St. Louis Children's Epilepsy Center Recap

Friday, December 13, 2013

When we moved to Missouri and began establishing care with Alli's 20 some odd specialists, my theory was to first see who we could here in the SW MO area...with the mindset that if any new doctor strayed from the treatment plan we were accustomed to and was working for Alli, we would hit the door running. 

Neurology was one of those areas. 

No greater detail is needed other than just to say, the care that was attempted in Springfield was a 360 to what was on the table from Vanderbilt.  Granted we had only seen Dr. W at Vandy once, we had spoken on the phone several times and fully trusted in his guiding of where to go from here with Alli's seizures. 

And the where to go from here included more testing, not immediately juicing her up on medication that may or may not be needed. 

At this point, our only concern is the initial seizure she had in June, not the 30+ some odd staring spells she has a day/week/etc.

We met with the Epilepsy Center at St. Louis Children's last Wednesday.  And can I just say, that I love how God always lines things up.  Seriously, what are the odds that our new Neurologist, specializing in Epilepsy, did her residency under Dr. W from Vanderbilt?? 

An appointment that was initially so nerve-wracking, immediately turned into complete peace. 

After spending close to two hours going over Alli's history, her seizures, her MRI, we both decided to continue not medicating for seizures!  Amen!  While I have heard some very good things come from medicating, I've also heard the horror stories.  I'm certainly not against medication. But if she doesn't need anything, why medicate?  Let's get to the root of the problem instead.   

What we are going to do, is what we were planning on doing at Vanderbilt, but moved.  Alli will have a 72 hour EEG done in February.  If no seizures are shown at the 72 hour, Dr. Ryther, John, and I will then decide 1) continue on for another 72 hours EEG, or 2) know these are not epileptic seizures and continue with our plan of only having emergency meds on hand.

Very simply, we want/need to know are these truly seizures and if they are, are they effecting her development.  If they are or are threatening her in ways unforeseen, a daily seizure medication will be prescribed. 

We ended on the same page, which is always a good place.  She gave me the additional blow of Alli's PVL being one of the worst she had seen in her 20+ years (she could have left that part out).  But I actually had to giggle at the news.  I mean.  Of course she is. 

Defy those odds baby girl!  And rewire that brain, Lord! 

We also received a referral to their Cerebral Palsy Center, which we were anticipating.  Their center is world renowned and provides individualized, comprehensive, and pro-active care for children with CP.  Dr. Brunstrom, who also has CP (how cool is that-gives us such hope), is a leader in this field and we are so excited to have her eyes on our girl. 

Another God move, this I'm sure. 

Next up....clinical trials, pre-k, and intensive feeding therapy.  Lots of prayers, lots of happenings, lots of healing coming Alli's way. 

2014 will be the year of regeneration. 

We're ready. 


1 comment

  1. Thanks for the update! Sounds like you have a plan of action! PRAISE HIM!


Copyright © Jackie Belin
Made with Love by The Dutch Lady Designs