phonecall to say cystic fibrosis

[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 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!

He has a course of anti-biotics if he gets a cold etc, just to stop secondary infection & 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

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 When he was a baby it used to make him fall asleep!

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

xx

 

[CityGirlEire]

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

 

[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

 

[babyerin]

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

 

[Dragonfly]

My son Alex carries the gene.

 

[xLisax]

Ah I'm so glad that everythings going so well! 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

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

x

 

[mum2be257]

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

 

[xLisax]

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

 

[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 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 xx

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

 

[xLisax]

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 coming your way!

xx

 

[Tinkerbell3]

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 coming your way!

xx

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

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 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 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 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

 

[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

 

[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

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

 

[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

 

[GypsyDancer]

Hey i know this post is a little old but ive only just come across it my little boy also has cf..
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
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 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

Im rambling now, but just wanted to give you
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

 

[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 I've never changed it! We've also just bought Max a guinea pig who he has named Plop We just make sure he doesnt go anywhere near the hutch and that Plops feet are hay/straw free! Max adores him

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 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

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

 

[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!

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?



xx

 

[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

 

[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

 

[Tinkerbell3]

GypsyDancer - It's funny you should mention the showers ta swimming pools as it's something that had never even crossed my mind 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
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
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

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