Our first step on this long road ahead

For two weeks, we have engaged in exhaustive research on not only everything around Alli’s Functional Neurological Disorder (FND) diagnosis, but more urgently how to stop her full-body non-epileptic seizures which are still occurring 13-14 times a day. 

In layman’s terms - where this disorder gets complicated is that we are dealing with the ‘software’ of the brain. The brain itself is not damaged, but the way it communicates with the body and nervous system is corrupted (and now in a system error loop every 60-90 minutes). So, the goal is to re-train the brain to communicate effectively. 

Although there are a variety of programs out there that mention treating FND, not many truly specialize in Functional Neurology and the ability to create individualized treatment plans that are tailored to Alli’s unique needs.

We have decided to engage in a two-week intensive program at The Functional Neurological Brain Center of Florida, as we trust in the confidence of Dr. John Conde and the methodology and technology that he utilizes to help reduce the volume of seizures that Alli is having each day.

Unfortunately, this is an extremely expensive program and due to the demand of their services, the first available time to begin the program isn’t until October 12th.  

This is only the first step on what will be a very long road ahead in managing this disorder - and this is only the first of a variety of therapies Alli will need moving forward.

We are so incredibly grateful for your support, and please keep sharing these posts with your online and offline communities. Through this network of support, we have already been connected with folks who have shared their own experience with this disorder, and who have helped us to navigate this incredibly frustrating road a bit more efficiently.

We will continue to keep you updated each step of the way.

Thank You All.