Warning: what follows is a rant...
Things were a bit rough around here this past weekend. Emily was very lethargic on her new meds. And when she wasn't lethargic, she was cranky and had crying fits that would last an hour. We have all be on edge. Mike and I aren't really sure what will set her off. So that makes us concerned, worried and a little frustrated.
Called the neurologist to make an appointment for next week. They have nothing available until November 6 and we will be meeting with the nurse practitioner, not the doctor. We met her last time and we were there for hours. She had to keep going out to ask the doctor questions over and over. Frustrating!
Asked the neurologist's office for a call back from the doctor to ask about Emily's reaction to her new meds. When they called back we didn't talk to a doctor, but someone else and were told that she should not get the meds on an empty stomach. Gave the message to Mike and he said she had been getting them after eating by mouth. So I called back to let them know this and was told to give it to her on an empty stomach and if things weren't better in a week then we should call back. Frustrating!
Called our pediatrician to see if she could refer us to a different neurologist. Nope, the group that we go to is the only pediatric neurology group around (unless we want to go to Cincinnati 2 hours away - which we are thinking about at this point). Frustrating!
One of our therapists wondered if hippotherapy might have caused the seizures. She is not the only one to mention this, actually. So we saw a glimmer of hope that maybe it would be a simple solution - stop taking hippotherapy and the seizures will stop and Emily could come off the new meds.
Talked to the PT that does hippotherapy and she could not say either way. She had not seen this happen in other patients and many of them have a history of seizures. She thinks it is just a coincidence that the seizures happened the day after Emily's first hippotherapy appointment. She said to ask our neurologist what they think. That is a great idea, if only we could talk to them!
I have spent the better part of 2 days making phone calls, doing research, trying to get some answers and help and in the end, I am FRUSTRATED!
Right now, we are waiting until we can meet with the nurse practitioner of our neurology group so we can bombard her with questions (so she can go ask the doctor). We will not be doing hippotherapy until we can talk to neurology about it. We will continue on the meds (Emily has been a little bit more like her self today and yesterday). She will need to have blood work done this week to check the med levels and to make sure this new med isn't wreaking havoc on her liver. We are considering going to Cincinnati for Emily's neurology, but haven't decided yet. We aren't really sure what therapy to do in the meantime (Emily did not react well when Mike took her to OT on Friday).
So to sum up, we have a lot of questions, not a lot of answers and did I mention that we are...you guessed it, frustrated!
I know that God is in control. None of this is a surprise to Him. He is the same God yesterday, today and tomorrow. I know that He will give us the wisdom to make the right choices for Emily. I know that He is with us through this trial. I know these things without a doubt. I just have to keep reminding myself of these truths when the stress level climbs. We would really appreciate your prayers at this time.