Epilepsy Awareness Month - November 2023

                                      

Epilepsy has been a very big part of our lives since we were blessed with Sage. Epilepsy affects each person and family differently. There are numerous disorders that encompass epilepsy that all come with their own unique struggles. For us, we noticed “strange movements” from the time Sage was 6 weeks old, but she wasn’t officially diagnosed with Epilepsy until the day after she turned 4 months old. (Writing that down right now, just feels crazy…She was so little!) 

Sage’s first diagnosis, our first step into the world we are now all too familiar with, was Epilepsy. It was a term I understood, and it was terrifying. I have a cousin with a daughter who also had seizures at a young age, and I reached out to her about what she went through. It was encouraging to know that there are others going through something similar, but still very overwhelming to think of all that I now needed to worry about for my child. She did give me hope that many children can “grow out” of having seizures, but soon after our initial diagnosis, Sage proceeded to get more extensive diagnoses. 

Sage’s journey with seizures started with Infantile Spasms that consist of short, 1-2 second jerking movements, if they continue later in life, they are called Myoclonic Seizures. As I said above, for Sage those started at about 6 weeks old. At 4 months old she started having Grand Mal (Tonic-Clonic) seizures, Focal Seizures, Tonic Seizures, and she also continued to have Myoclonic Seizures. There are many other types of seizures that affect people, but these are the ones we have the most experience with. 

To be diagnosed with Epilepsy, you have to have multiple seizures, and sadly…Sage has had thousands (and that number isn’t exaggerating). The way I see it is each of Sage’s disorders are a part of a big circle and Epilepsy is only the outer circle. Her seizures are the outward expression of everything else she is going through internally. 

 

In March we celebrate #MarchOnPVNH and one of the topics we focus on is Epilepsy. I loved how my post turned out this past March, and wanted to share part of that post here:

“Epilepsy used to be a scary word to me, but now it is a part of my daily life. Sage has actively had seizures the majority of her short life and I have learned so much more than I ever thought I would about seizures, seizure medication, types of seizures, things that cause seizures, triggers that can make them worse, environmental influences, and so much more!

Seizures are a constant part of our days and a cruel reminder of everything going on with Sage. The majority of people diagnosed with PVNH have seizures at some point in their lives, but the most don't start having seizures until teen years or even later. But with her Aicardi Syndrome (which is actually her cause of PVNH) those seizures always start as an infant and are usually hard to control. 

Sage has been on, and technically failed, 9 seizure medication in her short life. And one surgery to place a Vagus Nerve Stimulator to help control her seizures. We are still adjusting the VNS and it can take up to a year to find the correct settings for her. 

To fail a med it means that she has continued to have seizures despite getting the medication to max dose or having to wean medication for other reasons. 

Seizures look different for each person and there are so many different types. Sage has experienced at least 6 different types: Infantile Spasms- full body tightening for a split second and coming in clusters (she had episodes of these for over an hour at a time- over 10 a minute), tonic-clonic seizures, tonic seizures, clonic seizures, head drop seizures- associated with Lennox-Gastaut Syndrome, focal seizures- affecting both left and right, Generalized tonic-clonic seizures- usually happened before or after a focal seizure. 

Sometimes it hits me how crazy our lives are, seizures have become a “normal” thing for us to see on a daily basis. But I will say, no matter how many times I see Sage have seizures, it never really gets easier. I have learned how to cope during her seizures, learned techniques that help her come out of them a bit quicker… sometimes, learned she usually overheats during them so we have to take her somewhere cool, found certain oils that should help, and just learned how to stay calm and how to best track them. But every once in a while, I break, and just hold her and cry as my baby struggles. 

Sage has been developmentally delayed since her seizures started at 4 months old. She has had huge set backs and awful side effects from medications, but she is such a fighter! She still finds the strength to smile and giggle after she has seizures. She continues to work so hard to gain better control of her own body and she loves being involved in everything we do. She takes it all in. 

I would love to see a cure for epilepsy, to see Sage have some relief from the constant seizures. But for now, I just pray we can find the correct medicine combination to give her some relief.”

Last year she could sit for about 20 minutes independently, but then her seizures began to increase. With the increase of seizures, we tried new medications and with that combination she began to regress…. A lot. She went from sitting on her own to barely being able to hold herself up at all. It was awful. After trying medication after medication with terrible side effects, we decided to wean a bunch of them and try a newly FDA approved medication, Fintepla. It has been FDA approved for less than two years. 

She has now been on it since September 2023. She is still having multiple seizures a day, but the seizures have noticeably decreased, and more evident than just the number of seizures, is her temperament and development. She has FINALLY started to improve in her overall well-being. She has started siting independently for up to 30 seconds at a time, she will pull herself up into sitting with minimal support,  her muscle tone is slowly increasing, she can STAND with support for a few seconds at a time, and she has been trying to use her arms a bit more (she uses her arms the least of anything, it has been a struggle to get her to use them at all, so that is a huge deal). 

Epilepsy isn’t something that I ever expected to have to learn about or deal with on a daily basis, it is something I am sure no one wants to have to experience in their lives. But the past two years have been a crash course, and we have learned so much about seizures and everything else that comes with them. As I said above, seizures are just the outward expression of so much more going on inside of my beautiful baby girl. Seizures are what the world sees, but I see a strong little girl who can endure more than anyone else I know. I see the drive and strength it takes for her to recover after seizures, how hard she works in therapy and how she does it all with a smile on her face. She is such a source of encouragement to me and I only hope others can see how amazing my beautiful #epilepsybaby is. 

Happy Epilepsy Awareness Month!