Glad Day or The Dance of Albion - William Blake, c.1794I'm ready to type these words in a normal size and font.
Sophie has not had a "big" seizure in over two weeks. The last two days she hasn't had a single seizure all day.
That's right.
And now I'm going out on a limb and stating:
Sophie is taking a homeopathic remedy and the homeopathic remedy is helping her dramatically.
Except for a brief period of about four years on the same homeopathic remedy, you must know that Sophie has had uncontrolled seizures her entire life.
This is no coincidence and I will repeat:
The homeopathic remedy is dramatically reducing Sophie's seizures.
The thing is, when I tell people this they get nervous. They don't believe me. Really, they'll say. What else has changed for her? I know that if I were to take her tomorrow to The Neurologist, she would shake her head and not quite believe. It's been my experience that doctors, for the most part, don't seem to care at all about this sort of thing. Even my family can't quite wrap their brains around this possibility. That something alternative is helping Sophie in a very concrete way.
Before we started this new dose of oleum jecoris aselli, Sophie was having around 1-5 huge seizures a day. She had countless clusters of small ones. She was very dopey, tired or wired. She was extremely thin. I feared for her life.
So I will repeat this: we are less than two months into the remedy and she has gone over two weeks with NO big seizures. The smaller seizures happen in the morning, when she wakes up, and for the last few days, they have been minimal.
These are the drugs that Sophie has been on during the last fourteen years:
ACTH
Prednisone
Mysoline
Nitrazepam
Phenobarbitol
Depakote
Depakene
Klonopin
Clobazam
Zonegran
Lamictal
Vigabatrin
Topamax
Diastat
IvIg (technically not a drug, but a treatment)
Ketogenic Diet (not a drug but a treatment)
Felbatol
Keppra
Banzel
Not a single drug helped Sophie in any significant way. Almost all had significant side effects, including irritability, depression, anorexia, increased seizures, sleeplessness, ataxia, somnolence, extreme constipation, pain.
Wouldn't you think someone, somewhere -- some kind of professional, a neurologist, perhaps, would be interested? Come running?
They won't. And it makes me too tired to even explain why I know this.
Sophie might have a big seizure tonight or she might not. I have no idea what the future will bring. But what I do know is that she is dramatically better right now. The boys think she's gone wild, such is her energy and enthusiasm. She's been pulling everything down from shelves in her room. She is knocking over baskets of toys, reaching inside them and throwing them around. She is looking us in the eyes insistently. She doesn't know what to do with herself, the self that lies deep within, stifled and smothered and exhausted by seizures. I am trying to imagine her brain, free and wild and beautiful.
It is, quite literally
MIND BLOWING.
This is such wonderful news. I had no idea that the progress was so clear, so marked. I love what you wrote about her energy, and loved seeing her in the photo, up and about in her room. What joy! What a gift!
ReplyDeleteHow insane, that no one in the field wants to know. I think I'd be incredibly frustrated by that.
You are SUCH a great mom, that you are honest about all of this, you can face it and process it in a healthy way (writing), and are PRESENT. I love Buddhist teachings, and clearly, you have absorbed a lot of them. Thanking God that you are the woman you are, and that I've met you. You inspire and strengthen me. Much love to you and your family, especially that beautiful girl of yours.
I a so happy for you and especially for Sophie. I am copying down the name of that homeopathic, but I intend to get a hold of a homeopath myself and start treating my Sophie more vigorously in this manner. We are pretty much struggling here with what may very well be called "partial seizures", as she remains very alert and communicative during bouts, but is still fully engaged in the body and limbs. Totally sucks. I know, like you, what works and I know, like you, that no doctor will ever step out of the box long enough to look into it...sad for all the children in the world.
ReplyDeleteI'm so glad you can say it out loud. I'm astonished at the results and hope that this is the new norm.
ReplyDeleteElizabeth this is fantastic news. I am so happy for all of you, but mostly for you and Sophie.
ReplyDeleteLook how beautiful she is.
love Renee xoxo
Homeopathy is so hard to wrap our western heads around. It makes no "sense." And yet, I've seen it work too. And it works on animals- some vets use it.
ReplyDeleteI am just so very, very happy for you that you are using this remedy and that it is working for your beautiful daughter.
In a way, I feel sorry for our doctors. It's like with childbirth- they are taught nothing but the pathology of birth- never the normalcy and they don't know how to even look upon birth as anything but a crisis. Their training is such that they can't accept that there may be other ways to deal with situations other than the ones they've been taught- western medicine, machines, surgery.
We have to be brave and give them evidence of the possibility of alternatives.
AWESOME!! That is so good to read!! I'm so down with trying natural/alternative medicine! It totally works and why not! Praying that this streak continues!
ReplyDeleteNow girl, be real. Herbs? you would think the world survived with those for hundred of years, that foxglove could be good for your heart and that women turned to those little old ladies to help them with their potions when they had a difficult time giving birth. Really? And where is the profit belonging to the pharmaceutical companies in that, excuse me?
ReplyDeleteWhy, you would think that an Ayurvedic diet would help someone who has a Ph.D and should know better to solve a problem that plagued her for many years without solution until the list of pills grew so long and she so tired of taking them that she was ready to let go and starved herself to death rather than spend the rest of her life in the agony she was living in. What could some strange combination of legumes and herbs do to solve her problem when thousands upon thousands of dollars in "real medicine" didn't do a thing, except making those invested in devaluing the alternative medicine, richer?
You know what really bothers me the most about this? The fact that there is the wall of silence that brings forth no more confidence in our western medicine but more mistrust. I am with doctor Weil when he said "if I get hit by a car please don't take me to an herbalist" but when someone is thought of as "well, if this doesn't work this may..." and when reaching the end of the rope, not even then, instead of saying "we don't have anything to offer but there are ways that may work and you should at least give those a try" our medicine men and women pretty much, even with all the compassion they manage to muster, give up without a whimper.
I am delighted as you must know that Sophie is getting to be Sophie. I don't believe anyone knows for certain what the effect of those non-working chemicals may be both in the physiology of the body and the activities of the brain. Maybe cleansing the system and starting anew will show the way. You may have to make changes and adjustments and try this and that. But in the final analysis in this world of imperfect solutions you are trying not for perfection but for a touch of faith mixed with some herbs. Even if they don't work the way we hope, they are not bound to do the damage that some meds do. Hug Sophie for me and tell her I know she is coming out of her shell.
Shrieking with joy! Yes--absolutely. And Robert has been able to physically access his communicator now about 10 or 11 days out of 14.
ReplyDeleteMy word verification for your blog is "bless." That must be a sign.
OMG, Elizabeth. I am just getting caught up with your blog. I am happy for Sophie, Happy for you and your whole family. Wonderful.
ReplyDeleteI am in tears over this post -- that Sophie is doing SO well on this remedy and that you can relax into it and celebrate. How wonderful to hear of no big seizures, her energy and insistent looks. The picture too speaks volumes!
ReplyDeleteMy word verification is soarinni -- may Sophie continue to SOAR!
Wow. My first time on this blog, and I seem to have hit a very exciting moment! I don't yet know you, but was so thrilled to read the news. I am going to ask our neurologist about that remedy. My son is on Trileptal, a couple of months ago he had the second seizure of his life (he's six, he had a stroke at birth).
ReplyDeleteYou are a wonderful writer. I'm also a writer, and an editor. I find my blog more satisfying than anything else I do, next to being a mom to Max and his little sis.
Like you, we've had a long journey. We are about to get Max stem cell therapy at the end of August, and while I am not expecting miracles, I have hopes. We have always been up for trying anything that couldn't hurt him and might help him.
OK, it is nice to "meet" you and Sophie. I hope the seizures keep diminishing.
Elizabeth, I have goosebumps. For you, for her, for your beautiful writing of it. Yes! I hear you. I believe you. I hope it sticks.
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ReplyDeleteMy son has intractable epilepsy and I am very interested in hearing about your success with homeopathy. I looked up oleum jecoris aselli on the internet and was suprised to find out that it is another name for cod liver oil. I'm assuming it's homeopathic form is different from the stuff you can buy in bottles over the counter? Please could you let me know -if you get the chance. I'm also planning to try and find a homeopath that has some experience of epilepsy in my area. I know what works for one doesn't necessarily work for another ...but it is worth a shot. Thanks for sharing your good news and passing on the info.I am really pleased for you all.
Thank you, everyone, for sharing this new joy with me! My blogger friends, you all, are sustenance for me!
ReplyDeleteLynn -- Oleum jecoris asseli IS the homeopathic form of cod liver oil. It's not the same thing as cod liver oil but rather the distillation of it and really only a true homeopath can prescribe what remedy is right for your child. I hope you find some relief for your son!
OH MY GOD!!!! I AM SO EXCITED! for you! for sophie! this is wonderful wonderful news!!!
ReplyDeletefuck the doctors. i'm sorry to swear here. but i mean it. fuck them!! what do they know?????? this homeopathy! woopieee! i am sending blessings. blessings!
and WOW! what a great photo of sophie! she blows me away.
AWESOME!!!!!!! So happy for Sophie, for you, the boys, your husband. Wonderful!
ReplyDeletei think you're brave to go out on a limb and say things in font sizes big enough to read even when know there'll be doubters and nay-sayers. enjoy every second of reprieve she gets. whether the next big seizure is tonight or in two weeks or in two years, something kept it from happening for two weeks. awesome.
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