We were just visited by the Acute pain team at Children's hospital a few moments ago. We were lucky enough to get a place with a physician who will help integrate narcotic pain therapy with meditation and tools to help Solstice survive this very painful disease.
You see, what happens with HAE is the proteins don't make the right stuff, so the liquid that is suppose to be in her veins, get stuck in certain tissues. One main area for Solstice is her tummy. Her stomach intestines and tissues are so filled with fluid that at times she looks 9 months pregnant. This is extremely painful, and we don't want to treat everything with narcotics.. obviously the goal is to manage the pain without creating a fourteen year old junkie.
As a mother, watching her writh in pain is too much to bare.... far worse than having it yourself.
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