Treading in the Dark

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Since Faith was diagnosed when I was pregnant, we have been guessing what life will be like for her. Guessing at each stage in her development how the hh will actually affect her development. Guessing how the seizures will develop/or not. Constantly, thinking should we look at more surgery. Sadly it is not only us that is guessing but also every professional that she meets. Each consultation we go to, we have been met with: 'it's so rare, she's the first we have come across, blank faces, such a complete lack of understanding that a professional told me 'its a dead piece of skin,  and the most my baby will suffer from is precocious puberty'.  Then this week I was actually told by a psychologist that she didn't feel knowledgeable enough to help me deal with Faith's behaviour, and she has discharged us. So we are left to carry on guessing, by ourselves. I have a psychiatrist who is going to review in line as to what if any medication we can try.  We are desperately guessing as the best way to handle her moods, learning what sparks them off. We are treading in the dark.