Tracheomalacia

[Jolob84]

Our son was diagnosed with Tracheomalacia at 2 weeks old. We were told it’s a bit of a waiting game and he will hopefully grow out of it in 6-12 months time, if not surgery will be required. This was in addition to having surgery at 2 days old as his food & wind pipe were connected.
He is now 6 months old and just starting his weaning journey. He is doing well considering but we’ve had 2 admissions to A&e over the last 4 months with croup.
just wondering if anyone’s little one has the same condition, how are they, and if and when they grew out of it?

Hi. 2 of mine were born with Tracheomalacia, 1 also had laryngomalacia.
Dc with “just” TM was closely monitored, he also struggled with croup until he was around a year old and we were advised to get a humidifier for his room during the winter months.
He outgrew the TM by the age of 2.

The DC with both had regular reviews, camera down every 4 weeks etc then had surgery at 6 and 10 months for the LM, struggled with weaning and needed thicker food stuffs and liquids, but the TM was deemed to be self resolving and I would say was resolved around 18 months.

I have a teenage dd with tracheobroncho malasia and bronchomalasia.
From 0-10 we were back and forwards to hospital/gp (not diagnosed till 2/fobbed off as a neurotic mother). At about 2 years old she was put on oral antibiotics long term (till about 9 years old). At 3 she had a picc line in for a while and regular IV antibiotics (this didn't stop her doing anything except swimming). By 8 she really started to improve. You honestly wouldn't know now. The only difference is if she has a chest infection shes given a longer dose of antibiotics. It was worrying at times and I noticed that she was ill more than her siblings when starting nursery/school etc. The blue lip look has totally disappeared and she was fully discharged from respiratory clinic aged 13.
Have you got a respiratory nurse specialist linked to the consultant, they are usually good contacts to get advice. I'd say dont worry about the amount of antibiotics they need its better than the alternative. The only side effect dd seems to have is weaker teeth (which is better than weaker lungs!)
I also was careful about taking dd around too many people in the winter (consultant advice) and was very adamant people didn't see us if they were ill. Some thought I was being overprotective but they weren't the ones dealing with an ill child, plus 2 others on their own. I'd say do whats best for you and dc.

We have been referred to a respiratory team but not seen them yet. I’ve been told they may be able to give us a bit of a plan to help with the respiratory infections and hopefully prescribe steroids so any sign of a cold then we can get ahead of it but will see what they say when we meet with them.

We are currently seeing ENT every 2 months.

We have told family/friends to treat this like Covid rules and not come anywhere near us with any cold symptoms, but it’s also hard when we have a daughter at school.

@Jolob84 with both my DC, respiratory team wrote to their GPs and recommended a steroid and antibiotics prescription for any time they had coughs. Their overall plan was to limit contact with anyone with a cold etc, which you’re already doing, but we have other DC at school so not so easy!

I used to limit walks etc on cold and damp
days too as I felt that made DC have to work harder. And no soft play for any of the DC because they’re germ fests.