Message Boards for the CF Trust

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jclark

Posts: 2
From: berks
Registered: 05-Dec-2006

getting out and about
Posted: 05-Dec-2006 14:00

Reply

Hi everyone thanks for the useful advice on these pages. I have a son wcf aged 17 months and have up to now kept him away from toddler groups and activities etc. What I would like advice on is what clubs such as tumble tots, swimming , playgroups etc do people take their children to and how do they minimise risk of infection etc. my son is a sociaable boy and though i would ideally keep him wrapped in cotton wool I know this is not possible it is finding the happy medium that i need help with. Any advice would be much appreciated.

lmstepney

Posts: 31
Registered: 06-Nov-2006

Re: getting out and about
Posted: 05-Dec-2006 15:04

Reply

Hi, we have 2 sons with CF aged 4 and, 18months. They both do all the usual activities including all those you mention. We haven't recently been swimming but, not because of infection risk. It's generally considered that the benefits of all these activites far outweighs any risk of infection. Including swimming. There are DIY water test kits for Pseudomonas available. The older son also delights in digging up worms and, dirt. Though we do of course try to prevent this!

preciousjewel

Posts: 59
Registered: 06-Nov-2006

Re: getting out and about
Posted: 05-Dec-2006 15:20

Reply

My centre have said not to let my lpwcf aged 19 mths go to nursery until she is 3 as she will pick up bugs etc.... I was due back at work when she was 6 mths but have decided to stay away for now... I have her name down for pre school. We go swimming and she goes to the play area where other kids are.. I have a 3 yr old who brings home nasties..so thats enough for now x I say go for it and swimming is one of the best exercises.. If we take her swimming we don't do the nighttime physio!!!

ladybird

Posts: 226
From: Northants
Registered: 05-Nov-2006

Re: getting out and about
Posted: 05-Dec-2006 15:24

Reply

I take my 19mnth old with CF anywhere and everywhere. I'd rather his immune system was built up now than being subjected to all of the nasties later on. I also have two older boys, one at playschool and one at school and Ocean (wcf) won't be treated any differently to them, he will go to the same playschool as soon as he's ready (and they're ready for him!). We go to a toddlers group once a week and we stay amongst people with colds - I do look out for anyone with particularly nasty runny noses or coughs, but so far haven't had to leave.

To put it bluntly I'd rather he had a full, happy life with a few risks, than one swaddled in cotton wool and miserable because he's not able to do what his peers do. If it were me with CF then I know how I'd rather live.

BeckySerenDylan

Posts: 146
From: Suffolk
Registered: 06-Nov-2006

Re: getting out and about
Posted: 05-Dec-2006 15:28

Reply

When my first born was diagnosed, I was told to keep her away from toddler groups etc., until she turned 1, so that she wasn't exposed to so many bugs. Because she'd done so well, by the age of one, they said she could start toddler group, and since then, she's gone to anything and everything she's wanted to, except where there might be smokers or smoky environments.

When my son was diagnosed, they said there was no point in keeping him away from groups etc, as his sister was already going to them and would bring home any bugs anyway. So he went to a toddler group a few times, and started nursery 2 afternoons a week at 11 months old.

Since then, he regularly goes to nursery 2 mornings a week, and Social Services Children With Disabilities team are about to boost that up to 5 mornings a week with some funding from them.

Becky x

NorthernStar

Posts: 24
Registered: 02-Dec-2006

Re: getting out and about
Posted: 05-Dec-2006 15:42

Reply

I'm not a parent but a person with CF. I swim almost daily and my consultant raves about swimming being a great form of exercise for people with CF. I am a 'typical' CF person in gene terms (2 copies of delta F508) but not typical in terms of lung function - I'm 24 and my FEV1 is still around 90% most of the time - and I think swimming has a lot to do with this together with the other sports that I do.

There will always be concerns about mingling with people and doing things like swimming or outdoor sports, but I think it's important to build up a healthy immune system and be as active as possible.

Sorry for board hopping & best wishes.

Meggie-Moo

Posts: 26
From: West Midlands
Registered: 07-Nov-2006

Re: getting out and about
Posted: 05-Dec-2006 16:13

Reply

Hiya,

Meghan(8) is doing as much as she can fit in!!! all her own choices

- Cubs,Ballet Tap and Disco dance Brownies and Swimming lessons....

She also went to a Playschool from just over 1 years old.

We were told not to wrap her in cotton wool and try to let her do what she wants to!

Have a word with whoever is in charge,discuss and worries and possible solutions before hand- They should understand

Clare
xxx

Annabelsmum

Posts: 7
From: North West
Registered: 06-Nov-2006

Re: getting out and about
Posted: 05-Dec-2006 16:31

Reply

Hi
I take Annabel (16mths) to playgroups everyday.
Personally I think that she is better off getting these things now whilst she is little. It would also drive me insane if I didn't get out everyday.
The only thing I do is mention it to the people in charge just in case there is someone else - although the chances are slim.
Annabel goes to tumbletots and really enjoys it - plus I see it as introducing her to exercise at a young age.
Whereabouts in Berkshire are you? We are hoping to move to Newbury in February and I was wondering which hospital we would have to go to?
Thanks
Karen

cupcake

Posts: 141
From: england
Registered: 02-Mar-2004

Re: getting out and about
Posted: 05-Dec-2006 16:31

Reply

I can't believe CF centres tell parents to keep their children out of nursery or playgroups until they reach a certain age! What changes once they get older? they are still able to catch all the same bugs! If anything I'd have thought it would be worse to keep them away as the odd bug helps build the immune system.

If children wcf are kept away from other kids it is just cruel and I personally would use my own common sense than listen to advice like that. Its doctors like that who create 'paranoid mummy sydrome' and make parents worry about everything their child does. We spoke with our Dr about playgroups and nursery etc... and they had no concerns and encouraged us to go and not keep her away from others. If they were kept away what would happen when they start school and are faced with 30 other children. They'd be worse off surely, and they wouldn't be ready socially if they weren't used to big groups of other children.

As far as activities go, she is 3 and swims regularly and is always dancing and running about. She goes to nursery 5 afternoons a week and loves playing with the other children. We also have her name down for swimming and trampolining lessons once she is old enough. Physical activity is great exercise for the lungs and is encouraged in pwcf, so anything like tumble tots would be good for them and he can socialise at the same time. I used to take my daughter there when she was younger and she loved it and still has the DVD to dance to at home!

My daughter gets treated the same as any other child and the only places we avoid are smokey ones as the aggravate her chest. It can be hard not to worry, but at the end of the day I want her to be happy and healthy. I don't want her to grew up thinking 'I can't do that because I have CF'. I want her to do what everyone else does and I don't want to make her feel any different to anyone else. It would make us both miserable if we had to avoid all the usual mother and baby things, so we don't avoid them. We go and have fun!

michelle.n.

Posts: 2
From: Derry City, Northern Ireland
Registered: 01-Dec-2006

Re: getting out and about
Posted: 05-Dec-2006 16:54

Reply

Our daughter Olivia(3wcf)does everything that her older sister does, at the beginning we were afraid to take her some places but not any more. I couldn't even contemplate not allowing her to do things now, she wouldn't let me stop her anyway!!! I am,however, a bit worried about swimming pools, someone mentioned DIY pseudomonas kits, where do you get them?

madmags

Posts: 79
Registered: 05-Nov-2006

Re: getting out and about
Posted: 05-Dec-2006 17:01

Reply

Don't get too worried about swimming pools. Nim has been swimming at least twice a week since she was 5 (she is now 14). She has rarely grown pseudomonas and her swimming keeps her fit.
I am sure of all the sports she partakes in the swimming is the most beneficial.She swims solidly for one hour without a break and can beat me easily. (even though I am a fairly good swimmer).
Maggie

amelias mum

Posts: 44
From: London
Registered: 29-Nov-2006

Re: getting out and about
Posted: 05-Dec-2006 21:02

Reply

id really like to know where we can get pseudo kits for pools.. ive avoided taking A there despite lots of swimming pants been bought as im dreading pseudo again

madmags

Posts: 79
Registered: 05-Nov-2006

Re: getting out and about
Posted: 05-Dec-2006 21:24

Reply

Even if you buy a kit how can you guarantee it will detect pseudomonas? It could be anywhere and is more likely to be lurking in corners than actually in the pool. Maggie

sazg

Posts: 48
From: Rotherham
Registered: 05-Nov-2006

Re: getting out and about
Posted: 05-Dec-2006 21:58

Reply

I am Sarah mum to Leah aged 15 months i have been taking her to a mother and toddler for 3 weeks now she has picked up a very nasty cold from there but i am still taking her! We try and take her swimming as often as we can and she loves it. I wanted to cut down the chances of Leah getting any bugs, but have come to the conclusion the sooner she gets them the sooner her imune system can stand up to them better.

Just bite the bullet and do it thats what i did and dont regret doing it at all.

Take care
Sarah
xxxx

softie

Posts: 1,070
From: Croydon, Surrey
Registered: 07-Feb-2004

Re: getting out and about
Posted: 06-Dec-2006 01:52

Reply

There isn't a kit for detecting pseudo. There ARE kits for testing the chlorine levels, and one would want to avoid any pool that failed that test - but remember there are many ways of sterilising pools, including using UV light, ionisation, bromine and silver; all of which would fail the chlorine test even if they were perfectly sterilised.

Richard.