June 13, 2017

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A Long Night

June 13, 2017

Last night my husband witnessed Eva having a seizure. No, it was not the type of seizure most people picture when they think of a seizure (tonic-clonic – a.k.a. grand mal). Like many, pre-BPAN, I envisioned a writhing and convulsing body, violently shaking and "foaming" at the mouth. And although, I am sure that this is a reality for some people who live with epilepsy, Eva’s seizure was quite dissimilar from this picture and nonetheless, equally jarring and unsettling.


After what had seemed like a long period of fussing, crying and refusing to go to sleep in her bed, I caved and let Eva lay down in bed with me. Although there is no one better to snuggle with than our Eva Magoo, it often takes her a while to get settled, and more often than not she kicks and shifts her legs until she finds a comfortable position. Finally after much tossing and turning, she fell asleep in my arms.


About 25-30 minutes later, Eva woke up from a dead sleep and sat straight up, soon after which Robert (my husband) came into the bedroom to take her back to her bed (at this point she had been up less than a minute). Robert picked her up to carry her back to her bedroom, however he was back shortly after leaving. Worriedly, he said, “Something is wrong with Eva”. When he had picked her up from the bed, her body had “shivered” slightly and instead of "assuming the position" - thumb in mouth, head on his shoulder (she is normally a big mush), she now held onto the back of Robert's neck with out-stretched arms, her knees and legs, tightly and stiffly pressed up against either side of his waist and her head cocked slightly to the right as she gazed up towards the ceiling. He said she had been like this the whole time while he carried her to her room, arms and body rigid gazing upward. We both called her name repeatedly and stroked her face and legs, which produced only slight movement and a tentative smile, however her gaze was that of “nobody home”. Only after another minute or two did she finally seem to become aware of our presence and respond with a more typical Eva smile.


Needless to say, my husband was completely unnerved. Even this morning he was still shaken. He had never witnessed her in this state. I had previously suspected that Eva had been experiencing seizures for quite a while and had seen her in similar states, however never for this length of time. It is one thing to have a suspicion that your child is experiencing seizures, however was it was quite another experience to see my husband, a grown man, looking so vulnerable, holding onto our daughter, completely powerless to do anything. I know he did not sleep well last night.

Although Eva has had a 24 hour EEG and an extended 48 hour EEG with video (three weeks ago), both EEG's came back normal, only showing some abnormal electrical firing which we were told was "normal" for children with developmental delays. Fortunately, anytime I hear this statement from doctors/specialists, I know that nothing is "normal" especially when it comes to our Eva.

This led me this morning to first, reach out to some of my more experienced BPAN moms who provided me with some direction and information and more importantly, much needed moral support, followed by a call to my local branch of the Epilepsy Foundation in Miami. What followed was a conversation with an exceptionally kind, patient and understanding representative at the Epilepsy Foundation who scheduled an interview for this Wednesday morning so that I could be assigned a Case Manager. The Case Manager will facilitate the process of connecting me with a local epileptologist and help me to identify which local resources and state services may be of benefit to Eva and our family. Also, the representative “promised” that they would help me find a doctor who was willing to "listen" to Eva's specific case history. I can only hope that this will lead to a better understanding of her seizure trajectory and possible management and treatment.


I know the internet can be a wonderful resource however it can also be overwhelming to sift through the amount of data and "facts" available. The Epilepsy Foundation’s website www.epilepsy.com had an amazing wealth of information from testing, to diagnosis, seizure tracking tools, medications, treatment plan templates and legal resources/laws which protect children (and adults) with epilepsy. It also included a comprehensive handbook on IEP's, "Legal Rights of Children with Epilepsy in School & Child Care: An Advocate's Manual" which can be applied to just about all IEP’s (it is a 2011 edition, however, much of it is still applicable). The manual is formatted in a FAQ style and covers all aspects of IEP's, with special focus on IDEA, FERPA and ADA compliance and even includes case law.


After reading the descriptions on the www.epilepsy.com website, I have no doubt that what my husband and I witnessed last night was a Focal Onset Aware Seizures (simple partial seizures http://www.epilepsy.com/learn/types-seizures/focal-onset-impaired-awareness-seizures-aka-complex-partial-seizures) and no, neither of us carry a medical degree, however, what we witnessed last night and what is described on the website, serve to support our belief.


As was suggested by the BPAN moms with whom I spoke this morning, I will record any suspected seizure episodes I witness and keep a diary so that I can track Eva’s seizure activity. I have also provided a print out with a description of the seizures to Eva’s therapists so that they too are aware of what to look for so that they may provide me with records of anything that they witness.


I am grateful that I started the process of finding a seizure specialist last week by reaching out to our NBIA/BPAN Team at the Oregon Health & Science University and also to a parent I had met while at the NBIA Family Conference, anticipating that my daughter needed a "team" player who would actually listen to our story. Now I can only pray that locating a qualified and compassionate epileptologist with whom we can work with locally, may not be too exhaustive of process. Prayer and meditation…Wednesday morning still seems a long way off.


#evamagoo, #BPANADVOCACY, #teamnbia, #curebpan, #curenbia, #bpanmoms, #epilepsyfoundation

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