Thank you so much for your prayers! After a long day today, we think we may have some answers with good news. Not without some frustration, but all in all I think Little J will be back to his sweet little self soon.
After our visit to the ER last night, we were told that the neurology department would contact us for follow-up. I knew they opened at 8:30 in the morning, so I got up to get a jump start and called them. I spoke to a nurse and she told me that Little J's regular doctor was on vacation, so they would talk to one of the other doctors and call us back. By 12 noon, we still hadn't heard anything and Little J had a couple more of his gagging episodes, so I called and left a message. By 2pm, poor Little J had not been able to sleep without waking up gagging. So, I called our regular pediatrician and they got him in. After she examined him and observed his behavior a little, she believes that he has acid reflux and that the some of his behavior is more related to his being so tired and not necessarily seizure activity. She still wants him to see his regular neurologist for an EEG and check, but we're hoping that this new prescription will help.
In the meantime, she called the neurology department to try and light a fire under them to get him an appointment. They told her that they were going to start him on some seizure medication without even seeing him! She tried to tell the nurse, that she wasn't sure that his behavior was actually in need of seizure medication, but that he should be seen and assesed before a decision was made. Well, they called and left a message for us that they want to start this medication.
I plan on calling them tomorrow and letting them know that I am not giving my kiddo this medication, when they have not even seen him! The doctor trying to prescribe this for him has never even met him! I am so furious right now, that I could spit nails! If they wanted to start this medication, then why didn't they just tell the ER to give it to him instead of waiting until almost 24 hours after he was seen and almost 10 hours after I called them the first time to prescribe it! I'm hoping that we can just wait until his regular neurologist is back and then go from there.
Thanks so much for all of your prayers and good wishes, they mean so much! Keep them coming! I'm going to need all the prayers I can get to really fight for what my Little J needs! Thank goodness I have a great pediatrician in support of my choice!