My nephew is 7 and has portal vein thrombosis, portal vein hypertension, and Oesophageal varicies.
Dsil has had a lot of conflicting advice from his consultant (we are North East and consultant nearest to us is Leeds). She is on a few groups on Facebook etc with parents who have children with these conditions and they have all been given specific advice around treatment, ability to fly with medical letters etc, however when she has discussed these treatment options with dnephews consultant, they seem to know little about them and/or are unwilling to discuss them.
I’ve suggested she messages the page for other consultant details to see if they would see dnephew on an individual or private basis, but thought I’d try my luck posting on here to see if there’s anyone out there I can pester with a few questions!