Calling all those Mums of DCs with cystic fibrosis

[madmumNika]

Hello ladies, my DD was recently diagnosed with cystic fibrosis, which was picked up when she was 7 weeks old after a routine heel prick test. A sweat test confirmed CF and we have started meds and physio for it, even though at the moment luckily she is fine. She is now 10 weeks old and growing faster thanks to the enzymes and we are coming to terms with her diagnosis. I would love to hear from other Mums who have gone through this and how you are coping?

Also does anyone have any magic tips for getting creon into such little babies!! I am sometimes pretty successful but other times it goes everywhere except down her!! Have looked at the CF Trust website which is great but a bit scared to post on their forum yet!

Thanks xxxx

[vole3]

One of the babies in my postnatal group was diagnosed with CF and her mum would mix the creon into some pureed apple on the end of a spoon and then DD would be fed the mixture. She had done this since diagnosis at 3 weeks and it seemed to be working, although over the course of the 6 weeks she did have to keep upping the creon as DD wasn't putting on weight as fast as they'd hoped.
When I last saw her 2 weeks ago she was happy, healthy, gaining weight and not snuffly any more.

[Charlee]

Me!

DS1 has CF he was diagnosed at 2yrs old in Feb this yr.

The CFtrust forum is really friendly so post away you will see mr on there from time to time!

It is hard but it gets easier.

Anything sweet like apple puree or yoghhurt is good for creon.

Its going to be a tought time for you, please email me at

[email protected] for a chat one cf mum to another!

[buffythenappyslayer21]

hi,my dd was diagnosed at 6 weeks.she is now a healthy little 3 year old madam!!

tips for the creon...when dd was first put on her meds,we used t get a 5 ml spoon with a little water and put the creon on that and tip into her mouth.that worked until she was 12 weeks when we could put her on baby rice and we mixed it into that.

we were told by the dietician not to put it on pureed apple when she was under 12weeks,as because she needed it everytime she had a feed,the apple would fill her too much and so she wouldnt ahve as much milk feed as she needed (i was breastfeeding her) and so she would end up having more feeds.

it does get easier as they get older,as you can mix it with things like yoghurt and like my dd now,she will sometimes let us put it straight into her mouth and washes it down witha drink.but do be preprared for teh stubborn stage,where you cant get them to open their mouth or they spit it back out at you!!

i posted on the cf website when we first found out about dd,and yes you do get alot of nice ones on there,but there are also alot that live in the land of doom and gloom.

another of my tips wuld be as soon as yor lo starts getting snuffly,get tehm straight onto their back up (dd's back up is co-amoxiclav) and make sure you always have a bottle in at home so you can make it up yourself when you need it (if your chemist isnt happy to give it to you to make it up yourself,get your physio to go and have a word,saves you having to wait if the chemist is closed on a weekend or something)

also,we were always worried we were panicking over little things,but dont ever think your wasting a doctors time or a nurses time if you are worried about anything.we have often rang the hospital over dd being sniffly,or not feeding well.

anither thing,when you take your lo to the doctors for anything,make sure you are taken to another room.if your doctors surgery say no,get the physio to have a word.the risk of infection is too high for you to be sat in teh waiting room with lots of bugs and germs flying about.it was our cf nurse taht told us about that and we told the receptionist who told me stand outside with dd in the rain!!our physio went in and explained to tehm,and from then on we go straight through into the health visitors room.

medicines and physio are easy to do when they are babies,its when they get to being a toddler and refuse to keep still!!so be prepared for that aswell!!it turns into a battle of wills at times!!!

like i say our dd is now 3,shes relatively healthy (apart from having asthma and hayfever at the mo!) but cf side,shes doing really well.

when your lo is old enough,get a trampoline,the jumping is great for shifting mucous and a great way of tehm having physio and thinking its fun!!we also got a gym ball and dd loves being rolled on her tummy on it,which is great again for getting her upside down (you can do that from the being babies on the gym ball)

sorry to have gone on abit!!we didnt know anything about cf when dd was diagnosed,and its amazing how much you learn in such a short time.you'll soon know when your lo isnt well,you learn what different noises are normal for them (chest noises etc)

if i can help at all,or if you fancy a chat,my email is sjpfunkychicken @ fsmail . net (just stick it all together!!

[Charlee]

Hey Buffy i didn't know you were a cf mum, would you mind if i emailed you for a chat? we are still relitavley new and i forever thinking of things i need to ask someone!

I also like to chat to people in a simmilar situation.

[buffythenappyslayer21]

of course i dont mind charlee!

we had no one to talk to about dd having cf when she was diagnosed,only teh hospital staff,and with all respect to tehm,they dont live with cf every day,so alot of things we just had to find out ourselves,so anything ouy want to ask....just ask away!!!!

look forward t hearing from you!!

[chookyegg]

hi i've never done anything like this before but my dd was diagnosed with cf when he was 4 weeks old and is now 6months. its so hard to get your head around. we're lucky that he's gaining weight well but his chest is up and down as he's had pseudamonas a couple of times which needed ivs.

i would love to hear from anyone who is trying to adapt to this way of life too

[madmumNika]

Thank you for all the replies, haven't been online for over a week since I posted! It really helps hearing others' experiences.... I guess it takes time to get used to CF. will post more when I don't have a toddler trying to get on the keyboard!! xxx

[ellymae]

my little girl is nearly 6 months old and has CF. She had a meconium ileas (a bowel blockage which apparently 1 in 10 CF babies are born with) and had to have life saving surgery at 3 days old. Although she wasn't formally diagnosed until she was 3 weeks old I'm certain that the doctors new exactly what they were dealing with right from the beginning so fortunately she has been treated for CF practically from birth. Unfortuantely for various reasons she had to spend the next 7 weeks in hospital so I didn't really have the best of starts to being a mum.

She is doing really well now though and is putting on weight better than expected. Developmentally, despite being the youngest of the 6 babies from my antenatal group, she seems to be one of the most advanced. Also, apart from giving her the daily medication and physio she is probably the easiest baby to look after. She sleeps through the night, is rarely grumpy and always seems to be smiling. I would love to know if these characteristics are typical of CF babies or whether I've just struck lucky?!

She has been taking apple puree with creon since she was 7 weeks old - before that the hospital were trying to wash the creon down with milk which was a complete nightmare. However, the dietician at the Royal Brompton where she is being treated told us about the puree and things are so much easier with it. I've never heard of it causing problems for babies' appetites before 12 weeks old though.

She is now eating solids twice a day and so we have the fun of trying to adjust the levels of creon accordingly....At the minute I feel like I might just as well paste the food purees straight onto her nappies and cut out the 'middleman'. Will we ever see the day when there is a solid poo in her nappies??

When things are going well I don't really think about the CF as I just enjoy being with my gorgeous girl but I am still struggling to come to terms with the diagnosis. There is not a day goes by when I don't wish it would all go away and I do still have some very dark days. This is the first time I've shared my feelings with other mums who know what I'm going through as I've so far tried to avoid CF related websites as I can't face the potential doom and gloom that I might find there. However, I am planning to go to the CF Trust Parents Conference in London on the 13th October as I feel I want to better informed and I would imagine an event like that will be professionally run and info passed on in a controlled manner. Is anyone else planning on going?

Finally, has everyone applied for Disability Living Allowance and got the level they feel they deserve? I am in the middle of an appeal as we were only given the low level and yet our CF nurse had just helped another family in exactly the same position who were given the highest one!

I don't get a chance to log on much to the internet as the little one doesnt really sleep during the day, but I'd love to swap ideas and highs and lows with the rest of you. My antenatal group are very supportive but they haven't really got a clue. Yesterday I had to miss out on our regular coffee sessions as one of the other mums rang to say she had a sore throat. Whilst she volunteered to stay away, it's my problem to avoid colds not hers so I said I would stay away.Lets just say I wasn't laughing when I put the phone down and faced the prospect of spending the afternoon on my own...

[Toriey]

I'm a 22 year old with CF and am currently 6 months pregnant hence hanging about on MN. I just wanted to offer my services as an experienced person with CF, I know quite a lot about the condition and used to give informal 'tutorials' to medical students at the Churchill in Oxford. I have also been through all the phases of refusing to do treatment and moaning about physio, hiding pills all the usual horrors that CF kids inflict on their poor suffering parents. I am also, I like to think, something of a success story, I did well at school getting mostly A*'s and have only put my degree on hold because of my pregnancy.

All in all just a shoulder to cry on and laugh with if nothing else, I know how isolating CF can be, especially for parents, when I was diagnosed pretty much all of the 'friends' my parents thought they had buggered off and left them too it.

Get in touch if you want too, hope you and all the family are keeping well

an antithesis of_ sorts @hotmail. com

[madmarriedNika]

Just thought I might resurrect this thread! Realise there might be other mums on MN now who may want a wee support thread for coping with their LOs CF... Although the CF Trust's forum is great too (but sometimes I find it a bit scary)!

Our DD is now 1! Can't believe how time has flown. Winter was fairly rough, lots of antibiotic switches as she seemed to catch every cold going and badly...BUT still hasn't grown anything too scary (just Haemophillus influenzae (sp)) thank goodness. She was on ventolin nebulisers & DNAse due to a bad chest which started in November- but since early June we've kicked the ventolin (hooray) and may get a break off the DNAse after her next check-up- her recent chest x-ray showed a big improvement.

We've had our struggles weight wise but again she's finally got growing and has amazingly made it onto the 50th centile...for the moment! And she has a tendancy to really fight her physio, often ending with both of us in tears, but we're sussing out a way of distracting her that helps...Although know we're headed for the "terrible twos" so slightly nervous of that WRT getting her to comply to physio, meds etc.

I do feel generally a lot more positive than we did at first but still have dark days every now and then, wish I could do anything to take CF away from her... So we decided to do some fundraising for the CF Trust and with the enormous help from some close friends have managed to raise £5.6k this year! Not sure we could repeat that amount of fundraising again but was overwhelmed by the response of friends & family.

As often is the way out of bad things come much good.

Thinking of all fellow CF mums (& dads etc!) & your LOs...

Toriey- how did the rest of your pregnancy go & how is your LO? Lovely to hear your story- thank you x

[boohockey]

Hello!
My DS is as yet undiagnosed but being treated for CF (I know, limbo, great...)
He is 10yo and on the usual physio, dnase, IV's every 3-4 months and loads of asthma meds. Until last year we thought he had asthma!

I occasionally post on the CF trust website but do feel a bit intimidated by it as we don't have a formal diagnosis - almost like I don't really belong but then he had a lung bleed the other day and I think I must belong!!

It's a hell of a roller coaster this CF thing and it's great to know there are others out there going what you are going through, especially with the cross infection rules meaning that it's not easy for us to meet in person with our dc

Hang on in there!
xx

[boohockey]

just bumping this thread1

[emmaruth]

Hello
I know this thread is really old but i am new to MN But i have a three year old with CF and would love to chat to anyone who has children too
Emma

[raindroprhyme]

Hi Emma,

i have a nearly 5 year old with CF.

this thread pops up every now and then but isn't really well used.

have you been on the CFtrust forums they are very informative but can be overwhelming if you LO is well.

My Son is thriving no hospital admissions and very little adverse affects.

Hope your wee one keeps well.

[mintyneb]

raindrop is right Emma, there aren't too many mums in this position. I tend to lurk on the CFtrust forum and post there occasionally if I need some extra help or advice.

I have a nearly 3 year old DD who also keeps really well although is giving us fun with potty training at the moment. We have the dreaded 'annual review' coming up in the next few weeks so will be glad when that's all over and we can get back to normality again

hope all is well with you

[emmaruth]

Hello
Yes i lurk on cf trust too

My daughter is keeping really well we also have the annual review in March or April

We have had no hospital admissions either

Hope all is well with you all too

[scoobydont]

Hi

i have a dd who is 8 with CF. she is mosty well with on average 1 hospital admission per year.

She is on perminant antibiotics, and has DNASE daily through a nebuliser,

she does trampoling, horse riding, swimming and has just started brownies - so still lives life to the full.

i don't use Cf trust website. Am usually on mumsnet most nights lurking rather than posting but always available for a chat

[emmaruth]

Thank Scooby :-)

[mintyneb]

hope you are all well.

so the trauma of the annual review has started..... Had DDs blood test yesterday and both she and I ended up in tears. they had real problems finding her veins this year and ended up making three attempts in 3 places before they got what they needed. At the end of it she just said 'I want to go home now, my hand is very sore' :-(

We have the full review in three weeks time where she'll have the chest x-ray and the ventilation scan. The x-ray doesn't really cause too many problems but the vent scan is just awful. We're at the Brompton where they do this scan until children are old enough for lung function tests but I don't think every CF centre does this. Does anyone else have to go through this test? DD has had it twice now and pretty much screamed the whole way through both times.

Whilst I'm in a moaning mood, does anyone else struggle emotionally around your DCs birthday and/or diagnosis? I find it really hard as DD is our first (and probably only - thanks CF) and we had no idea there were any problems til a few hours after she was born. Fortunately the midwife noticed her distended tummy and next thing we know she was being transferred to another hospital for 2 lots of surgery on a blocked bowel and 2 months in hospital!

I guess that as she is still so young I am easily reminded of the surge of excitement and joy I had as I approached my due date and all the thoughts and plans I had for her future. Don't get me wrong, as I see it there is no limit to what she can do but I'm sure you all know what I mean when I say that things haven't quite worked out as expected.

Still only a month or so to go and this down period will be over and I can start to look forward to spring and summer and lots of outdoor fun

sorry for the moan, hope everyone's LOs are well and driving you mad (in the nicest possible way of course!) this half term :-)

[raindroprhyme]

i am the same as you mintyneb. this time of year is hard. my DS was picked up through the heel prick screening so my perfect newborn was ruined at 3 weeks old.

Been even worse this year as his baby brother was born 4 days before DS (wcf) 5th birthday and we had to wait 10 days for the baby's Cf results (he is all clear). Plus got DS (wcf) annual review blood results back and they felt the need to phone on his birthday to say his blood sugar was high and we would need to 24hour monitoring.

Not a good time of year for us but DS (wcf) keeps well and has never been admitted to hospital. He is a gorgeous wee boy and is so resilient and takes everything in his stride.

Annual reviews are horrid just remind you there is something wrong with them.

[chelseamommy]

Hi

would love to hear how everyones babies are doing now that so much time has passed since posting last? My son is 8,5 months and diagnosed at birth. Doing well on growth and weight but recently had his first pseudomonas infection which has really scared the living s*it out of me!! struggling with nebs! Would love to hear how nursery/school has affected your kids health? Dreading that.....