# phonecall to say cystic fibrosis



## mum2be257

Had the dreaded phonecall this afternoon with results from blood tests and my daughter has been tested positive for cystic fibrosis, have not stopped crying since! stupidly looked it up on the internet and read all t he horror stories. have an app tomorrow with the consultant. Am so scared!!! no one on either side of our families has had this or is known to be a carrier!


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## Ilovehim89

so sorry to hear this. My thoughts and prayers are with you


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## maryp0ppins

This caught my eye as I was scrolling down the bnb main page.
My youngest sister (now 15) has CF, it is a very terrible disease but MANY MANY MANY people live long lives these days.
I will be keeping you in my prayers.
Nobody apart from my sister has the disease, myself, brother and other sister do not even carry the gene.
My advice to you is to keep your child very active from a young age if possible, this is what my parent's did with my sister and as a result she is in great health.


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## maryp0ppins

I just wanted to add that a cure for cystic fibrosis is just on the horizon, it will come in your daughter's lifetime I am sure of it.xx


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## angelic000

Sorry hun I am bnot on here much and have just seen your post I went through exactly the same thing in Feb this year I will message you x


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## RebeccaG

Oh hun - I don't know much about the illness but am thinking of you through this difficult time. xxx :hugs::hugs::hugs:


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## Midnight_Fairy

Oh hun xxxx:flower:


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## xLisax

Just seen this :hugs:

Firstly have more of these :hugs: :hugs:

It is such a shock when you are told that someone you love so closely has CF..I remember the day so clearly. I was exactly the same as you..googled and panicked! 

I just wanted to post a few pictures of my little man...he is 3 years old with CF..you'd never tell, we have been vigilant with bugs and medication from day one and *touch wood* his CF team are over the moon with him...he has never had a chest infection/been hospitalised etc (apart from birth, but thats a whole other story!) Honestly, it all _sounds_ bad but I can, with 100% honesty say that I never thought I'd feel this way now..its a way of life and Max does everything that every other child does..my 3 month old has been iller than him with coughs/colds so far! :haha:

https://i707.photobucket.com/albums/ww75/Maxs_Mummy/787.jpg
https://i707.photobucket.com/albums/ww75/Maxs_Mummy/DSC04677.jpg
https://i707.photobucket.com/albums/ww75/Maxs_Mummy/DSC04400.jpg

If you EVER need to talk, please PM me :hugs:


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## xLisax

& Ive just seen you're in Cornwall..me too!! :flower: Whereabouts are you!? xx


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## Midnight_Fairy

what a gorgeous lil man x


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## xLisax

Thank you so much hun :flower: x


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## mum2be257

Thank you for your post, your son is gorgeous! Was he diagnosed via the heel prick test? We are doing ok at the moment just started new antibiotics as she has pseudo so now getting our heads around that! We are near redruth, where are you? X


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## mum2be257

Ah just seen your in porthleven, not too far at all! X


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## babyerin

Wow how gorgeous is Max!!

Mum2be257 i'm glad you have support on here from xLisax. Years ago the prognosis was poor for CF (im talking decades ago) but the treatment for this has come along in leaps and bounds, and often the web is full of outdated horror stories.

Although there may be tough times ahead please be assured that the prognosis for your daughter is very good, and she will be a lot more fortunate than those with the same diagnosis twenty/thirty years ago. Best wishes to you both :hugs:


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## xLisax

Thank you babyerin :D 

Mum2be..wow we're not far at all..small world ;) So are you covered by the CF Team in Treliske? 

Max was eventually diagnosed by the heel prick but it was a bowel blockage at birth that got them thinking he had CF..he had surgery at 2 days and was in SCBU for 4 weeks..I'll link my birth story for you :) 

https://www.babyandbump.com/birth-s...mber-but-only-just-home-photos-now-added.html

All a bit traumatic but you'd never know now :thumbup:

How are you getting on with giving Sophie creon, vits, meds? I found that all sooo daunting in the beginning...but now Max takes it all himself, I just get it all ready in syringes/on a spoon etc! :haha:

xx


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## mum2be257

Thank you for all your support!! yes we are at Treliske, they are great aren't they! Meds are all going well, she takes them all so easily! Just getting the hang of the nebuliser now due to the pseudo, that was scary! I think the hardest things is trying to work out what is newborn baby stuff and what is Cf related! I am so paraniod, like all the little noises x


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## xLisax

They are so lovely over there yes! :) We had Maxs annual review on Monday and luckily everything is A-Ok! :thumbup:

You sound so much like I did at the start..I could write just what you have..I had just that problem..and I'm still awful now when Max has a sniffle..I get so worried that its going to be awful and he'll end up in hospital because he has CF...he never does!! :)

I'm so glad shes taking meds well! Thats one less battle hey! :thumbup:

Have they introduced you to physio yet? How old is little Sophie? :D 

x


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## mum2be257

She is 11 weeks tomorrow. yes started physio straight away, twice a day. If you don't mind me asking...how has it affected max as he is older? x


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## xLisax

I can honestly say not at all hun..and I 100% mean that! The only thing we have to do is go to clinic every 8 weeks and he can't go in my dads hot tub! Thats all that we've come across so far! :) Hes starting pre-school in January, he does everything that a normal 3 year old does! 

I think when its caught so young it can be so well managed and stop it from turning into something nasty! Max has only ever grown bugs that normal children get on his cough swabs and hasnt been hospitalised since he was born and once when he was a few months old..he had bronchilitis! :) 

It really will become such a way of life hun and you'll think about it..but not with sadness..its just part of Sophie :) & she will grow up to be a lovely little girl with so many opportunities in front of her..just like every other baby! :hugs:

Ask as many questions as you want hun..about anything! I dont mind! We also went through CVS with Evie..to see if she had CF before she was born..luckily she isnt even a carrier of the gene! :D

xx


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## mum2be257

Thank you, does he take meds well? What does he understand/know about it? Does he willingly do physio? Its such a whirlwind at the moment! Its great to have someone to ask though as much as the doctors know its different actually going through it! X


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## xLisax

I feel exactly the same... as lovely as the Drs are, they cant help but be 'medical' with it..especially Dr Prendeville sometimes, she was AWFUL for it a couple of years ago! Then they had a few complaints so she lightened up! :) To me, Max is someone who has CF..not a CF patient called Max iykwim..CF is never the main focus on Max.,.its just something thats part of him that we deal with :)

Max is on vitamin E suspension and Abidec once daily, creon with all meals etc :thumbup: He takes them all fine :) I just get the vitamins in the syringe and he takes them himself..we're just starting to teach him to swallow tablet creon rather than the granules..how have they told you to give that to Sophie..with fruitapura? I found that the simplest way! :flow:

He has a course of anti-biotics if he gets a cold etc, just to stop secondary infection :thumbup: & Max has never had one **touchwood**...I do his cough swabs at home so as soon as theres a sign of a sniffle I send one in! Catch it quick :) 

I'm presuming Sophie is on fluclox daily atm? I believe every LO with CF has that until they are 2 years old..thats when Max stopped his daily :D 

Max knows that he has to have creon..and will often tell me that he needs it before he starts eating...we havent told him anything about CF yet...I dont know when that will come, and tbh its the one thing Im dreading! We think we'll tell him as much as he asks..in little doses as and when hes ready! 

With physio atm its more physio play..he has a trampoline and we do blowing games, elephant breaths, mouse breaths...you'll get used to all of these as Sophie becomes a toddler ;) Because keeping Max still for percussion atm is impossible :haha: When he was a baby it used to make him fall asleep! :D

It is all so much to take in at first, and google doesnt help..I've learnt that! Stay away from google :haha: If you do want a good website, www.cftrust.org.uk is good..there is a forum section and they are all lovely! :)

xx


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## CityGirlEire

One of my best friends had it, and went on to get married and leave two wonderful, HEALTHY children as a legacy!


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## mum2be257

sorry for long reply! we are on that forum already, have found it very useful and its all very positive! we have also found a couple of other local families recently diagnosed through it. 
Medicine- sophie has creon with every feed, fluclox 4 times a day, vitamin E and dalivit. Also colomycin and another one that I have forgotten the name of for her pseudo. Sophie does take her creon with apple puree that i make up and freeze, it works great! she is very good at taking everything! She loves the physio on her back but does fuss sometimes on her side and front, but I just carry on and she soon gives in! it is very reassuring to people who are going through the same thing x


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## babyerin

I'm glad Sophie's doing well, she's beautiful :hugs:


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## Dragonfly

My son Alex carries the gene.


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## xLisax

Ah I'm so glad that everythings going so well! :flower: The forum is so positive isn't it...which is what it should be these days! Everyone thinks of CF during the past..it was awful back then, but medical advances mean early diagnosis and a positive outlook..our little people are proof of that :hugs:

Plus, gene therapy is right there...I am sure there will be a cure in our babies lifetimes :flow:

x


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## mum2be257

its all looking very promising! Is there an update yet? Last i heard it was agreed in principal. X


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## xLisax

Thats all I've heard so far...keeping an eye out for anything more..very promising hey! :) x


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## Tinkerbell3

I'm sorry to hear Sophie's test came back positive but please, please do not think it's all such bad news for her future and try not to google too much because most of the time you'll come across bad things and believe me it's not a good thing to read it all.

When I was 9 months old I was diagnosed with CF, my mum had never even heard of it and didn't have a clue what it was. The prognosis at the time wasn't great, infact they told my mum she'd be lucky to see me reach 4 :growlmad: well that was back in 1984 and I'm still here and coming upto 28 in January and let me assure you I'm not near to go anywhere.

Infact in the words of my Dr, specialist nurse etc I'm doing amazing. I still have a near normal lung function at around 88%, IV's only 1-2 times a year and I haven't been in hospital for over 10 years and the last time I was in was only to have a portacath fitted. I'm not sure how much is explained to you when the child is such a young age, whats treatments they have to do etc so if I say anything to you that might worry you because you didn't know about it I do apologise.

My CF is kepy under pretty great control, I do grow Psuedo and have done since around the age of 14 but it hasn't caused me too many problems. I was diagnosed with CF related diabetes when I was 16 but that is also completely under control.

As you may have guessed from me even being on this website I'm even TTC right now, this isn't going great as we've been trying for a year with no luck but I was warned CF can cause ferility issues but others (mostly girls) have no trouble falling pregnant at all. When I told my team I wanted a baby they were nothing but supportive, I wasn't warned it wasn't a good idea and they were happy for me to go ahead with my plans.

Of course there is a 'dark' side to CF, but it's certainly not a bad outlook like it used to be and life doesn't have to be miserable, living life in hospital, and feeling like CF is controlling you.

I can't even imagine what it must be like for a parent to be told their child has something like CF I can only help from the view of having it, but if there are any questions you have or ever just want to talk about what its like living with it please feel free :hugs: xx

BTW: xLisax - Max is such a gorgeous little boy, hope he continues to keep so well x


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## xLisax

:hugs: Your post made reduced me to tears..happy ones though...thank you SO much for sharing! Its great to have a different outlook on CF! 

Good Luck with TTC, lots of :dust: coming your way! :hugs:

xx


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## Tinkerbell3

xLisax said:


> :hugs: Your post made reduced me to tears..happy ones though...thank you SO much for sharing! Its great to have a different outlook on CF!
> 
> Good Luck with TTC, lots of :dust: coming your way! :hugs:
> 
> xx

Aw I'm sorry you had some tears but glad they were happy ones :hugs:

I think it's so important for parents (and the child) to hear positive stories more than the bad ones, thats it not all doom & gloom and you can look to the future with excitement not fear.
Personally I hate reading all the 'bad' stuff and try to avoid it as much as possible, it can just cause to much fear and heart ache and unfortunately you mostly heard bad stuff and not that there are grown up people with CF who are still managing to keep well like they were when they were children.

My clinic appointment before last my lung function was at 92%, pretty great or someone coming upto 28 I think :happydance: I still only have to take Creon, Vitamin A&D, Vitamin E, Insulin, 2 Inhalers and Dnase nebulisers daily so not a huge list of medication and I've been very naughty with physio over the years. Does Max do lung function yet? I have no idea what age they start this at, its a very long time ago for me (feeling old) haha :blush: he doesn't have routine IV's does he? I hate how some clinics do this now for children.

I noticed a few posts back you don't know what age is ideal to explain about CF or even what to say, honestly I never even remember having that chat. I just seemed to gather what having CF meant from hospital appointments etc and I never remember needing to ask about anything as such, I just remember 'knowing' and most people with CF will say the same thing.

Thank you for the :dust: me and my fiance actually just had our first appointment at the assisted conception unit this past Wednesday so hopefully now we'll start to get answers as to why no BFP and fingerscrossed the treatment we need to have our little bundle of joy xx


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## mum2be257

wow thank you so much for everyones support! The positive stories are very reassuring! I was only thinking yesterday how already after 9 weeks its completely 'normal' now, i cant imagine not needing to meds and physio as we just do it routinely now! I really hope all goes well for you, keep us updated! I do have a couple of questions if you dont mind .... We bought sophie these octopus bath toys that squirt, i asked on the cf site and everyone was really against them, surely as long as we soak them in milton after each use it would be ok? What about her bath sponge, grip mat and fabric bath mat that hangs over the bath? Are these all dangerous! X


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## Tinkerbell3

I'm so glad after just 9 weeks you are starting to find it all 'normal life' now and meds etc just part of daily life and routine, this will be great for your daughter as she starts to get older and becomes independent with doing it all for herself. My mum never made me feel like my CF was a pain, was something to be angry and upset about just that it was part of me and despite it I go through my day as it it's just normal.
You sound like you really are doing great and keeping positive, so wonderful :hugs:

I don't see why the bath toys will be a problem, one thing I've found (please any CF mums here I don't mean any offense) but on the CF boards some of the mums can be a bit OTT with keeping there child away from the slightest little thing that even has the smallest chance to grow infection or something.
My mum never did this, yes she was sensible but she wanted me to grow up trying to go through life as normal as possible not hating life or resenting the CF because it keeps you from leading a 'normal' life and in my opinion you'll just have a negative outlook towards everything.
I can imagine it's really hard at first trying to figure out whats ok, scared everything will cause her to catch infection but just like any child if they are kept away from every single germ it's not always a good thing.
After a while you'll 'just know' whats ok, what you feel comfortable with and you'll know what affects you gorgeous princess more than anyone and use your own intuition of what you feel is ok.

Some things I can remember some parents saying they avoid with their children are public swimming pools, steam rooms (now I know that one is not always clever), hot tubs, flying (I've seen people say they wont allow their child to fly because of germs) well for years I have done/used all of those and will continue to do so.

Let Sophie have her bath toys, her sponge, bath mats etc they are fine :)

Keep up the amazing, positive attitude you seem to have (I can imagine it must be hard at times, even now I'm nearly 28 even though she doesn't say anything I know my mum still has down days about it) and Sophie will grow into a wonderful, positive child who doesn't let her CF bother her one bit.

Anymore questions I'm always here i you want to ask x


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## mum2be257

You certainly have a way with words to make people teary! Thank you so much! I'm sure i will be calling on you plenty of times in the future! Keep us posted about ttc, i wish you all the best xxx


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## GypsyDancer

Hey i know this post is a little old but ive only just come across it :) my little boy also has cf..:hugs:
I can see from your last few posts that youve a much more positive attitude now which is good! I was going to say you wont believe how everything can turn around so quickly..I remember those early days feeling so down and like you i researched horrible stories ect..a year on..i couldnt be happier..my little boy is thriving, happy, very cheeky! and has had very minimal problems..a few runny noses ect..! Anyone that i end up telling abougt his cf (which isnt many besided freinds and family as i never feel the need to mention it) always seem shocked as you really couldnt tell him any different to any other baby his age..and he isnt any different :flower:
The prospects for gene therapy for cf are looking really promising right now aswell..and as my lo's cf nurse always says..the life expectations and stories you hear ect..alot of them are based on people who were born 20-30 years ago..so much has changed now..
I never thought when i found out about my little boy that id ever have anymore children buttt im now 5 weeks pregnant wiht baby number 2..

Oh like you i also worried about the bath toys :blush: I banned them for a little while until mil kept buying him toys which let water in..she just makes sure she dries them out thoroughly..Im much more relaxed about him having bath toys now..infact i hadnt considered his bath sponge as its normally dried out by the time i use it again..i do remember i asked his cf nurse about bath toys once though and she just said to put them in a netted bag that grips to the wall for toys and let the water drain from them..so i wouldnt worry too much :hugs:

Im rambling now, but just wanted to give you :hugs: 
Hope you and your LO are both well x

Also with regards to above poster^ about some parents avoiding swimming pools..Ive taken lo swimming a few times..however his nurse said just not to put him in the showers..to shower him at home instead..she said the showers arent very clean :haha:


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## xLisax

Tinkerbell, you are such a breath of fresh air! Honestly, its so nice to hear about how well you are doing..and I totally agree about the CF forum mums (some of them ;) ) I go on there and feel like I can't let Max do anything, but I let Max do anything a normal child does..I'm obviously just careful with it..he has bath toys etc..on the forum they were talking about changing your shower head every month :wacko: I've never changed it! We've also just bought Max a guinea pig who he has named Plop :haha: We just make sure he doesnt go anywhere near the hutch and that Plops feet are hay/straw free! :D Max adores him :cloud9:

I think if you go OTT with it, it starts ruling your life..I dont want that for Max :) 

And in reply to your questions Tinkerbell, no Max doesnt have routine IVs :thumbup: He hasnt had an IV yet..so that will be new for us if/when it happens! :) He also isn't doing lung function yet! Not sure when they start that! Your lung function is great!!! People really need to hear more stories like yours..its all so gloomy normally :flow:

Its funny you mention hot tubs though...this is one big thing for me as on the forum they are a huge no, no! Although my dad and MIL/FIL have one. What is it about them thats not allowed? I know he'd LOVE it in there! They've both said that they'f empty the hot tub and re-fill it so its fresh..we'd be the first in it so no one elses germs would be in there?! Do we think it'd be ok? Now hes getting older he asks about it all the time..and I'd love to take him in with me :) 

xx


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## xLisax

And honestly I LOVE the fact we all have each other to talk to about everything now..when I joined just over 3 years ago I was the only CF mum on here, so this is lovely! :flower:

And I'm so happy that all of our stories are so positive...yes CF is rubbish but it just shows that its not the doom and gloom of old! 

Do any of you have Facebook? 

:hugs:

xx


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## mum2be257

It is great to have people on here to talk to!

I find the cf forum is very DONT do this...
I also thought that saunas/jacuzzi's and steam rooms were a definite no due to the stagnant water ( spelling?)? i am really unsure what to do about these bath toys...as long as she doesn't squirt them in her face and just into the bath water there would be no harm, make sure I get all the water out and soak them in milton? Even sterilize them after every use? As for her sponge i don't really see much difference between a sponge or flannel...they both dry out?! It's all sooo much to think about!!! 

We have just got to the stage now that she has learnt to put her feet downa nd push up..she no longer needs something to push against..this makes giving her nebuliser a LOT of fun!! she ends u p half way across the room, trying to hold her head and the mask on her! x


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## mum2be257

Also just thinking how does having a friend with cf affect you if your brother/sister has cf? say for instance we met up and Sophie and Evie were in contact, then you go home to Max...would there be any risk of infection? x


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## Tinkerbell3

*GypsyDancer -* It's funny you should mention the showers ta swimming pools as it's something that had never even crossed my mind :shock: but I bet you're right they probably are dirtier than the pools. I used to go swimming as a school class back in primary school (a very long time ago now) I was more worried what might grow on my feet than my chest, however I go swimming once a week now (its great exercise for the lungs) and have to admit I also just wait until I get home to shower.

Congratulations on your new bump, wishing you a great 9 months x


*xLisax - * Your attitude is great and so nice to hear, you have what sounds like the perfect mixture of being sensible but letting Max actually be a normal child.
It's get fustrating and slightly upsetting to see parents continously saying no my child is not going swimming, no my child is not having a pet, no my child isn't going abroad or to a theme park :nope:
Oh I've seen posts about the shower head thing, I don't change mine either and neither did my mum apart from when it may need changing just like anyone elses.

You have hit the nail on the head about it ruling your life, growing up and still now it's a pain in the bum when you're feeling unwell and just want to go out and play with your friends or for a night out but your body is telling you to rest or on IV's and it's a bit of a controlling/routine 2 weeks that you want to spend the rest of the time doing what everyone else can/does and not being ruled.

Thats great to hear Max hasn't had any IV's yet, lets hope that continue for some time. I thought he may still be a bit young for lung function but wasn't too sure, its hard to remember some things as it was so long ago now.

The hot tub, I think in the end you have to use your own judgement (I don't want anyone here thinking I'm coming along telling you all how to bring up your children) so I'll just explain if it were me and about my use of them.
Since I can remember I've used them (public ones) unfortunately never been fortunate to know anyone with one ;) I'd love one of my own as I find them so relaxing. If I've been on holiday or to a spa or hotel with one I don't even think about should I really be getting in this? I've never had any trouble from using them and those are public ones so I imagine one that was only really used by family would be even safer espcially if they empty and re-fill it so it's fresh water for Max. 
I've always had the attitude that I'll try something, if it doesn't agree with me and I find myself chesty after then I know it's not sensible or a good idea but if I'm fine then theres no problem and I'm not missing out on something INCASE it might be a bad idea

You're doing fab and Max is very lucky to have such a wonderful mummy who is so positive about things and that is the attitude that he will grow up with :hugs: 
I'll PM you my facebook incase you'd like to add me xx


*mum2be257 -* To be honest the steam rooms are probably not the best idea on my part, they can be a breading ground for germs but they way I see it is I enjoy them (don't stay in there for too long) and they have never caused me any problems with getting chesty or coughing more up after using them so I'll continue to do so until I notice an negative affect from them.

No one can really tell you what to do about the bath toys and Sophie is still so newly diagnosed that you'll no doubt be unsure about what to do about a lot of things/situations but as I say in time you'll learn to use your own judgement and not feel so worried about things.
Do what feel right to you, if you don't feel comfortable giving her the toys yet then go with your heart but if you feel you want her to have them just make sure they dry out properly and she'll be fine :hugs:

As for the meeting up with friends with a child with CF this is a very personal thing and one which only you can make you own decision about but CF bugs can't be passed onto another CF person through someone without CF fromw hat I've always been told.
Back when I was a child and had to stay in hospital, at clinic etc cross over infection wasn't the same as it is now infact they had no problems what so ever with CF patients mixing espcially if they grew the same bug(s)

When I was about 3/4 my uncle (mum's brother) met a woman with CF this wonderful lady went on to become my aunt. We never, ever avoided each other only when on IV's with a bad infection and we never had problems with catching each others infections xx


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## mum2be257

https://www.facebook.com/profile.php?id=1320388086 This is me on facebook x

thank you all, It is such good advice, i will give her the toys and see what happens, if they begin to look a bit dirty i will chuck them out straight away. There are so many question sthat keep cropping up! x


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## Tinkerbell3

Perfect idea, i've sent you a friend request x


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## mum2be257

just had a thought...If a sibling of someone with cf cant play with someone else with cf for fear of passing on infections, how come they do parents meetings? surely this poses a massive risk? im not saying your wrong and dont want to sound like im being 'funny', just wondering! x


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## GypsyDancer

mum2be257 said:


> just had a thought...If a sibling of someone with cf cant play with someone else with cf for fear of passing on infections, how come they do parents meetings? surely this poses a massive risk? im not saying your wrong and dont want to sound like im being 'funny', just wondering! x

I thinkkk if you mean parent evenings for parents of children with cf..they probably expect you to not bring your LO's along..
I have read stories on the internet about bestfriends having CF so i suppose some people dont worry so much either xx

My facebook is www.facebook.com/tamsinashleywilson 
if any of you would like to add me x


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## mum2be257

ones without the children. Surely all the parents swap their bugs then go home to their children with cf? Same principal as (sorry to use you as an example!) sophie playing with evie and then going home to max? So can people with cf hang around others who have a sibling with cf? X


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## GypsyDancer

mum2be257 said:


> ones without the children. Surely all the parents swap their bugs then go home to their children with cf? Same principal as (sorry to use you as an example!) sophie playing with evie and then going home to max? So can people with cf hang around others who have a sibling with cf? X

I have no idea to be honest hun :nope:
I always thought the kindve idea behind children with cf not mixing was because they grow more harmful bugs/bacteria than a normal "healthy" child would iykwim? So if they mixed..and one had some type of bacterial growth common to cfers..then the other without it could catch it..i dont THINK a "healthy" child would catch it..or they wouldnt have such a problem from it as their lungs can clear it away unlike children with cf? Does that make sense? :blush: I dont know if thats right thats just the jist of what ive got from it..x


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## xLisax

^ Thats the jist of it I got too...Evie wouldn't be able to catch or grow the type of bacteria that a CFer could, so there would be no way that she could take it home and pass it onto Max iykwim? :thumbup: So yeah, Evie and Sophie could play together without any worry about Evie passing something from Max onto Sophie or vice versa :D Still with me? :haha:

& yeah I believe the parents evenings are meant for the parents without the children coming along :)

I have this problem sometimes, as my little sister (8) has a good friend with CF (mum2be I noticed you have her mum on Facebook! :) ) and so we always have to make sure Max and her aren't in contact...when it comes to my little sisters birthday, she has to have two parties...one for friends and one for family! :thumbup:

xx


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## mum2be257

thats cleared it up, thanks!!! Also... Sophie had her 2nd set of jabs yesterday and last night was a bit unsettled, gave her some calpol but noticed throughout the night she was coughing a little bit, not chesty at all, almost dry, nothing today though. Should I phone the hospital or just wait and see if she starts coughing today? x


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## xLisax

Evie had her jabs on Friday hun and shes coughing and has a runny nose too :thumbup: So I'd say its connected to the jabs..but as you say, if it gets worse or isnt gone in a couple days give them a call..or if it'd put your mind at rest give them a call anyway :hugs: 

xx


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## Tinkerbell3

Yep as others have said CF bugs can't really be caught by non CF people like us with CF can catch them, sorry if I didn't explain it properly.
Yep those parents meeting/groups are meant for parents only, they used to be for the CF patients too (they even used to do group days out in my hospital) but over the last 10 years they have changed things and no longer like CF patients to mix due to risk of cross over infection.

I wouldn't ring the hospital yet, wait to see how she goes. Some days/nights you may notice she will be coughing a bit more than others most of the time it's pretty normal but if the cough persists speak to her team.


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