Sunday, July 31, 2011

Neurology Update

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.


Christie said...

Oh the joys of neurology appointments! (note the sarcasm) We finally found a neurologist we loved just before we found out we were moving from Memphis and had to start all over here. :/ We never found a neurologist we loved here. I could make a list of shocking things that have been said to us by neurologists. I love when your child is having a bad day and they are eyeing them while not believing what you're saying. Love that. I have SO been there.

And appointment scheduling...We have this doctor who has a waiting list of about a year that Ethan sees. We have been seeing him for years. (Developmental Pediatrician...worth the wait!) One time we came in for the long awaited appointment. I had hired a babysitter to come with me. So I was paying her to sit with the other three boys while I went in with Ethan for the appointment. There's a fun waiting area so I thought it would work well. So I go up to check him in and they tell me that the appt that I'd confirmed the week before had been cancelled by ME the night before. What??? I explained that there must be some mistake. I live about an hour away. I definitely called the week before to confirm. These usually nice people turned some kind of invisible switch and explained to me that *I* or someone at my house cancelled the appt when the 24 hour reminder call was made. You have to push a button to confirm. Maybe one of the kids pushed the wrong button. I explained that the number was my cell number and my kids don't use my phone. I asked them to check again. I said I don't want to be insistent here, but I've just driven an hour, am paying a babysitter and I am sure that I called last week to confirm the appt. They said they saw where I called to confirm, but they thought they were going to have to go with the 24 hour cancellation. They asked me to be seated while they deliberated. They would let me know if the doctor could work me in. They thought the answer would be no, but they would look. They gave me a mini lecture about correctly confirming my appts while my teen babysitter sat watching. It was crazy. SO they came back and begrudgingly told me that we could have an appt. I went back to the exam room with Ethan and the nurse and the doctor both acted as if we were responsible for wrecking their schedules. The doctor gave me another mini lecture about the importance of confirming appts and filling out the appropriate paperwork and having my number listed correctly on their paperwork. I assured him that I had my number listed correctly and felt that my intelligence was greatly being insulted. I made it through the appointment and in the hallway someone from the appointment office came out from behind the glass to apologize to me. She let me know they had found the error. They recently upgraded to a new computer system that threw them back to old information. We had been with the office so long and the computer had pulled up our number from several years ago, so they had called a number that doesn't belong to us and some stranger cancelled our appointment!!!!! She apologized profusely and I was nice about it, but before I left I asked her to please explain what happened to the check-in person and the doctor because I had endured a couple of lectures on basic responsibility for NO REASON!!!! :) Pure craziness! I may have told you this story before. I still go to this office and they are all very nice and kind as they were before the incident. It's all water under the bridge, but it makes me frustrated still when I think about it! :)

Stephanie said...

Wow! Nothing makes me more aggravated than for a doctor to act like I don't know what's going on with my own child! Like when Ben was at Hasbro when he was 3 for pooping blood and no one would believe me that it wasn't from being constipated until his colonoscopy showed he had a polyp. Still raises my blood pressure when I think about it. I can only imagine how frustrated you were/are by this guy!