Anybody like to buy a 2006 calendar in aid of Cystic Fibrosis?

[JESSnutsRoastinOnAnOpenFire]

Some parents (not I, I must confess) have put together a calendar called CFaces (with lots of pictures of children with CF all smiling happily! ) for 2006.. and if you would like to buy one, you need to do so via the website of the lady that has done most of the work... BarnesBoysWebsite . She has two boys with CF.

My 13 year old DS has CF.. but he is not in the calendar as I only found out about it this week.. gave myself a few months off from posting on the CF forums.. and missed all the action.

It's a lovely, glossy A4 sized calendar - I have one here!

SJ x

bump?

hi,my daughter has cf.shes 15 months old,and is on all the usual meds.hope you dont mind me asking,but has your son ever had problems sleepng and feeding?ive seen that you say he is 13,but i got told at our clinic that cf kids often have these problems.i dont know anyone else with a child with cf,and although the doctors know their cf stuff,they dont have to live with it do they.hope you dont mind me asking!!by the way are the calendars available through the cf trust website?

Hi Stephanie. The calendars were organised by someone (a mum) who posts on the Meeting Place which are forums for people with CF, their parents/carers, other halves etc. You might find the forums helpful with 'not knowing other CF families' issue - no risk of cross infection either .. always a risk if you DO know a family with CF! Small word of warning though.. the downside of the forums is hearing about other people (and/or their kids) getting ill.. I made friends with quite a lot of the adults with CF and I admit I find it hard sometimes hearing about their problems and trying not to apply it to my DS who is so well mostly.

DS did not really have much in the way of feeding problems (once diagnosed at 5 and a half weeks) but was always quite sick quite easily which used to stress me out when he was a toddler and didn't eat much anyway! He is great now though - a good weight and and eats everything in sight as the dietician wants him to! He is on the 92nd and 97th centile for weight/height so the clinic are happy.

He wasn't a great sleeper - didn't go through the night until he was 14 months old.. but again, although it was a nightmare at the time, grew out of it eventually (by the age of 3-ish). Don't think this was really CF related.. more the fact that I was a neurotic (thanks to CF) and inexperienced parent who allowed him to develop bad habits!!

Hope this helps.. you are free to CAT me anytime of course. Hope your DD stays well

SJ x

I'll buy a calendar, thanks for the link. My neice-in-law's DP has CF (he's 21 - I think) and I've learnt more about it through knowing him, really did'nt know much before. Will go to the site as soon as I have time! Good wishes to you and DS,

Elibean xx

Thanks Elibean

jess,my dd's cf nurse told us to be careful on websites concerning cf,saying that alot of people use scare tactics (especially the american ones).i will take a look though at he meeting place.my dd is doing really well.shes not gaining as much weight as a non cf child,but we were told that the weight charts are based on bottlefed babies,and dd is breastfed(which im trying to stop!!)she hardly eats and currently is mainly eating full fat yoghurts (i usually give her 1 with creon before her normal food) but now she just picks at her food.does your ds have any liver probs?dd was diagnosed at 6 weeks (results from the guthrie test showed it up,we'd never even heard of cf)and after the initial sweat test,she had bloods taken which showed liver probs.did you ever have probs keeping ds still for his physio?dd is a little madam,doesnt want to keep still at all!weve just got her to stop spitting her antibiotics out,so hopefully,keeping still will soon follow!!

Stephanie, all the probs you describe sound familar. We used to sing nursery rhymes to DS to keep him occupied while across our laps. Seems such a long time ago now when I imagine putting my big strapping lad across my lap!

The hardly eating anything scenario sounds very much in common with what breastfed babies can be like! Nothing compares to it I guess. (I didn't bf DS1 (with CF). Cf was not part of the Guthrie test then unfortunately and I assumed it was 'my fault' (ie my milk!) that was stopping him gaining weight so I went onto formula at 8 days.)

I'm sure she will progress with 'proper food' as you get more successful at weaning her of the breast - not easy I know. I bf my other 2 - my youngest has cerebral palsy and other probs and I didn't succeed in getting him off the breast until he was 2!

DS's liver has been fine so far. He has actually been very well all along and is now except that he has pseudomonas which he managed to avoid until he was nearly 12 (quite an 'achievement'!) so hadn't even had nebulised antibiotics until last year and so far has never had IVs (touchwood.. as he is none too happy about needles!)

Word of advice that you probably aleady know (so humour me!). Get her swimming as soon as poss and into a club at 4, 5 or 6. DS has (luckily) really embraced swimming and trains for up to 4 hours a week. At a recent annual review where his lung function scores were v.impressive, the doctor says that this really has to be put down to the swimming training as this is the best possible sport for lung health.

Oh and get her a little trampoline and consider getting her a proper one when she is older.

How do you give her her enzymes? We used to break the capsules open and tip into a little fromage frais yogurt once he was your DD's age and able to have solids.. although initially, staight into his mouth. He used to gag on them a bit and we'd quickly slosh them down with milk, lol!

And re physio.. any time from the age of 8, you will no longer be doing the percussion kind.. she will start to do it on her own (with you standing over her no doubt as I do with DS!) doing breathing exercise using a PEP mask or a Flutter. DS has both.. he does the Flutter (a little inhaler shaped thing with a ball bearing in, which 'flutters' and shakes the chest as he breathes through it) in the car after swimming training to save time when he gets home.

Wishing you love luch and ~~~~~healthy vibes~~~~~~

SJ x

weve been told about getting her into swimming,dancing and trampolining.at the moment she loves dancing (and at 15 months can operate the stereo better than us!!)she has asthma so has inhalers and we're at clinic (annual review) next friday,and the cf nurse said we need to ask the paediatrician about a nebuliser.she has creon micro granules.she has 3 scoops per big meal and 1-2 with snacks.we just mix it with fromage frais and give it before her meals.petit filous are great because they are'nt big portions.before she was weaned we used to give her the creon on a spoon with a little water and drop it in her mouth before her feeds.she used to gag and cough and splutter!poor thing.the worst was giving her the medicine.she used to bring it all back up.and giving her salt,well,she used to hold her breath and go blue!very scary at the time.in summer we mixed the salt in with her food which was so much easier.i was so pleased when we were told to wean her early!!shes on back up at the moment.shes had quite a few coughs and colds this year.we live in wales and our specialist team are from Alder Hey.they come here twice a year for the annual review clinic.we got told that the professor we saw last year has now left,and the doctor we'll see next week is just a normal paediatrician.they keep swapping and changing.just when you get used to one doctor,and they get used to your child,they leave!i'm hoping that his new doctor wont want to take Alyssa into hospital.the last one we saw said she might be admitted if she had another cold.so fingers crossed that when we go he wont admit her.i hate it when they take blood,as they never can get a vein and really put her through the mill.has your ds had the flu jab yet?im hoping to get an appointment tomorrow to get hers done..

Was the prof Dr. Heaf? We used to live in Wigan (area) and were under Alder Hey for annual reviews as well. Yes he was very good.. and had a special place in my heart for awarding DS '100%' on his xray which he said he seldom does!

I know it's hard getting used to new team members. We live in the south again now (moved up North when DS was 4 and back when DS was 11) so have encountered several clinics. We briefly attended Booth Hall, Manchester but swapped to the Wigan team due to a regrettable incident with a CF nurse who did not understand nor care to understand CF children who had 'needle phobia'! (I hestiate to even call it a 'phobia' as there is nothing irrational about being afraid of a needle jabbed into your skin is there!)

Yes DS's flu jab is done and dusted. Did you know you.. as DD's parents - can get one done as well?

SJ x

the prof we saw was prof ros smyth.dont know why but our cf team were all worried when they knew she was coming!!we live in north wales (criccieth) and our hospital is in bangor.theres nothing good i can say about needles!im petrified of them!ive got an under active thyroid and have to have blood taken regularly,but ive got none existant veins so it means they have to poke about!hate it.i get really nervous before i go to have it done.i asked last year if we could have the flu jab,and our gp said there was no need.we are forever complaining that our gp doesnt know much about cf,and the paediatrician said she'd drop them a line.when she was first diagnosed,we went to the gp for something and we'd been told that we couldnt stay in the waiting room incase she caught anything.we told the receptionist this and she told us to stand outside!(it was raining)we were expected to stand there with a 6 week old baby in the pooring rain!we told our physio and she wents nuts,charged in there and read them the riot act!!weve learnt now,that as parents,we know more about cf then alot of the so called professionals and specialists.one doctor in the hospital told us to go home after we'd taken her there because she wasnt breathing properly.two days later she was rushed back in and after a chest xray,they found she had a bad chest infection.one doctor we took her to (this all happened one weekend!we saw 4 different docs!)told us that the crackling noises on her chest were normal noises for a baby!i think there was shortage of gps that weekend as he looked like he'd been dug up from his grave!he didnt know anything about cf.sorry to rant on!have you ever had any bad experiences with doctors?

the prof we saw was prof ros smyth.dont know why but our cf team were all worried when they knew she was coming!!we live in north wales (criccieth) and our hospital is in bangor.theres nothing good i can say about needles!im petrified of them!ive got an under active thyroid and have to have blood taken regularly,but ive got none existant veins so it means they have to poke about!hate it.i get really nervous before i go to have it done.i asked last year if we could have the flu jab,and our gp said there was no need.we are forever complaining that our gp doesnt know much about cf,and the paediatrician said she'd drop them a line.when she was first diagnosed,we went to the gp for something and we'd been told that we couldnt stay in the waiting room incase she caught anything.we told the receptionist this and she told us to stand outside!(it was raining)we were expected to stand there with a 6 week old baby in the pooring rain!we told our physio and she wents nuts,charged in there and read them the riot act!!weve learnt now,that as parents,we know more about cf then alot of the so called professionals and specialists.one doctor in the hospital told us to go home after we'd taken her there because she wasnt breathing properly.two days later she was rushed back in and after a chest xray,they found she had a bad chest infection.one doctor we took her to (this all happened one weekend!we saw 4 different docs!)told us that the crackling noises on her chest were normal noises for a baby!i think there was shortage of gps that weekend as he looked like he'd been dug up from his grave!he didnt know anything about cf.sorry to rant on!have you ever had any bad experiences with doctors?

duh!pressed the button twice then!!

Had lots of bad experiences with GPs I have to say.. many looking like they have been 'dug up from their graves' (LMAO !)when they are overworked, stressed, out-of-hours doctors.. and I am sure it's because of shortages etc within the NHS.. but you don't want to know about all that when you have a sick baby do you!! I am that the receptionist sent you outside in the rain! So is DH who I just read it out to!!

The paediatric consultants we have been under for CF have been good I have to say. The clinic DS now goes to is not the one we should be attending, technically, as the area we moved back to was not in the same town as before so we are under a different health authority now.. but we asked to go back to our 'old' consultant who I knew and trusted from when DS was diagnosed to when he was four. He was pleasantly surprised to be reaquainted with such a big, healthy, sporty boy .. but now he has gone and retired!!!! (How dare he! ) We now have a very well qualified lady consultant who clearly knows her stuff.. but with whom I have crossed swords already because she sent a report to our GP (and us - I signed a form to make sure I get copies of all correspondance concerning DS)saying, among other (quite correct) info, that she hadn't seen DS for five months - she wasn't sure why - it looked like he had missed some appointments but was well regardless!!!!!!! DS has never 'missed' a CF appointment in his 13 years - SHE had cancelled them due to her holiday!! I had had a phone convo with her, which she had clearly forgotten, when I said that this would mean a 5 month gap and the most he ever went was 3 - and she said 'well I am happy with his condition so unless you have a specific concern then it's fine for him to go 5 months!'

I wrote a letter to my GP, cc-ing it to HER asking for it to remain attached to the other letter in both files, stating that he had NOT missed any appointments and why he had had such a long gap. She did actually 'sort of' apologise at the next appointment.. or at least had the grace to acknowledge it. And when I was on the phone to her recently about a sputum result she was complaining about the incompetence of the lab who 'lost' a result and said she might 'set me on them'.. PML .. which I took to mean that she thinks I am pushy.. or asssertive .. or 'something'! Oh well.. I soon learnt that this is necessary.. nobody( cares as much about your child's wellbeing as you do, so you are the one who has to fight their corner. It may be their job.. but it's our life^. And it's very true what you say about the fact that you very quickly learn more about CF than your GP and colleagues will ever know!

SJ x

she sounds a right mare!!!we have three gps at our health centre but we always try to see the same one.she always rings the cf nurse up whilst we are there to double check things with them if alyssa is ever unwell.one of the other gps came out at the time i mentioned before,when she wasnt breathing properly.as she has asthma,i gave her her inhaler.this gp told me NOT to give her it as they dont work!!!i was gobsmacked!why would they prescribe them if they dont work???!!!we didnt trust what he said so took her to the hosp.a 12 year old doctor said her chest was clear,and to go home.then we took her to the emergency 300 year old gp who said her noisy chest was normal!w couldnt get it through to any of them that something was wrong.then the next day was when she got rushed in and we were told it was a bad infection!!think us parents should be issued with white coats,stethascopes and be allowed to prance around the hospital telling THEM whats wrong and how to do things!!(as long as we get the paypacket to go with it!!).well,alyssa is still full of beans and its just gone 11pm!am going to try giving her some weetabix and a quick feed to fill her up,so hopefully she'll sleep!!(i can but hope!)bye for now!!