July was a busy month. We had follow-up visits with quite a few doctors. Rather than write one gigantic post, I am going to do a post for each appointment. Not very exciting, but it will help me to keep things straight and (hopefully) not overwhelm you with boredom all at once.
Neurology was our first appointment this month. Just trying to set this appointment was completely nuts!
We first saw Dr. D in January. We had a follow up scheduled in July. That appointment was cancelled and moved to August. Then that appointment was canceled. Before I could reschedule, I found out that Dr. D was leaving Children's. So I scheduled an appointment with Dr. H. I have heard great things about her so I was looking forward to meeting her. The morning of the appointment, Dr. H's secretary called to say it was canceled. She said that Dr. H was only taking new patients with metabolic disorders and we should not have been scheduled in the first place. Then I scheduled an appointment with Dr. T, but I wasn't thrilled with that idea. I knew nothing about him and was able to schedule an appointment very quickly. It may sound funny, but I could not help but wonder if he was terrible and that was why I was able to get in so quickly. Another mom raved to me about Dr. S, so I tried to schedule an appointment with him instead. I was told that he was only seeing patients with behavioral issues. He would see general patients at a location that (I was told) was 2 hours away. *sigh* So I figured I would stick with Dr. T and see how it went.
Of course, we talked with the nurse first. I told her what had been happening with Emily, when she had seizures, when her meds were increased and asked a few questions. I let her know that I was concerned about the seizures continuing even after we have increased meds and wondered if Keppra had lost its effectiveness. When the doctor came in, he asked me a bunch of questions and just watched Emily while we talked. The look on his face was kind of odd. He almost seemed like he was afraid of Emily. The whole time he was in the office, Emily didn't pay much attention to him. She was really tired after therapy. She struggles to give people eye contact on a good day, but when she is tired, she is even less likely to do it. So I guess he didn't really know what to make of her behavior.
We talked about the seizures and the conversation went something like this:
Me: She blinks her eyes very rapidly, does not respond to her name, sometimes stiffens her arms, and sometimes drools profusely. They usually last about a minute. The longest one lasted 3 minutes.
Dr. T: So how do you know it is a seizure?
Me: The main reason I think it is a seizure is because she does not respond to us at all.
Dr T: What does she normally do? (as he looks at her just sitting there looking completely bored)
Me: She normally responds when we say Emily. (Emily looked right at me and smiled - thus demonstrating for the doctor)
The bottom line was that he was not convinced that these episodes are seizures. His response was "her brain is abnormal, she is going to do abnormal things". I resisted to urge to say "well thanks for telling me something I didn't already know!". When I told other moms that he made that comment, they were outraged that he would be so callous and blunt by saying her brain is abnormal rather than being more "politically correct" about it. I wasn't insulted by the statement - I was more annoyed because I felt like he was trivializing the situation. I felt like he was telling me I was just being a paranoid mom. Obviously, Dr. D never thought so and that was why he increased Emily's Keppra when I let him know what was going on.
We talked about what to do next. He said there were a couple of explanations.
1 - The episodes were not seizures and we have increased her meds for nothing.
2 - The episodes are seizures and the meds are no longer effective. So we should increase her Keppra more and if that doesn't do the trick, we can try other meds.
I asked if there was any harm in doing nothing even if they are seizures. They are occurring on average about once a month and lasting about a minute at a time. Emily tends to get cranky before but is perfectly fine afterwards. He said as long as she was not hurting herself, and her heart rate and breathing were not affected then there would not be an issue with doing nothing. Of course, if they happen more often or start to last longer, then we would have to adjust her meds.
We also talked about a seizure protocol for school. They always want to know how to handle seizures if they happen. He gave us a prescription for Diastat. It is an emergency medication used for seizures that last longer than 5 minutes. Emily has never had one, but that doesn't mean she never will. So it is better to be prepared.
I left the appointment feeling good about the decision we made to not change her meds. I also left knowing that I would not be seeing that doctor again. I will be calling to schedule an appointment with Dr. S. He will see general neurology patients at a campus that is just an hour away (not 2 hours as the operator told me). We only go twice a year and I am willing to drive an hour for a good doctor.