Epilepsy Warriors Pt 1 - Cash and Veda

One thing that has been invaluable for us as parents of a child with Infantile Spasms and PVL is Support Groups.  It is there where you know you are not alone.  It is there where others are facing the same tough decisions, heartbreaking setbacks and trials and tribulations of doing everything in our power to make the damn seizures go away.  It takes a toll on you, in all facets of your life.

We owe a lot to Support Groups.  Starting with the Philippine Cannabis Compassion Society, then to all of the Infantile Spasms, CBD and PVL Support Groups on Facebook, we have met so many kind and wonderful people and learned their stories.  In some cases, they were very much like Rhythm's.  Everyone has a unique story to tell.

Rhythm is doing good.  She is four months seizure free, still being treated by Haleigh's Hope and Child's Life Multi-Vitamin.  She is receiving Physical, Occupational, Speech and Vision therapy.  She is beginning to sound out consonants, like Mama and Baba.  Such a small thing, but such a huge thing for us.

Every so often, I want to offer this blog as a chance for others to tell their stories.  Let us know about their little Epilepsy Warriors.  Let me introduce you to two of them: Cash and Veda


Epilepsy Warrior: Cash Hunter
Story Provided by: Savannah Chantel Hunter

A little history on my son Cash.  He began having myoclonic  seizures at 3 weeks old.   After all the testing that takes place he went home on Keppra, Phenobarbital, and B6. Had to adjust the dose a bit but eventually we had control and weaned off Pheno, then B6 as he tolerated Keppra so well and we were about to start wean that until this past March, 1 year later to the day, his seizures returned. But they were different initially clonic tonic with desaturation but then he was having seizures that where the only that would happen is he'd stop breathing,  a few times his heart stopped, but then revived himself as I prepared for CPR. The doctors started him on the ketogenic diet in early June. Still continued to struggle with seizure control. Father's day weekend he had a different type of seizure where just his head dropped and he was out of it for a few seconds then fine and resumed regular activity. Wasn't overly concerned as his other seizures were so severe. Since the seizures were continuing they started him on Vimpat. Contacted our other Neuro, that we went to for a second opinion In December, she reviewed VEEG and felt he was a candidate for hemispherectomy.  Well he wasn't and he had 40 seizures in 24 hours of 3 different types.   One being infantile spasms and they believed that the spasms actually caused the apenic seizures.

Our journey since July has been rough.  They started him on Sabril first since he was still on keto and ACTH wouldn't work well with that. That successfully stopped apenic and generalized seizures but not I.S.  Then started first round ACTH.  After 1 week, I.S.  stopped but he had high blood pressure.  Weaned off after 2 weeks and I.S. returned before wean was complete.  Had him go straight to prednisolone thinking he would tolerate better with blood pressure.   Nope, not our little medical mystery, actually made it worse.  Then tried toprimate no change not even with the generalized seizures that returned.  So tried second round ACTH with 3 weeks high dose,  4 wk wean, that we're currently on.  IS have returned. Tried Depakote caused elevated heart rate.  Now trying hh 20:1.  Was having myoclonic seizures, generalized clonic tonics,  and myoclonic. Still on Keppra, vigabatrin, ACTH wean, and reintroduced Haleighs Hope.  In the past few weeks, Haleigh's Hope has stopped the clonic tonic seizures, but unfortunately is still on clonzepam prn.  The prn is as needed, but it has stopped the myoclonics and infantile spasms.



Epilepsy Warrior: Veda Salazar
Story Provided By: Sarah Salazar

I have a beautiful daughter named Veda. She was diagnosed with atypical absence seizures right after her 12 month vaccines. She had every test imaginable done to find the root cause of the issue without success. We have tried two pharmaceuticals (ethosuximide and topamax) without any success. She had all the nasty side effects and no seizure control with them. We then tried CBD, a combo of CBD, THC, AND THCA. A couple brands with no success. Finally we got her into a clinical trial in a different state  using castor bean oil to mimic the ketogenic diet. Unfortunately this didn't work either. We were running out of options.... Being a naturally minded person I wanted to not go down the pharmaceutical route again unless it was absolutely necessary. My husband and I  pushed for the ketogenic diet. This was a daunting option but felt it was the best. My daughter at one point also was thought to have Glut1 Deficiency Syndrome. The best and basically only treatment option for Glut1 is the ketogenic diet because with glut1, glucose isn't able to get to the brain. This causes impairment of motor function, seizures, developmental delays etc...

Fast forward 4 months we started her on the ketogenic diet at a 4:1 ratio and the seizures went away! This was the miracle we needed. Prior to the diet she was having up to 2,000  Petit Mal seizures a day and also atonic seizures. At this time I also saw a link between Fiji water and a decrease in seizure activity. Fiji water has naturally forming silica and also other trace minerals. The idea behind the water is it is supposed to detox aluminum from the brain, whatever the cause of her seizures I am so grateful to have her on a regimen that works and that is natural. Her body is fighting inflammation and 'healing' and I feel hopeful this will continue to work for her. She also takes cod liver oil daily and forms of magnesium.


A special Thank You to Savannah and Sarah for sharing their story so far.  My wish for them and for every parent that reads this and is going through a similar situation, is for complete and total healing of their little warriors and a life free of epilepsy.


NEXT BLOG POST: THERAPY TOYS