I’m looking for a specialist, or others who are familiar with a range of conditions

[merryandbrightdelight]

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!

Sorry I am not an expert on these conditions, actually I have never heard of one.

Are members of the group in the USA?

Often people in the USA take a brand name of a treatment where as we in the UK use generic terms so eg if you have a headache you might take Tylenol or acetaminophen but have never heard of paracetamol.

Also with any medical condition a doctor is going to treat the patient not the condition if you see what I mean.

Also what questions a patient asks and the answers can be different. Eg my mother asked her diabetic specialist if she was OK to drive and they said yes. What my mother had not told him was that she had cataracts and couldn't see very well at all.

So, if you have managed all that, well done. A Dr not knowing a treatment regime another Dr uses doesn't mean they do not know what they are doing.

@sashhthank you for this! I never thought about some of the others in the group being in America but I imagine that they are as it’s a Facebook group, I will check this out with her. Thank you for your reply