Advice about CF for childminder friend please!!

[serenity]

Hello,

Very quickly, my BF looks after a little boy who was born very premature (26 weeks). He's had a few problems with his breathing, he's on oxygen and has a nebuliser every few hours. The doctors have put his problems down to lung damage caused by the early birth, but this week they have discovered that he actually has CF.

Can you recommend some good resources/web sites that BF can use to bone up on the subject. She's getting some pressure from her DP and other CMs as to whether she should continue looking after him, and she needs to see how it will impact on her other mindees and her own kids. ATm she's more than happy to have him (he's a sweetie!) but needs to know more about what the future holds.

Thanks very much! s'cuse typos, but very late for school!

you could try the cystic fibrosis research trust

poor baby

She won't be able to childmind another child or even meet up with other CF children.

Also, she will probably have to give him some medicine before he eats anything & depending on how long she looks after him she may have to do physio.

HTH

May also need antibiotics or have periods in hospital, which she may need to think about with parents.

He's been in hospital a few times already (he's only 10 mths atm) mainly for tests and monitoring. He is weaned and hasn't had any problems with his food at all, I think this is why it's taken so long to dx him. They said earlier that he can't be CF as he was thriving and chubby. Can he be CF without needing enzymes etc before eating, or will it be inevitable? Ditto with the physio, he doesn't need it now, but is that usual at this age?

thanks for the replies

I would check out that website. I'm no expert - a friends son has CF. But I thought that the main thing with CF is not being able to digest fat in food and so baby doesn't thrive and needs the enzymes.

Check that website - it should have more info.

serenity, there are different subtypes of CF, and by no means all people with CF have pancreatic insufficiency, which is what starrynight is describing. Your friend's little mindee clearly doesn't, and won't therefore have any problems with digestion. I'm not sure why she wouldn't be able to mind any other children? That dosn't make sense to me- children with CF go to school and manage in classes with only one teacher. Most children need physio, but it's really a case of lots of trampolining and chest massage which would in most cases be done by the parents unless she has him for very long hours. I think it would be very sad if she had to stop minding him.

nephew has cf - he gets physio twice a day as preventative measure, not just when he is sick - it is recommended so that they get used to it as part of their daily routine

• also, regardless of your views on smacking, due to the nature of the physio my brother/SIL say that you can't hit/smack a CF child for discipline, becaue they confused this with the physio

i would definitiely be contacting a support group for info - but also, the parents should be informed as to his needs, and then training/informing the childminder as to what he requires so that she can make an informed choice about whether or not she can meet the needs of his care

Tamum, I said she wouldn't be able to childmind other children with CF - as far as I know the children can't mix with each other in case of passing infection. However, this is only in my friends' sons case and I don't know if it depends on the type of CF the child has.

Thanks for the feedback, I didn't realise there were 'degrees' to CF. I suppose the image you see on TV is of a child having the sort of physio that would get you arrest if you did it to another kid, and handfuls of pills with every meal. I think BF is worried that he will need more care than she is able to give him, she doesn't want to let him down. I know she's looked at some literature already, and got a bit upset when it was talking about life expectancies. I'll point her towards that website, thanks

they can mix with other children with CF if they both have pseudamonas or both dont have it iykwim

Think this might help...

Cystic Fibrosis is the UK's most common life-threatening, inherited disease and affects more than 7500 babies, children and young adults. Symptoms can include poor weight gain, troublesome coughs, repeated chest infections, salty sweat and abnormal stools.

Cystic Fibrosis is a genetic disease that affects a number of organs in the body especially the lungs and pancreas) by clogging them with thick, sticky mucus.

At present there is no cure for CF, but the faulty gene has been identified and doctors and scientists are working to find ways of repairing or replacing it. One of the main objectives of the CF Trust is to fund this work.

People with CF are living longer than ever before. Until the 1930s, the life expectancy of a baby with CF was only a few months. Today the average life expectancy for someone with CF is around 31 years.

www.cftrust.org.uk

Hope this helps

Love, Rebecca's Mummy

Proud Mummy to three special little people ~ Matthew, Rebecca, our angel up above and James wcf