Hello and welcome to Ask A Doctor. I have read your query and here is my advice.
Septo-Optic Dysplasia involves under development of the eyes and parts of the brain. One part of the brain that is effected controls the working of the adrenal and thyroid glands. So when this part(pituitary
gland)is not functioning properly, it causes the adrenal and thyroid glands to not function.
Life expectancy varies according to the presence and severity of symptoms. (Each person with Septic-Optic Dysplasia does not have the same symptoms.)
Treatment with medications for deficiencies of chemicals normally produced by adrenal and thyroid glands allows for a better outcome.
For the best care he will need help from many specialists:
-eye doctor
-endocrinologist(gland doctor)
-pediatrician

These specialists can direct you to others ,as needed.
As you can sense, for his optimal care he will need care provided from a number of sources. You might find it simpler to find all of these specialists at a university medical school.
You and your wife should be commended for what you are doing. Both of you have taken this unfortunate youngster who had been placed in an institution with no care for his condition and brought him into a concerned, loving home.
No one is saying this is an easy thing to do; however you are seeing to it that he receives the best possible care. There are not many who would do what you and your wife are doing.
God bless you.

Hope I have answered your query. If you have any further questions, I will be happy to help.
Arnold Zedd, MD, FAAP




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