Tuesday, April 23, 2013

Neurology and PM&R Appointment

Today was Allie's semi-annual Neurology and Physical Medicine and Rehabilitation appointment.  The following are the key topics that we covered.  (You can read about our last appointment here.)

Allie's EEG last week looked really good.  There were still abnormalities, as we expected, but her neurologist said that it was "great".  She also encouraged us to avoid the temptation to pull Allie off the meds, which she said is typically the urge once a kid is seizure free for over a year and has a good EEG.  I said that we have no strong desire to take Allie off the medication because we don't see any side effects from the Trileptal.

Allie's physiatrist observed Allie walking and he suggested that we consider Botox and a brace for her right leg (probably an SMO, which goes a bit over her ankle).  The physiatrist said that the ball of Allie's right foot touches the ground just slightly before her heel does and this is messing with her gait.  He said that this seems like Allie's tone is kicking in while she is walking even though her leg seems pretty loose when we stretch her.  Our physical therapist was very against us getting just one SMO for her foot instead of one for each foot because she said that it can exaggerate a limp.  The physiatrist asked us to connect him with our PT so that they can discuss the best approach for Allie.

I talked with Allie's neurologist privately about the botox and orthotic.  She said that she would recommend that we start with just the splint and see if it helps at all and then consider the Botox if the splint doesn't help enough.  She said that it is not like Allie is at an important junction and we have plenty of time to find something that works for Allie.  Her concern is that Allie will hit the age when all of her friends are running around and that her gait inconstancies are going to keep tripping her.

We'll put our PT in contact with the physiatrist and see what they come up with.  But, I don't think there is really any harm in trying the splint.  I don't want to jump into the Botox though because Allie has to be totally sedated for it and I'm worried that she may get too much and have a hard time walking.  We shall see.

The neurologist was thrilled with how much progress Allie has made with her right hand.  She was surprised that we already did a second round of constraint at KKI, but she said that the results really show.

There has been a speech specialist who has sat in on a couple of our neurology appointments and, while she wasn't at the appointment today, the neurologist officially asked if we would be willing to participate in the language specialist's study.  I said yes, and we will likely be doing a functional MRI in a few years to map how Allie's brain has re-wired itself.  I think it sounds pretty cool.

Birth Records
I passed off the monstrous stack of Allie's birth records to her neurologist when we were there for the MRI last week.  The neurologist hasn't spent much time going through them yet but she promised that she would get through them this week.

I absolutely adore our neurologist.  I love how open she is and I really feel like we can talk about anything with her.  When Allie and I finally left our appointment, it was an hour and a half past when our appointment started and I felt like our neurologist would have happily spent another hour just chatting with us.  Also, I shockingly discovered that we didn't really have a referral for the physiatrist (I forgot to have it renewed before the appointment) so the neurologist smuggled the physiatrist in for a "consult".  They are the best!

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