intractable epilepsy

My daughter had her first visibly recognizable seizure 15 years ago this month (April 15, 2004), it was extremely tough to watch my child go from blank stares that I could not get her to break from to a completely stiff body then full body, uncontrollable jerks. We thought this may have been cause by an illness, a fever until it happened again, and different instances of stares, some quick moments of the jerking. I can’t remember the date when she was officially diagnosed with a seizure disorder/epilepsy but, I know she’s had a long history of mixed seizure types; Grand mal, generalized tonic-clonic (with clusters), myoclonic (jerking), dialectic (staring), nocturnal. All of that lead her neurologist diagnosing her with Intractable& catamenial epilepsy. On March 12th, she was implanted with the Cyberonics SenTiva for VNS therapy to help her with intractable . Intractable are seizures that fail to come under control easily with medication. VNS- vagus nerve stimulation is supposed to help reduce the frequency and intensity of seizures. It’s been 6 weeks/42 days since “implantable parts” have been placed with hopes of helping with her fight against seizures, how is it going? Have the seizures stopped?
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Things are going well! I’m thankful we decided to get the VNS. The seizures have not completely stopped. However, they have NOT grown in rapid intensity like they used to before VNS. In the past, I have watched Kerstin start having small seizures that may start with a stare, then the face twitches increasing to the jerking and the only thing that could be done was staying close to her, reassuring her that I was there, hoping it would soon stop. Sometimes they would, a lot of times they would not, causing a need for Diastat or at really bad seizures she would need 2. The aftermath; she would be so groggy, sleeping for hours and hours. Since VNS placement, when a seizure is spotted, a swipe is given, sends pulses thru the nerve to her brain to slow the activity. We journey on!
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#VNS #Epilepsy #SeizureDisorder #Seizures #IntractableEpilepsy
#Myoclonic
#Dialeptic
#NocturnalSeizures
#CatamenialSeizures
#DandyWalkerSyndrome
#SpasticQuadriparesis
#DevelopmentalDelay

I fight for my life every day although I’m in pain. I have suffered so much and continue to suffer this debilitating condition becoming weaker and weaker mentally, emotionally and physically. The memories of my trauma continuously haunt me, even when I’m sleeping. I’m exhausted from everything. I wonder why I continue to fight. I have come to the conclusion that I am fighting for my loved ones, I will continue to live in pain.

#InsideOutChallenge