Monday, September 28, 2015

The SIT-U-AH-SEE-ON



If I were French, I might call our current situation with Sophie -- the hives, the CBD, the THC, the Vimpat and the Onfi -- LA  SIT U AH SEE ON. There's something about the supercilious accent that helps me cut through the fear and cope. Writing it down here also helps me to impose some order, however illusionary or delusionary because, let's face it, after twenty years, the main thing I know is that refractory epilepsy is a big, dark hole and no one, absolutely no one, knows what the hell is going on.*

I had a conversation with The Neurologist this afternoon about Sophie's hives, and she suggested that I cut Sophie's dose of Vimpat in half. My initial response is Whoa. Any of you regular readers know that weaning anti-epileptic drugs, like weaning drugs for depression or anxiety, is serious business, and that the slower you do it, the better. I also carry around a veritable salt lick when it comes to neurologists' opinions and directives about drugs -- the titration schedules, the weaning schedules and the side effects. It's been my experience that neurologists, in general, over-prescribe, ramp up too quickly, take down too quickly and dismiss side effects. That being said, I see the hives, I have the tiniest gut feeling that they might be related to the Vimpat, and therefore, the Vimpat must go. I really like and respect The Neurologist, and she made the call.  That being said, what if it isn't the Vimpat? Ripping off the Vimpat quickly will inevitably cause some withdrawal, including increased seizures and discomfort, but not taking it away could cause some serious shit. I've gotten good advice today from my comrades in seizurology and from my dearest friends. Christy of Calvin's Story (if you haven't read her writing, yet, you need to), said the most profound thing to me after she'd listened to LA SIT U AH SEE ON.

She told me that she has learned to never make a decision based on fear.

We chewed on that for some minutes, laughing at times over the impossibility of it all, how if we really sat down and thought about it, we'd have some kind of fear over all this shit we've faced and continue to face raising our children. We also acknowledged how our gut feelings are generally right -- maybe not even generally, but always. The trouble comes when you don't have a real gut feeling or it's occluded by -- yes -- fear.

So, here's the thing. I'm plain afraid of weaning Vimpat so quickly. I'm afraid that Sophie will go into status or will go insane. I'm afraid not to wean Vimpat because of the possibility of a serious allergic reaction or something brewing. While Vimpat has never really helped her, she's been on it for over seven years, so I'm banking on its relative uselessness as a seizure medicine as far as taking her off it. I have THC and CBD to help during withdrawal, and I have Diastat in the cupboard (currently expired because we haven't had to use it once in the nearly two years she's been on CBD) if there's a real emergency. On the plus side, we were going to wean Vimpat eventually, as soon as we had finished the Onfi wean.

When I lay out my fears and allow my gut to breathe, I think the Vimpat has to go. LA SIT U AH SEE On calls for it.

I think.










*If you have any ideas about what's going on or have a SIT U AH SEE ON of your own to share, please feel free to do so in the comments, especially if you're acquainted with epilepsy and drugs. I'm all ears -- fear and ears.

42 comments:

  1. Such hard choices with such potential consequences. You are one brave chica, one of my heroes. xo

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    1. Well, thank you. I love being called a chica for sure.

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  2. I love the advice, never make a decision based on fear. I love it so much. And I get how that is pretty impossible for you at this time. Witnessing your struggle, and your strength. Honoring your intuition.

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    1. Having witnesses sustains me, so I am grateful.

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  3. Fear sucks. Trust the message on the pillows and trust your gut. Wishing the best for Sophie and for you.

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  4. I just had to pause our keppra wean indefinitely after a bad seizure and intubation last week. I went much, much slower than the neuro suggested, just a tiny .01 mL every two weeks and it is still just too hard on her. Of course the neuro who I do like and respect said its just coincidence keppra doesn't cause withdrawals. I said that's funny because every time I pause the wean she goes seizure free. Why are they so unwilling to agree there are withdrawal symptoms? I don't get it. She suggested I let her grow out of her dose. I hate the thought of her being on it that long but I guess I have no choice.

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    1. I hate thinking of your little one suffering and hope it all calms down soon. I can't remember whether you're using CBD and/or THC. They have both helped us to wean Sophie gradually from the Onfi, but it's been hard anyway. Ugh.

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  5. Also, love that advice. I wish I would have had that in my repertoire when they were pushing all these damn drugs on her at 5 months old.

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    1. Isn't that the truth? Twenty years ago, when Sophie was five months old, I did exactly what "they" told me, and look where it got me!

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  6. This post so makes not want to put my daughter with ASD on Risperdal. If you'll excuse the syntax. Doctors aren't interested in individuals, just research results, as if there weren't people attached to that research on the other end.

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    1. Not sure if you've been reading Stephen Brill's expose on Risperdal and Johnson and Johnson, but you have to if you're considering that drug for your child. It's shocking and chilling.

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  7. "It's been my experience that neurologists, in general, over-prescribe, ramp up too quickly, take down too quickly and dismiss side effects." Agree 100%. Consider, if it's possible, a good homeopathic remedy to help during the wean. Something that takes out some of the sharper edges of withdrawal. It might keep her from going into any hard reactions.

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    1. Thanks, king. Sophie has a homeopath and is on a constitutional remedy. We will be using THC to help with the weaning -- it's working effectively with the Onfi wean, so I'm hoping it will help with the Vimpat.

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  8. i have no advice. i'm just part of your quiet witness circle, holding hands out here, hoping for the best for you and sophie. parenthetically, tho, i am a profound believer in gut feelings with our kids. especially when those messages insist, push through the fear.

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  9. What Iloka said. That, and I love the LOVE pillows. Not enough can be made about them.

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    1. Thank you, Carrie! And didn't you used to use an acronym for that? NECBMAT.

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  10. We stopped lamictal immediately after t. developed major rash and had to go to er. initially pediatrician thought it was scarlet fever - we were hopeful that it was scarlet fever and not stevens johnson syndrome. in what world are parents happy about scarlet fever? when the alternative is stevens johnson, which is what the real dx was, next day in ER. A friend who works at major hospital advised me with any skin condition requiring ER visits, to always request dermatology be involved.Here's hoping for a soft landing for you and S., she looks content xo -jennifer d.

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    1. Yes -- Sophie was on Lamictal for many, many years when she was younger and thankfully never developed "the Lamictal rash." I so understand that you would rather have scarlet fever than a drug rash, and I'm sure that it's good advice to ask for a dermatologist if an ER visit is necessary. Hopefully, there'll be no ER visits in our future!

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  11. I have no advice or wise words, just wanted to join susan in the witness circle. Wishing good things for you and Sophie.

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    1. I love a witness and feel great comfort from ya'll.

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  12. Your mother-instincts are one of your superpowers. Trust them. I suspect you'll discover that one scenario has fear at its center and the other one has fear lurking at the edges. The edge fear is the outside noise, wherever you feel fire or calm at the center is what you truly know. Sorry to sound so woo-woo, but I'm feeling it this morning. Too bad you don't have any French chocolates to go with la situacion. Sending love.

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    1. I'm so glad that you're feeling the woo-woo because I trust you with my gut as well!

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  13. I'm with Susan, with Mel, and Kario.
    Wanting you to know how far your words reach, even in less fraught situations, "never make a decision based on fear" is what this mother needed to hear today. Holding you in my thoughts.

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  14. No advice. Just here, with the others, to offer my presence, thoughts and prayers.

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    1. Thank you, Leslie -- you've always been such a steadfast internet friend, and I appreciate that.

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  15. As you know, Elizabeth, we were in a very similar situation recently. We brought C. to the E.R., lethargic and, we presumed, dehydrated. After the tests, she was declared somewhat dehydrated, and was given IV fluids, but the doctors felt that didn't entirely explain her lethargy and weakness. The neurologist thought the drugs might be to blame. even though none of the three was new. In fact, we were in the process of weaning off the oldest one, benzo, which C. has been on for about 13 years.
    Anyway, the neurologist told us to further lower the benzo pretty drastically. (a drop that would have taken us three weeks at our previous weaning pace.) She also advised us to lower the cannabis somewhat.
    My hunch was that neither had played a role in her lethargy but the hubby and I are pretty obedient patients-parents so we decided to lower as instructed.
    She did subsequently have a few more seizures than usual but that actually began with the fluid IV, even before we administered the lower doses.
    And after a couple of days she settled back to her "normal" - with the added bonus of being closer to our goal: eliminating the benzo.
    There doesn't seem to be any rhyme or reason to our daughter's seizure vagaries.
    So, here's my wish to you:
    That you'll be pleasantly surprised when you lower the Vimpat, that the hives will disappear, Sophie will be rid of a chunk of that harmful drug and you will even see some improvement in her functioning.
    (P.S. I've since raised the cannabis back to its previous dose and, needless to say, C. isn't lethargic from it.)

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    1. I'm so glad that you got off some of the benzo. I'm sure you know that benzo levels can go up dramatically with CBD on board. Sophie's Onfi level is quite high and she is lethargic every now and then, but we've now got to concentrate on the Vimpat wean and hold off on taking off any more Onfi. God, these drugs!

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    2. Thank you for this additional bit of edification. I had no idea that CBD affects benzo levels.

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  16. Gah. Rightfully afraid, I think, and I don't think the neurologist really knows what's what here. No "recipe" to follow with examples and stats, for sure. You are literally flying by the seat of your pants (would love for you to come up with a photo of that expression--your the best at coming up with that)

    Given that your gut feeling is that the Vimpat is responsible for the hives, bolstered by the neurologist's response, maybe a moratorium on the Onfi wean, start a Vimpat wean and see what the results are both with the hives and other reactions. I'll be hoping that there are no problems with that move, and that the hives do subside.

    How long would do you expect it to take at the pace you have set to wean from Vimpat and Onfi?

    These doctors should be a shamed of themselves not have a pacing and monitoring system in place for weaning of these meds. Once it was clear that the Vimpat added nothing more than another med that had to be taken, weaning from it should have started. The same with any of these nasty drugs.

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    1. Of course we will not be weaning the Onfi until we've straightened out this Vimpat/hives situation. It's been over two months since the last Onfi wean, so the results will be clear. I agree with your thoughts in the last paragraph of your comment -- that's not the way things work in Neuro/Seizure Land, though.

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  17. Thinking of you Elizabeth. I hope hope hope it all goes well๐Ÿ’œ๐Ÿ’œ๐Ÿ’œ

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  18. Hi Elizabeth,
    My daughter, Evie is on Vimpat and Lamictal XR and I've recently added CBD oil.
    She has had a couple of bouts of hives, lasting a few weeks but the last time they persisted something like 9 months.
    The allergist recommended zyrtec and allegra or their equivalent. I'd try cutting back every now and then, but
    end up giving her the zyrtec until one day they disappeared as mysteriously as they arrived.
    The allergist suggested it was a reaction or overreaction to a virus. I guess that is the latest thinking
    about hives in the allergy community. I wish you and Sophie well. One day I do wish to meet you in
    person and help you change the sheets.
    --ilga

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    1. Thanks, Ilga, for your input. Curious that they'd attribute constant hives to a virus when both Vimpat and Lamictal are notorious for them. Did the hives appear and disappear? Sophie's appear in the first hour after taking her meds and then disappear hours later.

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    2. yes, Evie's hives would come and go, come and go but with no particular pattern
      she'd been on both meds for years so the neurologist didn't think it was the meds
      the allergist informed us that he himself had a case of hives that lasted YEARS and
      then disappeared

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  19. Goodness, Elizabeth, this seems so much responsibility all on your shoulders! I do hope you have someone you share it with (no, not a neurologist).

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  20. When Annika had a reaction to Trileptal, it happened just one week after she started it, and she was head to toe hives, so it was clearly a medication allergy. So scary to pull off of it (we stopped it immediately, and it was a few days before we could start something else) but at least the decision was clear. Your situation is much more difficult and I know I would struggle with it as well.

    Just to make your thinking more complicated, I have had bouts over the years with "idiopathic hives" i.e. hives for no apparent reason. I did a bunch of allergy testing, and nothing showed up - it was very frustrating and I really wanted a "reason" but there really wasn't one. I am allergic to many different antibiotics, and my guess is that my body has decided that "getting hives" is a reasonable reaction to illness or stress. The hives came and went for no reason for more than 6 months, and were sometimes quite severe, and then just disappeared and have not returned. So this is also something that bodies do.

    My advice for what it's worth - trust your instincts and cut the Vimpat! Good luck. Seizures suck no matter what the source of them is :(

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