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Adult disabled nonverbal autistic/epileptic daughter: Correct meds?
My last year with my adult disabled nonverbal autistic/ epileptic daughter was very hard, 49 days at local hospital over 4 separate admissions , a diagnosis of sigmoid volvulus then a sigmoidectomy but no colostomy! Anastomosis... she had 2 nine minute seizures in summer, trauma center .. a surgeon said most likely triggered by the volvulus, still on lamictal xr 300 mg day
Last week, yes we spent Christmas till new years in hospital, she had toxic symptoms, ataxia, nystagmus, confused, dropped dose to 250 after level of 16.9,above high end normal range,
changing Seroquel dose to help behaviors, sleeplessness she is still manic
Trying to get a neuro/ psychiatrist on board
Has melatonin 6 mg at bedtime, no caffeine, good diet, etc
Always the concern for g. i. complications which happened with a ileus but resolved
So very painful to watch numerous procedures, too many days in hospital
She has supportive care home but it is a behavioral not medical, been there 15 years but we might have to upset her more and move her..
Maybe Seroquel ( 50 am, 100 pm not enough?
Thought lamictal would be good as its for bi polar and epilepsy
Oh dear, then 77 yr old mom got covid ladt week at that hospital, so many sickies
I fear for my daughter, she's profoundly autistic, so innocent and sweet when her brain not on fire.. thanks for all your support ! Happy 2025 Lisa's mom
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To all those who follow this mom's journey with my 49 yr old , nonverbal, profound autistic with epilepsy. ..
Year ago, after 4 hospitalizations and a sigmoidectomy after changing from Zonisamide( 25# wt gain in year) on Lamictal XR my daughter is still having distention in abdomen, no stools for 3 days and needs Miralax ( 1x day)and Lactulose( 3x day) to produce stools and now once again manic, confused..
Ammonia level, lamotrigine okay, but we get to point of almost calling 911 as she doesn't urinate for hours..
Had CT scan and after ER last week, ER DR consulted with g. i. and deemed only thing to do was use RX laxatives
Her long time use of Seroquel will be addressed by cardio as she was borderline for qt syndrome and Seroquel not drug of choice IF qt present on ekg( next week)
Wondering if it's the seizure med, antipsychotic, or?? She is so complex now and menopause a concern, almost 50,on progestin only as estrogen stopped due to high BP, now bp very low. But new HRT guidelines out,yikes!
I don't know how to copy this to neuro, gastro, women's health on Mayo site but I need a team of lots of opinions to get this daughter through day to day now..
Water, high fiber, some exercise in play but because of disability some things hard to implement
THANK YOU ALL
Ps Chris, can you copy for me?
Lisa's mom, Maureen thanks everyone!
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1 Reaction@minajo - hello! I moved your post here so you could continue chatting with Mayo Clinic Connect members who know you and your daughter's story.
Has your daughter's health care team been able to address some of your questions?
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1 Reaction@lisalucier
My daughter has a excellent, concerned PCP, her g.i. Dr has been replying quite in timely manner to my concerns, but harder to connect with neurologist as we are waiting on cardio appt to decide on her neuro meds, seizure and behavioral meds
It is really a matter of keeping close eye on symptoms, when it's time for ER.. day to day right now..thank you
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2 Reactions@minajo
Hi Maureen
Thank you so much for the update on Lisa!
I'm sorry to hear she's struggling with constipation. While it's relatively rare with Lamictal, it can definitely happen. I experienced this side effect with other AEDs, though not Lamictal. What helped me most was a recipe my family doctor gave me: kale, papaya, and prunes blended with water. Another thing that's been really helpful is golden flaxseed meal—I usually add a dessert spoonful to my yogurt. It might be worth a try!
I hope this helps!
Chris
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@minajo - just wanted to let you know that we also added this discussion to to additional groups related to the multiple conditions of the heart, GI, mental health, and menopause.
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2 ReactionsThank you! My daughter is just so complicated and being nonverbal I try to get answers from " neurotypical" people who can express side effects, etc to try to help her! This profound autism journey will be 50 years in January!!
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