightmare had to resort to her mask, then this evening she took most of it ok via the mouthpiece but then tired and 2, decided no more so we had to 'fight' again. ended up putting her to bed still sniviling slightly even after loads of cuddles and hugs. Just don't know how on earth we're going to manage this newborn dd3, getting dd1 to pre school and any kind of life .

At the moment we're using dvd's which she choose as distraction whist she having it, (we were having problems with physio before this all started, and had just got that cracked). So any ideas to help anyone??? Oh and any snippets to make me feel less of an awful mother would be great too

Will keep an eye and bump

hope your LO's are all doing ok and having a good summer

x

Hi Doris-CONGRATULATIONS on dd3!!! Life is busy for you at the moment but I'm sure you'll settle into a routine soon enough. God luck with the physio and the nebs-She'll get used to them eventually!

Hi Doris and congratulations on DD3

Don't have any help at all - really hoping someone else will come up with something. DD2 is now 2 and started a nebulizer in January and it honestly took about 3 months of holding her down before she finally gave in and did it voluntarily. I think I cried even more than her, and felt absolutely horrible.
Now this week she's started resisting again, and has decided that physio is out as well- complete nightmare. And she's a bigger, stronger child than before, AND she is definately TWO!!
Someone on the CF forum suggested having TV on, but switching to the News if she doesn't comply, which works a bit ( until DD1 starts complaining that she was watching as well- aaagh! )
So which is worse - fighting & getting the nebulizer & physio done ending up exhausted & crying... or not getting it done properly and ending up feeling a bad neglectful mother, exhausted & crying? Yes, I need someone to tell me it gets better as well!

hi there.

congratulations Doris on dd3.

dont be so hard on yourself doris. its tough i know at the moment but you can do it!!!!

i use dvds for physio/ or while dd is on the neb. which is ok at the moment as dd loves her tv and i try and restict it so she is desperate to watch it !!!. and some times sweets as a bribe if TV doesn't work. dd's favourite sweet choice is mm's so she has a handful after phyiso or meds which ever she is refusing. Not ideal i know but it works for us. also my ds is older (9) so he accepts that the sweets/tv are to make dd feel a bit better about things.

what about a sticker chart with a small prize at the end of the week?

or a favourite activity after physio ? my dd likes play dough and i reserve that for a treat after physio some times.

or what about making up a treat box with comics, bubbles, beads, making stuff, stickers, etc and let her choose something if she is feeling down after physio or doing her meds?

Fortunately for me, dd is doing so well at the mo. she is going for a CT scan in london and if they are pleased with the results she may be discharged from the royal london with 3 monthly checks at our local hospital. however dd is usually well over the summer - but gets ill when school starts!!!

dd is on fluflox daily and an eflow nebuliser every day.

will check back more regularly.

Peppa xx

my dd is a bit older (nearly 8) so she can be bribed with money as well at the moment dd is getting 20p a day if she accepts her meds/physio and she has seen a £4.99 dog she wants so she is being very compliant

Hello all

Haven't been on here for ages but just thought I'd check and see more posts!

Doris really don't be too hard on yourself. I'm so sorry DD2 has grown pseudo again- hope the nebs do the trick. DD has had a neb pretty much continuously since 4 months old, but in spite of that still goes through periods of really fighting it. We use a mask all the time, as she doesn't seem to get the mouthpiece. She's so good at the moment she holds the mask happily! But I'm sure we'll have another phase of fighting it (& physio)- they are 2 after all!

I use DVDs all the time for physio and nebs- DD gets to choose though we do sometimes let poor DS choose. If DD does her neb/physio with no fighting/squiggling she gets a hobnob (so does DS!). Bribary and corruption eh! We sometimes have to count pats/vibes etc. to help her through the last few mins of physio and she's learning to take deep breaths and huff them out while doing vibes.
Some sessions though she just doesn't want to cooperate and it's tears all round
I find it really hard at the moment to get DD's physio done and us all ready in time for me to get to work for 9am 4 days a week (am working 26hrs a week at mo)- am scared stiff how we'll manage to get DS to school on time once the baby arrives (though won't obviously be working then, so will probably end up often doing physio after school drop-off). But will just have to "wing it" somehow....

Really hope you are getting on ok- am 25wks gone now unbelievably! Bit worried that baby is due in winter when all the flu etc. might be going around and DD might be needing a lot more physio/drugs etc. but am resigned too that we can't prepare for everything...

A big hello to everyone else!

Thank you sooooooo much ladies

Both DH and I have taken snippets of comfort from all of you.

We're using dvd's and at the mo mickey mouse is the current favourite (I go to bed with it going round my head). She is 'currently' being really good with physio we're still only doing percussion tho' (she does however do the most half hearted coughs I have ever heard, I think she can move gunk if she coughs properly and she does lie the taste )

We loved the idea of moentary bribery when she older

Time management and trying to do it on my own are my biggest worries, as dd3 usaully wants feeding just at the wrong times (but I keep telling myself it will get easier). JJF we normally slot physio in after the school run, but because it's such a hands on job dh has agreed to help me with it before he goes to work.... will see how it goes next week....

Dh is off this week and we're working together one holding and one gently stoping her shifting her legs into a postion where she can push off the chair!! (sounds dreadful when written but she is getting a bit better). Our CF nurse has suggested doing it when she is asleep but I just can't see it happening as she is such a light sleeper.

On top of that she on levofloxacin (instead of cipro which she doesn't tolerate. Last time we hid it in peas and she ate it without a backwas=rd glance this time we've tried sultanas (half tablet inserted, jam (crushed/ mixed) yougurt (crushed) jelly (half tab and crushed) and today crushed mixed with chocolate spread. We manage one day befpre we get a refusal ltough the chocolate spread this morning she came back for more so that may go for a couple of days we do make a distinction of calling it medicine so it does deter her completely from the food group (!) particularly as we're experiencing 2 on that front as well. Going to swap the dose over to the evening now to see if that helps her appetite.

Anyway off to bed now

Thanks again

x

Forgot to say JJF really glad to hear things are progressing well, we could worry ourselves silly about what might with the babbies and the DD's happen but I've come to the conclusion well sort it if it does so my(post) pregnacy brain can't cope with any more than that. (Dh on the other hand worries for the world) .

Hi all

can you believe it ! having said dd was well - well she's not now. Obviously having tempted fate !!!!

she is lying next to me coughing her guts up, I hope this is not going to be another hospital in patient stay. poor dd.

hope all your dc are keeping well,

Sorry to hear about your dd ilpp,

I hope that she improves quickly and avoids the admission (or if she does have to go in it's not too traumatic (for her or your family)).

Things have settled down a bit here we've had two 'neboolisers' (her pronunciation not mine!) in a row without too much resistance , pretty much since we discussed the fact the "the doctor said she HAD to have it.

(oh and chocolate spread is still doing the trick)

thanks doris

she seems a bit better today. I was getting worried. she slept for over 24 (with short 5 minute periods awake) with a high temp and she said her head hurt. No visable sign of her chest or breathing being effected. so i was thinking swine flu but today she looks a bit better and is managing more periods awake.

anyway she is out of bed watching tv next to me at the moment, so that a good sign

Hi thought I'd bump this again and see how you're all doing.

We didn't tolerate the levo for more than 5 days and so went back for 2 weeks of IV's (that was a Challenge!)

Since then as she still had a cough we've started on DNase as well which seems to get things moving!!!!

Anyway would lve to hear how your LO's (and the not so LO's as well ) are doing.