New diagnosis, new medicines, new hope

For those of you who aren't connected to me on Facebook, I have some catching up for you to do.

At 3:00 am on New Year's Day, R. woke up and was having the same type of bizarre psychotic looking behavior that she had been struggling with all month. In an effort to both be believed and to document, we made the call to take her into the ER again. No one was excited by this. Thankfully the ER was pretty empty and we were in triage within minutes. 

Having just been in two days before, the ER doctor was not content to just give us Ativan and send us on our merry way. She asked permission to consult with the neurologist on call and we agreed. I believe this simple phone call might have been the catalyst for some major revelations. The neurologist was concerned enough at the description of what was happening to suggest being transported to the bigger area hospital and be admitted for a 24-hour EEG. Being all out of options we agreed. We decided that I would go and J. would head home. So, not for the first time in my life, I rode in an ambulance taking my child to the hospital. No sirens this time, though. 

This stay accomplished a great deal and was totally worth the lost sleep. A whole host of nurses and doctors got to see R. at her most distressed.  A couple of times a nurse would look at me and ask, "Do you want idea why she's doing this?" I wasn't sure whether to laugh or cry at their surprise when I said this was precisely why we were in the PICU because we had no idea. I'm pretty sure I was speaking English all those times I was describing what was going on. Sigh. 

By far the best outcome was meeting the neurologist who recommended the EEG. I've seen a lot of doctors in a lot of hospitals over the past couple of decades so I am well aware of the norm which is probably why I am still so gob smacked at my first encounter with this new specialist. If you're a medical professional, read along to find out how to win your patient's heart forever. 

The doctor enters the room after we're checked in and settled. He introduces himself, looks around for a chair, brings it over to where I am, sits down and gets settled, looks at me and says, "So tell me all about what has been going on." And I did. I started at the very beginning and talked and talked until I got to the present. Unlike everyone else I have talked to recently he didn't interrupt me saying he didn't want to hear past history or that he wanted the short version. He listened, making eye contact; just listened. You have no idea what a gift this single, simple act this was. He then asked intelligent questions which showed he really had been listening and not making a good show. Finally, without saying so, I knew he had actually read R.'s medical history before he even entered the room by the questions he asked. Do you have any idea how completely and totally rare this is? Do you know how much grief I have taken from doctors over the years by suggesting that reading my child's extensive file could be helpful? Do you know how badly I wanted to burst into tears at this poor man just because he was considerate and compassionate? And we're not even to the really good part yet. He is pretty sure, from his experience, our description, and the EEG results that he knows what's going on. 

Seven years into this we might actually have some real answers and some real help. I am guardedly hopeful. We've had too many disappointments to let our guard down immediately, but if this diagnosis is correct... Well it will be life changing for everyone. 

And last but not least, he also understands that R. (and her family) need support while we work on getting the right balance of meds, thus we now have a prescription for the medication that I have been arguing with other doctors for all month long. We might all just survive this. 

I have decided that I'm going to take January as lightly as I can. We'll start school again in a few days, but that will be about it. I think we need to create space for the medication titration period, but we also need so my e time to recover from a pretty challenging and horrendous month. It was hard on everyone and the other children in the house definitely got short shrift. 

So that's where we are. While going to the ER as our very first activity of the new year seemed like a fairly ominous start, it could be the absolutely very best thing we have ever done.

And yes, I'm fairly sleep deprived at this point and feeling a little more emotional than usual.