oxygen dependent child

[Lil]

anyone got experience of this. Feeling like the only one in the UK

I don't but I did know someone whose son was oxygen dependent for something like the first 2 years (certainly over a year). He was very premature, is there a prematurity list or something where you may be able to find someone?

Also I know there are people on here whose children have been oxygen dependent when small, so keep bumping and someone will come along with experience.

thanks
dd is 5yrs now with no signs of growing out of it yet..

My daughter was oxygen dependent for her first 13 months.

She is now 3.5 so it was a while ago but I am here if you want to chat

Hi Lil,
we were all kitted out for ds2 to come home on oxygen but he was taken off the day before discharge after spending his first couple of months hooked up.
Sorry no real experience, just wanted to say hello & hope someone else comes along to share their experience.
Was your dd premature? Hope you don't mind me asking.
Max

I have no first hand experience, although a friends dd was on oxygen full time until recently when she underwent a lung transplant.

I can only speak from this distant perspective, her dd is a lovely sunny child who enjoys so many areas of life - she even came and rode my dds pony last year - although she (pony) rolled her eyes at the oxygen cylinders!

I'm sorry you feel isolated, does you dds condition not have a support group?

lol on a pony with Oxygen cylinders!

dd wasn't premature, but very similar symptoms - however she is failing to grow out of it andis deemed to have a very rare lung condition which mens lots of hospital appointments but no answer. I'd love to find a support group but as it is so rare there just aren't any. Alycat do you know what was wrong with your friends dd?
Other than cystic fibrosis I just can't think of a support group that might help.

Are there any CF mums out there who know if the cf groups might help??

lil - I used to post here. There are some mums whose children aren't babies anymore and I'm sure there were a couple of oxygen dependent children there. Maybe worth a try?

Sorry that you're feeling isolated.