Reintroduction

[Wooders80]

Hi,

Don't really post much, so thought I would put a reintroduction here too as I have just posted a question on the boards. I have 3 year old, Dominic, who has had a trachy since he was 6 weeks old. He was born full term, and got into breathing diffuclties at 6 weeks due to a birthmark in his airway and one on the outside compressing his airway. The birthmark (haemangioma) is slowly regressing, but his last MLB still showed a narrowing in the subglottic region. Plan now is that if things don't look much at his next review (June 2009) to start considering a single stage LTR.

He's had his trachy so long now, it's just a normal part of our life. He's also started nursery recently, and seems to be thriving and slowly starting to speak.

[alizesmom]

Welcome back. Karen

[JWorthington]

Hi Laura, I know you from ACT, but this board gets a lot more traffic, so I come here too.

Julie x

[slgtweety]

Sounds very similar to Lexi's issue. She had trouble breathing at 6 wks and they found a hemangioma blocking 99% of her trachea. We've been doing laser surgeries about once a month since right before Christmas. Are they going to try and remove his all at once? Just curious - what was his % occlusion, etc.?

[Wooders80]

Dominic's subglottic haemangioma isn't suitable for lasering as it is deep i.e. below the trachea tissue, rather than on top of it. Infact, for quite a while the doctors thought the reason Dominic needed a trachy was as his haemangioma in his beard area was compressing his airway. It's also likely that when he was intubated as a baby his airway was damaged too. The plan now then is to considering excising it and perform an LTP at the same time if things don't look any better in June. I think excising and LTP are another alternative to lasering.

Not too sure on the percentage occlusion, never been told - but the last pics I have from his last bronch his airway in the subglottic region looks like a key hole. It used to be worse, almost completely shut, so things are getting better.

As your little one is still young, has anyone mentioned propanol? It's quite a new treatment, a lot less risky than steroids I'm led to believe and is getting really good results. (have a look at this link - http://content.nejm.org/cgi/content/full/358/24/2649) I'm waiting for a decision for Great Ormond Street on it for us - bit more difficult as Dominic's haemangioma is now regressing.