Thursday, January 22, 2015

Neurology and PM&R appointments

Our health insurance is with an HMO that we picked when we were childless because it was the cheapest insurance option through my work.  We figured we didn't get sick much and neither of us was terribly picky about our primary care doctors, so the cheap insurance would be fine.  

But once we learned about Allie's stroke, I started to worry that our cheap insurance wouldn't provide Allie with the care she needed.  Would we be able to see therapists?  Would we get the doctors she needed?   Much to my surprise, we were simply referred to outside resources for virtually everything.

We have had unlimited private therapy covered, including intensive programs at KKI and less traditional aquatic therapy through another provider.  They covered the nearly $100k month-long ACTH seizure treatment without batting an eye.  While most of the doctors we see are through other organizations, the in-house doctors we see are great.  

When Allie was a baby, the insurance company didn't have a pediatric neurologist on staff so we got to know a great neurologist at Children's.  A couple years later, they got an in-house neurologist and asked that we meet with her.  We weren't crazy about her so they referred us back to our Children's neurologist without a fight.  

A few months ago we were told that another pediatric neurologist had been hired and we were asked to meet with her.  I was annoyed about the hassle but Allie, Jonathan, and I all met with her yesterday and, much to my surprise, we really liked her.  

The doctor kept reiterating to us how lucky we have been; Allie looks so much better than would be expected with her stroke damage and seizure history.  She said "I know this is weird to say, but you really hit the jackpot with her recovery."

Since Allie is almost three years seizure free (!!!!) the doctor brought up potentially reducing or eliminating Allie's twice daily seizure medication Trileptal. We've been lucky that we haven't seen any side effects from the medication but long-term usage can block calcium absorption and put bone health at risk.  It would be a good thing if she can get off the medication safely.  Our approach guided by our Children's neurologist was to hold Allie's dosage constant even though she is growing, effectively lowering her dosage.  The new neurologist said this is a fine approach but suggested we get some more information to help inform our decision.  

She suggested we get an updated hour-long EEG to see if there is seizure activity in Allie's brain.  If so, she should probably stay on the medication.  If not, we may want get a longer EEG to be sure we didn't miss something.  If everything looks stable, we can discuss removing the medication to see how things go. 

The idea of taking Allie off of the medication causes me great anxiety.  She's doing so well.  Why mess with a good thing?  But, that anxiety is mine and Allie shouldn't be forced to medicate forever because it makes me more comfortable.  The doctor also pointed out that Allie is at a great age to try taking her off the medication because she is still heavily supervised.  She won't be swimming on her own or driving if a seizure happened. 

So, Allie will be getting a new EEG in a couple weeks.  Here's to hoping that things look good... 

One other thing that is going well is our ongoing discussion with Allie about her disability.  On the drive to the neurology appointment we were talking with Allie about why we were seeing this new doctor and reviewing some of the terms she'd likely hear.  

We are converging on some age appropriate descriptions of her key medical terms, such as:
  • Stroke: "When you were a baby in Mommy's belly you got an owie on your brain that is kind of like a bruise." 
  • Cerebral Palsy: "Why your Righty and right leg work differently than on your left side."
  • Seizures/Epilepsy: "When someone's body moves when they don't want it to."
We don't get much of a response when we talk to Allie about these things but we don't want her to be in the dark about what we're discussing.  I've had the often embarrassing realization that Allie understands a lot more than we sometimes give her credit for.  She'll chime into a conversation that I didn't think she was listening to or repeat song lyrics from the radio.  I was listening to a radio discussion of board games the other day and all the sudden Allie started talking about what she was hearing and how she likes Candy Land "much better".  

We hope she at least feels included in the conversations with her doctors.

Allie also met with her physical medicine and rehabilitation (PM&R) team last week to discuss her progress.  The doctors were thrilled with how well Allie is doing, especially with her arm and hand.  She really has made huge progress with Righty.  She uses it so much now that I hardly ever have to tell her to.  In fact, she's usually pointing it out to me.  

"Look Mommy!  I'm using two hands!"

We talked about how happy we were with the Botox last year and she's slated to do it again in March, ahead of her next round of constraint therapy at KKI.

At the beginning of the appointment the PM&R fellow was asking me a bunch of questions about what Allie can do: Can she feed herself? Walk up stairs? Put on her shoes? Walk on uneven surfaces? etc.  After a long string of yeses, the doctor stopped me and said "You know this is amazing, right?"

We are very proud of her.

In non-medical news, we went to a children's museum this week to check out the Curious George exhibit.  Curious George is Allie's absolute favorite.  There were lots of exhibits and things to play with but the real Curious George stole the show.  She really wanted to interact with him but was a little intimidated.

Until she came and asked if she could take a picture of him instead of with him.  She took my phone and was no longer nervous being around him.

I love her photography.

1 comment:

  1. Yes, she is Allie the Magnificent! But she got there because she has two magnificent parents who left no stone unturned to be sure her life was the best it could be. Congratulations!!!