Saturday, November 3, 2012

Drug mule, mewling and Jesus



So, it seems like it's that time again. Given that Sophie is having up to three big tonic-clonic seizures a day, again, and also moans and hums an inordinate amount of time, her drug regimen is suspect. Is it the Vimpat? Is it the Clobazam? I have no idea, although I'm certain that the weaning of one or both will be brutal. I'm trying to have the energy to figure it out and take action but feel slow in the doing, slower than I ever have before. I've made the calls, done the rounds and am thinking of doing the whole alternative thing, again -- the homeopath, the Chinese doctor, the osteopath.

Know any shamans?


These are the drugs that Sophie has been on during the last eighteen 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
Vimpat
Clobazam

The efficacy of nearly all of them has been questionable; the last two were desperate measures as I'd said that I'd only try a new drug again if Jesus himself offered it. And we all know that Jesus doesn't offer drugs to children who seize.

Reader, if you're as familiar with anti-epileptics as I am, would you wean the Vimpat or the Clobazam first?

26 comments:

  1. Sending love, with prayers for strength & wisdom for you.

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  2. Dear Elizabeth, my heart literally aches at what you and Sophie are going through. What happened the last time you tried the alternative homeopathic approach? I dont think i was reading here then.

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  3. Have you tried the brownies yet?
    I wish I had an answer for you. God, I wish.

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    1. yes, i wanted to ask about the brownies, too.

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  4. I will keep her in my prayers.

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  5. I just don't know. Our journey so much shorter then you all, I just don't have the knowledge to weigh in. Just sending peace and love and strength for the days ahead. And love to sweet Sophie. Lots of that to her. Wish it were enough.

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  6. My son has been on most of the drugs you listed, and right now is on Clobazam, Trileptal, Vimpat, Prednisone, and Piracetam. He still has at least one big seizure a week with a few little ones in between, which is the best seizure control we've ever had. Personally I would wean Clobazam first as the side effects for my son have been the worst on that one. That is likely the drug we are going to try to wean in a couple of months. I think it is a total crapshoot though.

    Thinking of you and Sophie...seizures are horrible.

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  7. sounds like a most difficult disease to manage. I wish you luck and clarity, and success. And to Sophie as well, who is a gorgeous young woman.

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  8. Well, shit.

    I have no advice to offer. I'm on Keppra right now, and Vimpat has been suggested as a supplement for if (when?) Keppra stops working.

    I guess the semi-positive thing I can say is that when I've had tonic-clonic seizures, they haven't been painful or distressing--just exhausting. And I don't remember anything from them. They're far more devastating for Biffle than for me.

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  9. God bless it all, Elizabeth; you both must be exhausted.

    Of the two, i've only been on Vimpat, and for me personally, the side-effects aren't too bad.

    I've never taken Clobazam, but the effective dose of benzos seems to increase more rapidly with this drug class than others in my experience. Plus, rebounding seems to be an issue with them for me, so they've been relegated to the emergency only arsenal for now.

    Definitely one helluva decision. Withdrawing from benzos is akin to the task of brushing the devil's teeth or clipping his ingrown toenails. Such a catch-22. I really feel for you.

    Here is the earliest known depiction of Jesus prescribing cannabis: Pharmacist Jesus

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  10. My two cents -- and we all know it's a guessing game. I would wean Clobazam. Anytime we have had Benzo's effects lesson, we pay the price with not having good ER control. Have you ever tried layering ER drugs? We will use Phenobarb and Dilantin when Nolan's seizure's get out of control. It seems to re-set him and we have better response to his maintenance drugs again. Food for thought...Best of luck.

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  11. I have nothing but sending you love & hugs & - I don't know - anything else you need. Brownies?

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  12. I hate all the drugs! My son has tonic clonics also. We are having some relief with the ketogenic diet. Did it help your daughter at all? I'm becoming a believer.

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    1. Yes, Ann! Sophie was put on the keto diet in the dark days of 1995, when she was just an infant. Then she went on it again when she was about six years old. Both times ranked as nightmares in our saga -- terrible, terrible time, and the mild decrease in seizures did not outweigh the horrendous physical and emotional side effects for Sophie and our family.

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    2. Ugh, I'm sorry. We stepped into it with the modified Atkins diet -- sort of keto-lite.

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    3. I've looked into the modified Atkins diet, but I'm not sure. It's wonderful to hear that your child is getting relief.

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    4. Well, I started it based on a book from the library and it hasn't been awful. And any day without a seizure is a gift. Maybe try it? The diet therapies have improved with people connecting over the Internet. It would be different from ten years ago.

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  13. I don't know anything, but I send my love and a great bear hug. She looks beautiful, just angelic. I wish I could do more.

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  14. You must get so tired, Elizabeth. xo

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  15. JeZUZ... thats a lot of drugs. Im stumped in terms of the recommendations. All i can offer is a cyber hug and hope that all will be well with your little girl :(

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  16. I hate that we have so much science and technology and statistics that we can make corn with bug DNA and smash invisible particles together at light speed in a laboratory, but we can't (or won't) spend our talents and money on things like this. It is a fucking tragedy that so much of medicine and medical practice is trial and error, borne by the patients and their families. I will send light and love your way and let you know if I hear of any shamanistic healers in your area. I actually know one here in my area that travels to heal people (he is Laotian - a Hmong shaman that is the leader of all the Hmong shamans in the states - and doesn't speak English). He is an impressive presence in a room and nearing 75 years old with all the attendant wisdom, but I can't vouch for his results personally.

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  17. I always feel unentitled to comment since I don't have a blog of my own, but I love reading yours and couldn't help myself this time. My son, Jack, has been on a list of meds and treatments about 3/4 the length of Sophie's (he's only 4 though and not seizure free so watch out, we're gaining on you). We haven't tried Vimpat yet but we just weaned Clobazam and I wish we had done it sooner. Jack's seizures didn't get any worse and his mood, affect, muscle tone and respiratory condition have all improved dramatically. I'd definitely fo for that one!

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    1. Thanks for visiting and for your comment! Just so you don't get too cocky, Sophie was onall but the last three by the time she was six years old or so!

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  18. Just curious, does Sophie get a flu shot? We noticed that Sept - Dec is always a time when Nicholas's seizure activity seems to increase. Our Neuro was thinking either flu shot side effect or perhaps some seasonal effective disorder of sorts.

    Also, there was an interesting article written about the TRH hormone. Physicians have used it with success in treating children with infantile seizures with no harmful side effects. Nicholas's diagnosis causes him to be defficient in many hormones. Scientists have really just begun to explore the hormone/seizure connection. We were going to explore this TRH option but found some seizure relief using lamictal.Just a thought.

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    1. Hi, Lisa! No shots for this family! Sophie began seizing and was diagnosed with infantile spasms shortly after her initial vaccines. While we don't know for sure whether they were the cause of her disorder or just a catalyst, we have chosen to not vaccinate her or her brothers, in case there is a genetic component.

      Interesting, though, about the TRH hormone. I'd be interested in hearing more about that. Sophie's seizures, overall, certainly worsened during puberty and continue to plague her most in a cyclical fashion. She is too thin to have a period, but her cycles coincide with mine, so I know there's something correlative about hormones and seizures with her. It's incredible how LITTLE info there is out there, though -- Sophie is on a progesterone birth control, and I've seen a bit of help, but not a lot.

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