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Lamictal side effects
My nonverbal daughter, autism, epilepsy is titrating from 200( after 9 minutes seizure and one after in ambulance) to 300 XR brand name at 25 mg increase every week but seems especially sad, just no interest in doing simple things, like puzzle, wordsearch books.. She is low functioning on autism spectrum but just seems lifeless
No more seizures past week but if Lamictal for bipolar will she just get more depressed as dose goes up?
We had a cheery, happy engaged daughter, now not so
Also takes Seroquel and Buspar, has for years
After disaster with Zonisamide we hoped this drug would work .
She was on Dilantin for many years but always had to go to lab for levels, adjust the doses..
She can't talk but everyone sees the difference but doctors only want seizure control..
Thanks to all in this group !
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Thank you, yes, she's on Lactulose, Miralax, Colace .. too much..
Her behavior escalated after she went into status epilepticus three weeks ago, but has been seizure free since those seizures at 250 mg Lamictal
Her autism complicates so much as she's nonverbal roo so g i. pain can cause behavior too..
Not much sleep even with Melatonin and that makes matters worse
We're hanging in day to day and just hope she gets a break soon, from seizures and her g. i. issues.
Thank you for your support!!
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2 Reactions@minajo
It doesn't sound like the Lamictal is controlling her seizures, especially if she goes into status epilepticus. I also have a history of Status with long term comas. I hope they didn't have to put her into an induced coma to stop her seizures. Was this her first time having status seizures?
Have you mentioned to the doctor about changing, increasing the Lamictal dose or an adjunctive medicine?
Can your daughter communicate, perhaps in some type of distressed behaviour she is having drug side effects?
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2 Reactionswhile I was taking Vimpat, I had severe constipation. What helped me was a daily drink recommended by my family doctor: cole, dry prunes and papaya. It helped me a lot!
Chris (@santosha)
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3 ReactionsHi @minajo
Perhaps your daughter is having this aggressive behavior because she can not sleep well. As I mentioned in another post, insomnia was the worst side effect I had while taking Lamictal. I also became aggressive during the period of insomnia.
Chris (@santosha)
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2 ReactionsI want to try your concoction of prunes and papaya because I like variety and I always look for natural or organic remedies. Many thanks!
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3 ReactionsYes, big issue with autism is sleep problems.. rhen sleep deprivation can lead to seizures.. she has been on 10 mg Melatonin, last year a dr put her on Trazadone which caused things to get worse.. had to get her off ..
Course being 48 now perimenopause , soon menopause.. she is on Prednisone ..
Her care home provider is against the marijuana rx as is the neuro..
Her autism/ neuro dr recently discharged her as he wasn't happy we took her off Dilantin( many problems with blood levels, seizures after 10 years on it) said it caused the status epilepticus so now isn't even addressing her autism..
So now i just have her epileptologist who ordered zonisanide, ( caused severe constipation, impaction) now lamictal.. but she won't handle the behavior meds.. really quite a mess and so i can only hooe lamictal will work!
Thank you for all your support..
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2 ReactionsMinajo,
I agree with @jakedduck1, Lamictal does not seem to be working well for her, unfortunately.
There are still many doctors who are against medical cannabis because they have not studied the endocannabinoid system. Epidiolex (pure CBD) is a medication that was approved by the FDA.
It seems that the medications your daughter has been and is on are bringing her more harm than benefits, just like it happened to me. If I would be in your situation, I would check for a second opinion. This friend whose son is autistic and also has epilepsy went to Mayo Clinic for a second opinion, having Epidiolex been prescribed to her son. It changed her life as well as her son's life. I have sent you her e-mail in a private message in case you are willing to exchange experiences with her.
Chris (@santosha)
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2 ReactionsMy daughter is at her target dose 300 mg lamictal and we will try to get lab level done this Monday, she will need Ativan as of course the side effects known for drug insomnia and aggressiveness are present
Her epileptologist states we knew we'd have issues but to keep going rill target dose
She suggested Klonipin for sleep but daughter did awful on Trazadone..
Shes on 10 melatonin but i wonder if Valerian root could be added? Some supplement instead of another addictive controlled med? 😵💫
She wouldn't get in bed last night, care home has rules!
She fell asleep in big comfy chair, i said let her just get sleep, no matter where
Sometimes my. hands tied with carehome as with the medical cannabis, they are against it.. oh my..
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1 ReactionHello all.. my nonverbal daughter who had sigmoidectomy 6 months ago is slowly recuperating but had a high Lamotrigine level end of December while in hospital being treated for post op ileus and went from 300 mg XR Lamictal to 250 but after discharge her epileptologist reduced to 200mg? No reason given
Daughter had more issues, then her behavior escalated, stopped taking meds until finally her Lamictal given at 8p..
Then a 5 minute seizure end of march so dose upped to 300 again but level toxic so now on 275 but still drug given at 8p and she has sleepless nights, refuses to go to bedroom, naps on chair..
Is the evening dosing causing?
Anyone know if genotyping would help with determining best seizure meds?
She's a profound autistic and being nonverbal very ,very challenging!
Thanks
Lisa's mom,
Hi, @minajo - that is indeed very challenging to work with your profound autistic and nonverbal daughter on her treatment.
Since you were talking about issues with lamotrigine (Lamictal XR), I'm providing some Mayo Clinic information on this medication that may be helpful:
-Lamotrigine (oral route)
https://www.mayoclinic.org/drugs-supplements/lamotrigine-oral-route/description/drg-20067449
I'd also like to invite into this conversation @jakedduck1 @santosha @bruizersmom @21amy @lilomen1 who may have some input for you on whether the evening dosing of this medication may be leading to sleepless nights, refusing to go to bedroom and napping on a chair. They also may know whether genotyping could be helpful in determining the best seizure meds for your daughter.
What does your daughter's neurologist or epileptologist think about the medication challenges she's had? What does he or she think about whether genotyping might be helpful?
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