floppy larynx??

[superparty]

Hi
Have DD 12wks old (baby no7) and at birth had low temp. Was kept for 3 days on heated mattress and once temp stablised was allowed home. Over next few weeks was not gaining weight, quite sickly and chokey.temp has never been higher than 36.6. And I felt she was blue tinged around the nose and mouth when feeding. Have told everyone who will listen but have seen 3 gps (for other things but gave full history) hv sent us to gp who sent us to hospital and after sitting for six hours was sent home with gaviscon and reflux?? She looks healthy and well and started gaining weight everyone said dont worry. The main issue though is as she starts waking up she makes noises like a pig and coughs and chokes. And she is sweaty and chokes when feeding (although not every feed). She was just waking up at her 8wk checkup and gp saw and heard it and said had she been diagnosed with a floppy larynx when we took her to the hospital. No I said, they seemed unconcerned and gave her medicine for reflux. Having read up on it it seems they grow out of it but it is very scary to listen to and I'm frightened I'm not doing enough. She sleep contentedly all night it's only on waking. Sorry for the long post any ideas.

They can and often do grow out of it, and it's very common to have reflux meds with it to protect the airway (windpipe) as the acid from the reflux can cause damage. The only way to truly determine it or reassure you is to get an ENT referral, although treatment wise they probably wouldn't do anything different unless it was incredibly severe or had connecting problems.

I would personally push for a referral, I think a mother's instinct is normally a powerful thing. My DC3 was never quite 'right' from day -similar to how you described , and over the months we limped through various diagnosies-'happy wheezer' etc etc. It took until my child was 7 months for a major London children's hospital to find out about the significant hole in the heart, aorta on the wrong side and an artery wrapped around and compressing the bronchus.
I am by no means suggesting that your baby has the significant problems that mine had, more that I always knew there was something wrong and it took a lot of pushing and referrals to find the correct answers. GPs are used to the ordinary, and I think that they rarely look for the extraordinary. The local hospital, although kind and personable were also clueless medically.