Hey K.,
I am so sorry for all you and your little man have been through. My only advice is that you seek the guidance of a pediatric neurologist asap. I would ask my pediatrician/primary care physician for a referral immediately. And if asking nicely doesn't result in the referral, then I would politely strong arm them into the referral. If they say you are over worried, 1st time mom, or another episode needs to happen.... I would just reply... "I am only going to ask once more for the much needed referral, otherwise I would like in writing your refusal for the requested referral." Then you can decide to for go an appt without one or speak the neurologist and see if they can waive the referral if you presubmit his ER records. Also seek another doctor for referral... but I doubt you will need to do any of that, as most doctors give referrals for what is not their area of expertise, and I have not met one who would write a letter declining a referral. I hope you get him seen by the correct doctor soon. And I hope his diagnosis is mild and need for treatment little to none.
God Bless,
-MB