Monday, August 22, 2016

Seizures and the Full Moon



I realized this morning that I hadn't posted a follow-up to Friday's dire post about Sophie's seizure clusterf*@k. I expressed my gratitude on Facebook toward all those people who sent us such loving and encouraging words, but I neglected to do so here, so thank you, thank you, thank you for buoying me. Sophie hasn't had a day that bad in a couple of years, and I have no idea what prompted it. I have several friends in the seizure world whose kids had particularly difficult days last week and over the weekend, too. We all did the dance that I alluded to in my last post, and we all, in our weak attempts at control, tried to figure out why. 

Was it the full moon? Possibly, as many of us are convinced that full moons exacerbate seizures despite there being no "scientific evidence or correlation." The fact that our kids seize regularly and more violently during full moons is generally reduced to anecdote by the great and almighty Science Community. We of the tiny little mother minds™ are apparently just howling at the moon in between wiping our children's brows, preventing their limbs from banging into furniture as they seize, agonizing over whether or not to administer rectal Valium (because the after-effects are so awful), syringing liquids in them because they've forgotten how to swallow between the seizures and the drugs and weeping on the sides of beds at the goddamn relentless of it all.

So, Sophie is home from school today, recovering. I hope. She is refusing liquids -- or not exactly refusing but rather having difficulty taking them. She reaches for her sippee cup and brings it to her mouth but doesn't seem to remember how to suck out of it or how to swallow other than in gulps. I am, basically, force hydrating her, dropping 1 ml syringes of liquid into her mouth and rubbing her cheeks and throat. Last night at dinner,  I compared myself to the British police force-feeding the Irish Catholics and suffragettes. The boys were horrified. Every now and then, the instinct to purse her lips seems to come back, but then she flings the cup away. I've resorted to looking in her eyes and threatening the hospital and IV liquids if she doesn't get it together. This is, of course, in my mind. I don't actually say it. People love to say that extreme parenting teaches you to not sweat the small stuff. It's been my experience that the small stuff is often what breaks you, and this weird liquid strike has the potential to break me every single moment. OK. I broke and wept this morning after getting 4 ounces into Sophie and wondering for one impossibly long moment whether she had permanently forgotten how to drink and swallow. It's happened before, though, so I'm hoping that she'll regain the skill as the drugs leave her system and things calm down with the waning of the moon.

My friend S who is no stranger to extreme parenting (and far more extreme than I despite her son being less than a third of Sophie's age) gets the grand prize of cheering me up the most.  When I shared that my tiny little mother mindin its dogged attempts to control the situation, believes that the full moon might be the cause, she revealed that her son had had a brief and unusual seizure with the full moon but had never heard of that theory.  Here's a snippet of our texts:




But her best comment -- the one that released me from my angst and made me laugh long and hard was this:





We both agreed that the whole thing is particularly frustrating because we -- well -- love the moon.





I'm a little giddy from the loss of sleep and Force-Feeding of Liquids. Can you tell? Saint Mirtha is here, though, to relieve me, so I'm going out with Oliver. Thank you again for all your love and support. I could never, ever do what I'm doing without it.


17 comments:

  1. It was a fierce full moon. The effects are still lingering.

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  2. Hmm. Funny, I have stood and looked at the beautiful, incredible full moon while my daughter has screaming meltdowns inside, and I've laughed bitterly, at my previous hippy salutations to its cold, destructive face :)

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  3. Oh Elizabeth. Here's hoping Sophie is swallowing just fine once you return from your outing with Oliver. I'm sorry. You've been in my thoughts a great deal. Sending love.

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  4. Witnessing is so important.

    I've known those times of ounce by ounce hydration. You're
    both recovering.

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  5. I can't imagine ever not sending love and support, Elizabeth. You and Sophie and your boys are simply a part of my world.
    I've had to do that syringe thing with someone I loved, too. It's very tough, I hope it's over for both of you very soon.

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  6. I have a Russian friend who was trained as a physical therapist over there. In Russia they track the geomagnetic storms and attribute them to a lot of electrical abnormalities in our bodies. So why not the moon?

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  7. I had a yoga teacher tell me the other day that if the moon spurs the tides, for chrissake, and we are mostly water, what do we expect? I am not a scientist, but full moons make me a) feel like shit or b) rev me up. And schoolteachers say that full moons make kids go nuts. I say your 'tmm' is sage.

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  8. My MIL, who has dementia, has had some dramatic worsening of symptoms over this past full moon. And friends who are nurses have always told stories about the effect of full moons at hospitals. I'm a believer.

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  9. I'm glad she is recovering and I am thankful that Saint Mirtha is there to help you.

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  10. These last two posts have been so poignant, my wife and I speak of you like part of our family. Sending Love and good vibrations from our family to yours. On the subject of the Moon, have you ever read the short story "The Daughters of The Moon" by Italo Calvino? checkitout.

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  11. I'm daydreaming now about mermaids and the ocean tides under a full moon... while you were dripping water by the mL into Sophie's mouth. Ugh. May today be better for you both.

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  12. I just remembered the 3 months we spent trying to feed Grace before her heart surgery. Towards the end she was taking 3-4oz of formula... but it would take 3 hrs to drip down the back of her throat. And we fed her every 4 hrs. So 3 on, 1 off, 3 on, 1 off.... Lots of TV and dark thoughts. Funny that numbers trigger those memories.

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  13. Friends that make us laugh and with whom we can co-miserate, are the best. The moon can go to hell.

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  14. Friends that can make you laugh on the darkest days are such blessings. Hope Ms. Sophie starts to drink for you soon. <3

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  15. Wow! The full-moon link is fascinating, as are the comments above that seem to substantiate it. I had no idea! But if the moon can move tides I suppose it can pull on our inner chemistry in some mysterious ways. Makes sense to me.

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  16. Hello dear friend,
    My sister used to work in a hospital ER.
    She told me that you can ask any staff member in any ER in the country and they will tell you the same thing...watch out for full moon shifts....!

    For what it's worth...I believe people who experience brain injury or illness are highly, highly sensitive. They respond, often negatively, to certain intensities of sight, smell, sound, taste and touch. They often display psychic tendencies and can be uncomfortable in the presence of those expressing negative energy (even thoughts) They are extremely sensitive to full moons, low pressure fronts, even electro-magnetic disturbances. They are very in-tune with the universe and what the rest of us can't perceive.

    My son Nicholas will also exhibit more absence seizures immediately preceding an illness.
    Sending you lots of love, good thoughts and hopefully some speedy answers.
    I miss you dear friend.
    xo

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  17. It's the small stuff that breaks you. Wow. No good words, really, except that I am here. Loving you.

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