So, Sophie's overnight EEG shows a recurrence of ESES. That stands for electrical status epilepticus in slow wave sleep. In layman's terms it demonstrates an EEG (or brainwave) pattern of near-constant spikes and waves during slow-wave sleep. In even simpler terms, it means that Sophie's brain is seizing more than 85% of her sleep, sub-clinically. Sub-clinically, means not to the eye.
We suspected as much and the news is not a surprise. It would account for her exhaustion and her frailty. She had this very rare syndrome over six years ago and it can recur.
I'm resigned to it, actually. The last time she had it, I was convinced that she had given up and was going to die. We were given three treatment choices, which I'll call Door Number One, Door Number Two and Door Number Three.
Door Number One: High Dosage Steroids
SLAM
Door Number Two: High Dosage Valium
CLOSE DOOR
Door Number Three: IVIG (intravenous immunoglobulin)
She'll be treated with infusions of intravenous immunoglobulin over a period of time. It means at least one short hospitalization and then subsequent home treatments (if the lovely and accommodating Anthem Blue Cross does us right). It's a bit of an answer for the short term. The treatments will be terribly expensive and have some risks, but it worked before and hopefully will again. We'll do our homeopathic and osteopathic thing to support her.
It's Friday and I've done nothing today but talk to The Neurologist, my mother and cleaned out the area under the sink where all the cleaning supplies are. I've finally purged our house of toxic chemicals. Except for the two McDonald's glasses sitting on the dining room table.
The birds are singing in my backyard, and the illegal Korean daycare center operating in the house next door is finally quiet. The crows have cleared out. They were raucous earlier, driving me nuts with their macabre squawking and energetic hopping.
I'm going to pick up those boys of mine and sing all the way home.
cheap vodka, vinegar, water and a few drops of tea tree oil make a great all purpose cleaner .... and baking soda is a great scrubber ..... but you probably already know that
ReplyDeleteI hate picking a door! I feel like the options are..... "would you rather be eaten by a shark or an alligator?"
ReplyDeleteReally? These are my choices?
So sorry Puss is toxic. Save some of the cheap vodka for yourself :)
I really don't know what to say except I'm here if you need to talk. Sophie's in my thoughts.
ReplyDeleteI love you.
ReplyDeleteI don't know how you do it, Elizabeth - stay sane in the face of such adversity and then record it so powerfully.
ReplyDeleteI suppose it's the thing writers do - get hold of their sense of helplessness by putting it into words, that way at least you can share it and also get some semblance of control, however illusory.
More power to you, Elizabeth. As my husband and I often say to one another when faced with the next uphill battle, 'soldier on'.
To you I should say, 'sing on'.
Singing is the best therapy I know!
ReplyDeleteHow awful for all of you - I'm so sorry she's suffering this way! Will you be allowed to stay with her when she's inpatient? I wish I could help! - and I hope that "door number 3" is the one to give Sophie -and all of you- relief. God bless you!
ReplyDeleteLove.
ReplyDeletePrayers.
Marys aglow.
I'm very sorry to hear that and I can't imagine how exhausted Sophie must be with no respite from those seizures.
ReplyDeleteI'm glad you have door number 3 -- it sounds like a good one. And I loved hearing all the vivid details of your day. Hugs xo
fuck. can i say that? fuck.
ReplyDeleteokay then. door number 3. i'm sending visions of washing the ESES away. like those toxic chemicals out from under your sink. cleared out. gone.
something about this post is incredible. it's the woman behind it, writing. it's your spirit.
ReplyDeleteGlad you have door number three.
ReplyDeletetruly your courage rings out with every word. it's just stronger when you sing out.
ReplyDeleteholding you, hoping.
Praying for your family, Sophie, and door number three. Keep singing...
ReplyDeleteIf there's anything I can do to help, I'm here.
ReplyDeleteUgh. I'm so sorry, Elizabeth. I wince every time I hear the term status epilepticus. I thought seizures were invented in hell, but then, where does status freaken' epilepticus come from... No wonder Dante wrote about different circles of hell. I'm hoping and praying that treatment number 3 will help Sophie and your insurance company will pay for it. It makes my blood boil that you have to worry about insurance coverage for Sophie's treatment, on top of everything. But I always marvel at your strength and grace and intelligence and the way you just keep treading on. I hope that after having dealt with this insanity for 15 years, I will have your sanity and strength. Lots and lots of love to you!
ReplyDeleteHoping that the process of Door 3 is as smooth as possible. You are in my thoughts and prayers.
ReplyDeleteWishing you and sophie all the best with Door #3. I hate that you guys have to go through this...big hugs!! :)
ReplyDeleteYou're climbing another mountain. Damn. But the possibility of calming Sophie's sleep is a sunrise in waiting.
ReplyDeleteYou and Sophie have my thoughts and hopes.
wow. Just wow. Seems like you picked the only logical door and I hope that leads to relief and recovery.
ReplyDeletedon't you find it odd that the term is "status". Iknow what it means in this context but basically it's saying "this is the way it is"
But we know that already. Our question is how do we change that status. And that leads again to door #3.
I do hate the process of picking a door, when none of them seem great. I have read good things about IVIG in long-term seizures and LGS specifically. Sophie's seizure results sound very similar to my Peanut's. They said she was seizing about 75% of the time she was asleep. That just SUCKS to hear.
ReplyDeleteI hope that the IVIG helps. I will be interested in seeing the outcome, since we've talked about trying it here. Hopefully it will do a lot of great!