My son was diagnosed at 8 years old and immediately placed on IV Flolan. He learned quickly the importance of making sure no-one every turned the pump off, even medical staff who might not be family with Flolan. At a young age he knew a lot about PH and how to explain his condition, limitations and needs to others. He learned how to speak up during appointments and how to explain symptoms and concerns.
How old is your child and how are they handling self-advocacy? Do you have any tips for other parents on how to encourage your child to advocate for themselves?
Colleen, your son was quite the advocate at such a young age. I am sure with the young kids going to school and events, this is a must. He is a lucky guy to have you. Was it difficult to teach this information at his age? I know even for us adult PH patients, often some are not as educated or self-advocating.
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