We met with Hannah’s new neurologist today. Our choices for pediatric neurologists here in town is incredibly limited, but we felt we had to get a second opinion because I did not feel Hannah’s neuro was being proactive enough for her. This one was on our side of town, which was a definite plus.
Things did not start off too well because we had to wait over an hour in the waiting room before we were brought back into an exam room. Then it was another 20-minute wait in the room. Despite this, Hannah did better than I expected she would. Well, with the exception of one throwing-up-of-mucous event. I didn’t like the shirt I was wearing anyway.
When the neuro finally came in, she sat down and looked at my Hannah cheat-sheet (I have a one-page sheet that summarizes her medical history, meds, etc). She made the comment “Wow, this is only the second case I have ever seen of this disease!” Of course, I am shocked that she has ever seen one before because none of Hannah’s non-NIH specialists ever has. Apparently she had a type 2 case 20 years ago.
She was surprised that our previous neuro here has not done any post hospitalization testing or real changes in meds outside of adding the haldol. I could tell that she did not want to bad-talk to the other neuro, so she made the comment that this ‘testing’ needs to be a priority before we start changing meds around.
What was unique about this exam was that instead of an exam table, they had a full-size bed in the room. This was a room they used for sleep studies so it was decorated like a bedroom. It was a GREAT way to exam Hannah because she barely fought the neuro’s physical examination of her because she was so comfy.
I really like this new neuro. Very proactive, which is what I was hoping for. Also having her just 10 minutes away is a huge bonus (instead of the 30 minutes).
We have an EEG scheduled next month. She wants me to help her gather all her NIH, TCH, and other neuro-related paperwork together before our next appointment next month. Her insistance on “studying up” on Hannah before changing around meds and stuff really gives me a lot of comfort as well.
Sounds like you may have found the right doctor!
That is great that you found a doc you like. Sometimes it takes getting a second opinion to find one. We did that with my oldest son’s cardiologist. Noah has an EEG today and we are waiting to be picked up in the exam room now. He keeps trying to close his eyes! Poor kid! I am sure he’ll crash at home. Hope. This new doc puts you on a better path with Hannahand maybe gets her off some meds.
That sounds wonderful! Well, except for the long wait part of it!
(Kinda sad that we have to get all excited when doctors do their job and actually review a patient’s history instead of shooting from the hip. 😛 Me? Bitter? Nah!)
Great news!!
Doesn’t it just make your heart soar to think that there is a doctor willing to be proactive?
Yea!