Talk

Flip

Here are some suggested organisations that offer expert advice on special needs.

SN children

New Cystic Fibrosis therapy!!!

7 replies

Janh · 19/01/2006 09:46

From BBC news

Good, eh?

OP posts:

Report

SleepyJess · 20/01/2006 18:58

Oooh just seen this.. thanks Jan

Report

yoyo · 20/01/2006 19:09

Excellent news!

Report

roisin · 20/01/2006 19:17

My nephew is being tested for CF atm
I think it's just to exclude it as a possibility.
(He gets very bunged up with mucus, has had endless respiratory infections, and keeps getting rushed to hospital, and sometimes stops breathing)
He's 15 months btw. When is CF usually diagnosed?

(His growth is fine, in fact he's quite chubby. Which are not things I would associate with CF)

Report

SleepyJess · 21/01/2006 18:13

Roisin CF is getting picked up earlier and earlier as it is now being incorporated into the heelpreek tests that newborns have in many areas (with a view to this being all areas of the UK asap.) The sooner the diagnosis the better. Many children with CF will have aborbtion problems from the word go and therefore fail to thrive which is a sign of CF.. (although probably the LEAST likely reason for a baby failing to thrive!) This is due to pancreatic insufficency.

Some will have some degree of pancreatic function however and least initially and will gain weight/grow normally for a while therefore masking the issue until other symtpoms of CF start to show up, ie respiratory.

Good luck I hope your nephews tests are clear.

SJ x

Report

Meanoldmummy · 21/01/2006 18:54

My DS2 was tested for CF when he was aout 2 months. It was a very balck and frightening time. I spent most of my time tasting his skin to see if it was salty, and trawling the internet for info. He had respiratory symptoms and was literally wasting away despite being breastfed constantly. He was projectile vomiting too. It turned out to be Respiratory Synctial Virus which he had picked up in the hospital. Apparently RSV causes 100,000 babies a year to be hospitalised in the UK. Roisin, I do hope your nephew gets the all clear. There are lots of things less sinister than CF that could be causing his symptoms - we were told that the test for CF is done fairly freely in infants with any respiratory symptoms because it's a simple non-invasive test and CF sufferers benefit hugely from being picked up early.