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09-08-2006, 05:16 PM | #1 | ||
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My four-year-old son, whose seizures only occur at night, has been on Lamictal for almost 2 months now. We weened him onto this drug and off of Keppra during this time. He is currently on 50 mg of Lamictal in the morning and 50 mg before bed (and he weights 52 lbs). We have noticed (since increasing his bedtime dosage) that he is very shakey at night. It doesn't seem seizure related because the shakiness occurs at any point during the night when he is changing body position (for example, turning over to get comfortable). It is like a severe tremulousness and is very distubing. It also worsens as the night progresses. Any thoughts on what could cause this? At this point, our neurologist has suggested increasing the dosage of Lamictal, but I am leary. Thanks in advance for your thoughts!
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09-08-2006, 06:43 PM | #2 | ||
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Hey, Jen! Great to see you were able to post. As I told you today, we haven't seen this with Langan. I am hoping some of the other AED experts here have some ideas.
Give the little man a hug for me!!
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Wendy, mom to Langan, the love of my life, born 7/19/02. Global delays, intractable seizures, mystery girl. VNS implanted 2/10/06, now on small dose of lamictal and fighting for seizure control, and wife to Jon, the other love of my life!! |
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09-09-2006, 12:47 PM | #3 | ||
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Dear Jaev,
Lamictal can cause tremor, and increase unwanted movement, like tremors, spasms, tics, etc. You could try this link, and search down the page for "tremor". http://www.rxlist.com/cgi/generic/lamotrigine_ad.htm In situations with med problems that are not dangerous or acute, we have asked the neuro about pulling back to a previous dose and see if the side effect improves, (don't know if your son's seizures can handle that without adding on other meds, etc....). I would be really leary too of increasing it. This side effect was very severe for my child, who had to be sedated while the lamictal was weaned very quickly. His situation is different because he has previous history that made this problem more likely, but I would agree with you about being nervous. In one increase during the titration we went from okay, to really bad problems. Last edited by WonderBoy; 09-09-2006 at 01:01 PM. |
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09-09-2006, 01:57 PM | #4 | ||
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I looked at WonderBoy's site, as well as looking at one of the documents on the FDA site. Tremors is definitely a side effect. From what I can tell, your son is on a low dose (the one document I looked at < http://www.fda.gov/cder/ogd/rld/20241s14.PDF > said normal maintenance for patients 2 - 12 is 5mg/kg/day to 15mg/kg/day. If I calculated correctly, for a 52lb boy, that's 118mg per day at the 5mg/kg/day rate, and you're doing 100mg/day. Table 9, page 25, as listed on the page.)
I'm not sure what kind of advice to give you. I don't know if increasing Lamictal will decrease the tremors, but since it sounds like Lamictal is the reason for the tremors, increasing Lamictal seems kind of contra-indicated. I suppose you weren't getting the seizure control you wanted at the lower dose, and that's why you were increasing the nighttime dose, before this all happened. (((Hugs))) Seizures suck. And playing med change games is no fun either.
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Mom to Samantha (10), Claire (9), and Tom (7). Tom is developmentally delayed with poor vision, lousy fine motor skills and epilepsy. His seizures are pretty well controlled through diet - dairy-free, gluten-free, rice-free, and coconut-free. |
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09-09-2006, 10:32 PM | #5 | ||
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Forgot to add... TRUST YOUR GUT! My neuro has laughed at my theories on numerous occassions. (But he is willing to work with me and does what I want, so I love him anyway.) As a result of BrainTalk and my gut, Tom has been drug free since a year ago July. In that time, he's had 5 seizures. While I'm hoping for better this year, I'm not complaining.
If you feel Lamictal is responsible for these tremors and you're leary of increasing it even more... go with your gut.
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Mom to Samantha (10), Claire (9), and Tom (7). Tom is developmentally delayed with poor vision, lousy fine motor skills and epilepsy. His seizures are pretty well controlled through diet - dairy-free, gluten-free, rice-free, and coconut-free. |
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09-09-2006, 10:49 PM | #6 | ||
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Thanks for the info! After searching online, it really is a side effect that is experienced by a good number of people. I am wondering if the Lamictal was increased too quickly... our neuro doubled the nightly dose ahead of schedule due to a seizure in which we had to give our son Diastat. I agree and think pulling back on the dosage makes more sense than increasing it if we don't get some relief with these tremors some time very soon. When we have upped meds in the past in reaction to an especially bad seizure the outcome has not been great to say the least. Really hate making a guinea pig out of my kid... UGH!
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09-09-2006, 10:52 PM | #7 | ||
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I replied prior to reading your additional comment, RathyKAy.
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09-09-2006, 10:59 PM | #8 | ||
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I replied prior to reading your last post, Rathy Kay. I've second guessed my gut before thinking it could just be coincidental, but you are absolutely right. Good reminder!
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09-10-2006, 07:27 PM | #9 | ||
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Jen,
I know I mentioned this to you but wanted to throw it out there for the parents who have had experience with it. You mentioned to me that he doesn't have these tremors during the day even though the dose is the same as the night dose. Anyone have any idea why that would be? Langan is on a higher dose at night than during the day, so it would make sense if we were seeing it with the higher dose but I don't get seeing it when the only variable that's different is the time. Could it be a lower seizure threshold at night or something? Experts?? (((hugs))) PS Feel free to check in on our September roll call and introduce yourself and the little man. I know everyone will be excited to have you join the "family" here!
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Wendy, mom to Langan, the love of my life, born 7/19/02. Global delays, intractable seizures, mystery girl. VNS implanted 2/10/06, now on small dose of lamictal and fighting for seizure control, and wife to Jon, the other love of my life!! |
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09-10-2006, 07:52 PM | #10 | ||
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I did mean to write about the timing. This is my take on it - the lower seizure threshold at night. Jen, you probably don't know, but Tom started with simple partial seizures. Dairy caused them to generalize - in his case he "switched" from simple partials to myoclonics. We removed dairy, and his seizures are back to simple partials (and we're not having that many of them, versus the daily myoclonics until the meds were doing their stuff). Anyway, traditionally, myoclonics are bad during either the dropping off to sleep stage and / or the waking up stage. I remember reading you should remain in bed after awaking for 1/2 hour or so to avoid them - gradual wakening. Of course, Tom didn't believe in that. (And, in the beginning, we noticed the jerks when Trileptal <which does NOT treat myoclonics> peaked for the morning dose.) Anyway, myoclonics are associated with sleep transitions, among other things.
And going along with all this, if he normally has nocturnal seizures, I would think that fits in with the tremors. Anyway, just my opinion.
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Mom to Samantha (10), Claire (9), and Tom (7). Tom is developmentally delayed with poor vision, lousy fine motor skills and epilepsy. His seizures are pretty well controlled through diet - dairy-free, gluten-free, rice-free, and coconut-free. |
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