Emmett John saw his Gastroenterologist yesterday and he now has an endoscopy scheduled for the 9th of September. We did not think that was going to happen. We thought they would toy with is reflux meds. The doc also went a step further and pulled EJ off his reflux meds which means he will be screaming all night.
The sleepless nights began last night and it was a bad one. EJ is in so much pain when off the meds that Lizze and I are going to keep him on them and get a second opinion. This doc had a God complex and didn’t really listen to us at all. Skipping everything else and going to something rather invasive doesn’t sit well with us. We are going with our gut on this one and getting a second opinion.
EJ was also evaluated by PT yesterday as well. They said that he has major sensory issues. They also told us that when he hits ER that it’s the equivalent of the “fight or flight” response. He can’t be punished for a knee jerk reaction. That really sucks because ER really takes a lot of abuse from him. I think EJ needs corrected when he hits ER regardless of motives but what do I know.
I have two different autistic sons – one is similar to yours and the other is low-functioning and does not talk. Stories about them are in my Best of Year book, Seasons of the Soul. Book keeps your spirit up and message is to appreciate the small things in life normally taken for granted. Believe me you know what works best for your children. I have been through that and still deal with that. Follow me on Facebook Janet Nitsick or Twitter JanNitsick.
I don't blame you for the second opinion, and wouldn't blame you if you got one for the EJ situation too – WE are our children's best, and sometimes only advocates. We know our kids much better than anyone else. Trust your gut on this Rob! YOU and Lizzie know what will work and what won't with your kids. Hang in there – you guys are in my thoughts!