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Does anyone have a child with Primary Pulmonary Hypertension? - primary pulmonary hypertension more condition_symptoms

My 5 years was diagnosed with primary pulmonary hypertension, heart OPS has two to 15 days to 15 months back, but it is not bound.

He also works high autism.

It is currently home oxygen and diretics and bosentan ... We have the syringe in his mouth .. every day and often spits and he understands the gravity of what he was doing.

I have problems with it and just want to talk with people in the same situation.

Thank you in advance.

xxx