tag:blogger.com,1999:blog-4863417462909147257.post3704866594739061232..comments2024-01-01T20:33:52.554-08:00Comments on a moon, worn as if it had been a shell: The SIT-U-AH-SEE-ONElizabethhttp://www.blogger.com/profile/03313726816776097840noreply@blogger.comBlogger41125tag:blogger.com,1999:blog-4863417462909147257.post-56206425313258249092015-10-02T09:32:39.296-07:002015-10-02T09:32:39.296-07:00yes, Evie's hives would come and go, come and ...yes, Evie's hives would come and go, come and go but with no particular pattern<br />she'd been on both meds for years so the neurologist didn't think it was the meds<br />the allergist informed us that he himself had a case of hives that lasted YEARS and<br />then disappeared<br />Anonymoushttps://www.blogger.com/profile/15683437688952537872noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-25414795089877069292015-10-01T14:22:33.310-07:002015-10-01T14:22:33.310-07:00When Annika had a reaction to Trileptal, it happen...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.<br /><br />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. <br /><br />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 :(Kira Gartnerhttps://www.blogger.com/profile/10424999643261534893noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-46377396884732334082015-10-01T01:53:14.824-07:002015-10-01T01:53:14.824-07:00Goodness, Elizabeth, this seems so much responsibi...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).Francescahttps://www.blogger.com/profile/01316361078052416731noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-65204028545745260752015-09-30T08:57:30.533-07:002015-09-30T08:57:30.533-07:00Thanks, Ilga, for your input. Curious that they...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.Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-8422670075419620272015-09-30T08:49:08.632-07:002015-09-30T08:49:08.632-07:00Hi Elizabeth,
My daughter, Evie is on Vimpat and L...Hi Elizabeth,<br />My daughter, Evie is on Vimpat and Lamictal XR and I've recently added CBD oil.<br />She has had a couple of bouts of hives, lasting a few weeks but the last time they persisted something like 9 months.<br />The allergist recommended zyrtec and allegra or their equivalent. I'd try cutting back every now and then, but<br />end up giving her the zyrtec until one day they disappeared as mysteriously as they arrived.<br />The allergist suggested it was a reaction or overreaction to a virus. I guess that is the latest thinking<br />about hives in the allergy community. I wish you and Sophie well. One day I do wish to meet you in <br />person and help you change the sheets.<br />--ilgaAnonymoushttps://www.blogger.com/profile/15683437688952537872noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-61905353145423752152015-09-30T02:17:46.081-07:002015-09-30T02:17:46.081-07:00Thank you for this additional bit of edification. ...Thank you for this additional bit of edification. I had no idea that CBD affects benzo levels.The Sound of the Silenthttps://www.blogger.com/profile/09669598042879486343noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-49085094863260171952015-09-29T20:40:25.575-07:002015-09-29T20:40:25.575-07:00Thank you, Mary Lou!Thank you, Mary Lou!Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-66242629828611693312015-09-29T20:40:09.017-07:002015-09-29T20:40:09.017-07:00Of course we will not be weaning the Onfi until we...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.Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-41189630750425701112015-09-29T20:38:37.301-07:002015-09-29T20:38:37.301-07:00I'm so glad that you got off some of the benzo...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!Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-66412907192188545952015-09-29T20:37:13.326-07:002015-09-29T20:37:13.326-07:00Thank you, Leslie -- you've always been such a...Thank you, Leslie -- you've always been such a steadfast internet friend, and I appreciate that.Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-3510625909688527092015-09-29T20:36:34.453-07:002015-09-29T20:36:34.453-07:00Thank you, Laura. Thank you, Laura. Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-77758131758359490522015-09-29T20:36:04.831-07:002015-09-29T20:36:04.831-07:00I'm so glad that you're feeling the woo-wo...I'm so glad that you're feeling the woo-woo because I trust you with my gut as well!Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-85345406877970467352015-09-29T20:35:31.312-07:002015-09-29T20:35:31.312-07:00I love a witness and feel great comfort from ya...I love a witness and feel great comfort from ya'll.Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-88822046117299794742015-09-29T20:35:09.131-07:002015-09-29T20:35:09.131-07:00Yes -- Sophie was on Lamictal for many, many years...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!Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-84369351901351929412015-09-29T20:33:44.263-07:002015-09-29T20:33:44.263-07:00Thank you, Carrie! And didn't you used to use ...Thank you, Carrie! And didn't you used to use an acronym for that? NECBMAT.Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-1605584435435553892015-09-29T20:32:53.301-07:002015-09-29T20:32:53.301-07:00Not sure if you've been reading Stephen Brill&...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.Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-82616617562712679432015-09-29T20:32:00.130-07:002015-09-29T20:32:00.130-07:00Isn't that the truth? Twenty years ago, when S...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!Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-44169443801961314022015-09-29T20:31:27.320-07:002015-09-29T20:31:27.320-07:00I hate thinking of your little one suffering and h...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.Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-77061036183383590062015-09-29T20:30:12.175-07:002015-09-29T20:30:12.175-07:00Thank you, dear woman.Thank you, dear woman.Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-46768848760960433872015-09-29T20:29:47.989-07:002015-09-29T20:29:47.989-07:00Having witnesses sustains me, so I am grateful.Having witnesses sustains me, so I am grateful.Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-43326516681989041622015-09-29T20:29:25.551-07:002015-09-29T20:29:25.551-07:00Well, thank you. I love being called a chica for s...Well, thank you. I love being called a chica for sure.Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-89738724727945785772015-09-29T20:28:58.089-07:002015-09-29T20:28:58.089-07:00Thank you, Susan. You are a dear.Thank you, Susan. You are a dear.Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-35426897474712373372015-09-29T20:28:37.523-07:002015-09-29T20:28:37.523-07:00Thanks, king. Sophie has a homeopath and is on a c...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.Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-86656944253674343212015-09-29T13:36:02.369-07:002015-09-29T13:36:02.369-07:00Thinking of you Elizabeth. I hope hope hope it all...Thinking of you Elizabeth. I hope hope hope it all goes well💜💜💜MaryLou Connollyhttps://www.blogger.com/profile/10487084753413140281noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-12266401561006149342015-09-29T13:17:27.374-07:002015-09-29T13:17:27.374-07:00Gah. Rightfully afraid, I think, and I don't ...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) <br /><br />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. <br /><br />How long would do you expect it to take at the pace you have set to wean from Vimpat and Onfi? <br /><br />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. Anonymoushttps://www.blogger.com/profile/07636670946994161261noreply@blogger.com