looking for information/help

My son, Kian, just turned 2 last month. He had his first fever seizure at 11 months old. It came out of no where and he stopped breathing during it. As I am sure other parents can imagin, it was terrifying. We had no idea about what was happening. He was rushed to the hospital where he had another one. They did an EEG and said that it was just because he had the flu and his fever spiked high very fast. Then the next month on the day after his first bday he got his shots done and had another fever seizure. Then in April 2015 he had his first one without a known cause. He has had 27 seizures since Jan 2015. At least once a month since that April. Usually more. He's had 2 in the last week. And he has stopped breathing during 85% of them. And in Dec.2015 he had one that lasted 48 minutes. He had to be airlifted to the hospital. We have been seeing Dr.Riveria at Penn State Hershey Hospital. And every single time we have seen her or anyother neurologist there we have begged for some kind of monitor or service animal or anything that would alert us to when he is having one. Because my husband and I have not slept at the same time in over a year, he doesn't show any warning and there are no triggers that are consistant, so we never know when he will have one. And because he usually stops breathing, we cannot risk it. Every time they have blown off out requests. Saying that there is not any proven data that those things work every time. They don't seen to understand that that doesn't matter to us, any kind of help would mean the world to us. It could catch the one that we miss. We have video monitors all over the house, but they don't alert to anything except a fever. His doctor didn't even tell us his diagnosis herself, though we asked many times. I found out when I got a copy of a letter that was a visit summary sent to his pediatrition in the mail. And even that was the broadest diagnosis possible. He has Idiopathic Partial Epilepsy. In Jan. 2016 I got another of these letters and it said that he was at high risk for SUDEP. I had never heard this term before and seeing what it stood for, I am sure other parents could imagin my panic and heartbreak. I called the doctor immediately and several hours later I got a very ride call back saying that though she didnt "spell it out for me" she did tell me. As I am sure other parents of children like my son can, I can recite his entire medical history immediately, I am not likely to forget her mentioning that I may loose my son. She also waited a year to send him to a heart doctor though she said that is normal procedure when a child stops breathing during their seizures. He is wearing a heart monitor now, though they do not think that is the cause. So it is because of this and the fact that though he has had many tests and we still have no answers, that I am giving this back round information. I am asking that anyone give any information, references, or advice they can. We have very little information about the type of seizures he has or anything. What I have found out was mostly online, but without more information from a doctor, I am left wit more questions. We are located in PA, if anyone knows of doctors in any of the surrounding area, or other states. Also, have any other parents with children his age had their child show signs of trama because of all the hospital visits and testing? Kian is 25 months old and isn't really talking yet, he is at the level he should of been a couple months after turning one, at the latest. All His other development is normal, but he isn't communicating like he should be. And we have been told it is likely because of the trama he has been through, Kian is absolutely terrified of hospitals, doctors, and being held down at all( because of being held still for IVs, bloodwork, tests, etc.) so I am wondering if anyone else has had a child go through this at his age?? Thank you for taking the time to read this and to respond. I sincerly appreciate any help at all for my Kian.