Support for all members of special needs families

The Writing on the Web

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An electrical cord has somehow twisted around his neck. He lies on his back, his arms pinned behind him underneath his convulsing body. His head is smashed at a right angle against the wall and there is so much froth in his throat he is choking on it. This is how I find my son.

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A quick online search yields a list of over 20 anticonvulsant/antiepileptic drugs on the market, and the long-term use of many of them can compromise the health of the liver. Take into account that some people need to take more than one of them (either because one seizure med is not enough or because they have both epilepsy and bipolar, and one anticonvulsant is not enough to keep mania in check), and it’s definitely cause for concern.

My son Nigel fits into the latter category. Some people with bipolar find that an anticonvulsant works to stabilize them, and others don’t. He needs an anticonvulsant to treat his epilepsy and lithium to control his mania. Both are hard on the liver, and not a day goes by that I don’t hope for another option, something that manages his disorders without compromising his physical health.

I have been considering the use of Charlotte’s Web for treatment of his seizures (for those unfamiliar, Charlotte’s Web is a high cannabidiol (CBD), low tetrahydrocannabinol (THC) Cannabis extract. It does not induce the high of recreational marijuana strains that are high In THC). In the past week I have talked with the parents of two different clients of mine about the success they’ve seen with their adult children taking this medication. There are many other parents who’ve experienced remarkable results with their children who have epilepsy. However, even with plenty of success stories, a position statement by the American Epilepsy Society maintains:

“The recent anecdotal reports of positive effects of the marijuana derivative cannabidiol for some individuals with treatment-resistant epilepsy give reason for hope. However, we must remember that these are only anecdotal reports, and robust scientific evidence for the use of marijuana is lacking… at present, the epilepsy community does not know if marijuana is a safe and effective treatment, nor do they know the long-term effects that marijuana will have on learning, memory and behavior, especially in infants and young children.”

The italics in that quote are my own; I find it ironic that AES would say this. Long-term seizure activity already negatively affects cognitive function, including learning, memory, and behavior, hence the urgency to prevent seizures from happening. And if pharmaceuticals aren’t effective, resulting in more seizures, wouldn’t we want to do something different? Yes, it’s true we don’t know the long-term effects of Charlotte’s Web. But when weighing the consequences of using an undeniably effective non-pharmaceutical treatment that we don’t know the long-term effects of versus the consequences of continued seizure activity – which we do know the long-term effects of – I’ll take the former.

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I don’t know how long this massive grand mal seizure had lasted. And I don’t want to think about what would have been the outcome if he hadn’t been at my house when it happened, or if at that moment I hadn’t gone upstairs to ask him something. He was unconscious and choking on his own bodily fluids. He would have died. He hadn’t had a seizure in over three years and I assumed that he would continue to be seizure-free. But the fact is that the effectiveness of a medication can diminish over time. And Nigel is living proof of that. Living.



11 thoughts on “The Writing on the Web”

  • Oh my God, that must have been so scary! I am all for the use of Charlotte’s Web for children. I remember a friend had a 6-year-old who was going through chemotherapy for brain tumors, and she lived in a state without medical marijuana in any form. She pointed out, “They’re injecting poison into my child’s veins. They’re giving her heavy drugs like oxy for the pain. She’s losing weight like crazy. She can’t even eat because of the sores in her mouth from the chemo… she just lets the food drool right out. She’s in horrible pain.” She was pointing out that Charlotte’s Web could help so much with the painful side effects of chemo, including giving her her appetite back. And no, we don’t really know the long term effects, but we DO know the long term effects of these other drugs that are being given to children. Also, we don’t really know the long term effects of drugs like Risperdal or Adderall on children, yet we give these to children all the time. If Charlotte’s Web and similar treatments can help children, then I’d say every parent has the right to decide whether to try it for their child.

  • I’m so sorry that Nigel had another seizure! That is such a horrible thing for you both to go through! 🙁 Hard to know what the “right thing” to do is in situations like this, but I know that whatever you decide will be done out of lots of love and research. You are an amazing mama and always do your very best for your boys! Love you guys, and am praying that this will be the last one you guys have to go through! XO

  • Oh no. So glad he was at home with you. I worry about this with Riley too. He has never had a grand mal seizure but something I worry about all the time.

    Take care. xoxo

  • Oh, Tanya. I am so sorry to hear about his and thoroughly commiserate, as you know. I do hope you’ll look further into using CBD and THC products. If you want to actually talk about any of it, please let me know. We are seeing such amazing success with both for Sophie, and I have a new job that has enabled me to learn much about the effects of cannabis on all kinds of disease, including bipolar.

  • Oh Tanya, the struggles just never end. I am so relieved he is living proof…I remember well when it first started happening and your livid descriptions of the fear. I continue to pray for you and him and a cure or help for all this nonsensical stuff we attempt to beat and win at in life. Many hugs and much love always.

  • I was going to point you towards Elizabeth Aquino, but I see you’re already connected! She’s a wealth of information on the topic! Love and light to you through this dark time.

  • Oh my gosh, Tanya! I’m so sorry to hear this, but hopeful you will find a remedy that works for Nigel. Lots of hugs and good wishes to you and Nigel. ❤️❤️

  • Tanya,
    My thoughts and prayers go out to you and Nigel. Please keep us posted about any new knowledge, experience, and research. I wonder about the connection between bi-polar and epilepsy. I’ve been diagnosed Bi-polar, but to date haven’t needed medication. Ironically, I’ve developed Neuropathy in my feet and the podiatrist has prescribed Gabapentin to be taken throughout the day. It most certainly takes away the burning. I’ve been told it is a drug developed as an epilepsy treatment.
    Best,
    ~Elaine

  • Oh, dear Tanya. I’m sending hugs and good wishes to you and Nigel, too. Thank you for sharing so much of your journey here on Life in the Different Lane. In the thick of you, you are making a difference. Truly.

  • Oh God, how terrifying. And worrying for the future too. I hope his doctors can get it under control? Long term epilepsy meds can also effect the bones, causing weaknesses etc, apparently. Or so a family member of mine has recently found out 🙁 xx

  • Oh my gosh, I am so sorry to hear he had a seizure after all these years but so thankful you were there. What a journey. I hope you and Nigel find a treatment that works and is less worrisome.
    xo

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