I had significant reflux as a child and I noticed in my mid-twenties it recurred. I have since thought that it was due to my heart deteriorating and my body becoming much more tired because prior to my last surgery I was vomiting every day, with a lot of acid. Post-surgery it completely disappeared but now I’ve noticed a slight recurrence. Is it common for people with Noonan Syndrome to have recurrence of thing like reflux as their bodies become tired and there’s deterioration in the heart?
Certainly, reflux is common in children with heart conditions. I don’t know whether it’s linked to a deterioration in the cardiac condition or not. I haven’t come across it in later life but the logical inference is about tone in the muscles. Children with all sorts of other complex disorders and very frequently children who can manage feeds when they’re at their best, when they become unwell struggle. Their safety of swallow can be reduced and it’s just linked to the fact that because of their hypotonia these other factors, whatever it is, can set them back a little. We do have children who we occasionally make them ‘nil-by-mouth’ because they become unsafe for periods of time. It sounds as if that may be echoed in what you’re saying so when you’re being combated by other issues whether it’s as simple as coughs or colds, or a major issue such as another organ system, that may have a knock on effect on a system that was holding its own up to a threshold, but actually its being breached and bashed a little bit more than usual. The other thing in general terms is that for a new onset of symptoms you go back to thinking about things in terms of the general population and what we would advise anybody in this room when there is a new onset of symptoms is to seek their GP’s advice if they are worried about it.
Question asked and answered at our family’s day 2018