Get Grady an online second opinion

Grady has been diagnosed with a rare syndrome. It occurs in less than .6% of conditions of its kind. So in the general population it is even less.  It is called electrical status elipticus in sleep. It means his brain never gets time to rest. He could lose his ability to understand language and stop speaking. He could also slowly lose all his cognitive skills. His IQ can drop. He could revert permanently to the skills of a toddler. Our neurologist has no experience with this and wants to treat it in all the wrong ways. We are trying to get a specialist from Boston Childrens Hospital to get am online opinion. It will cost us 675 and is not covered by insurance. My husband had to take off work for unexpected testing so we have no moneu to spare.