Connect
← Return to Adult disabled nonverbal autistic/epileptic daughter: Correct meds?
Discussion
Adult disabled nonverbal autistic/epileptic daughter: Correct meds?
Epilepsy & Seizures | Last Active: Nov 20, 2025 | Replies (18)Comment receiving replies
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!
Replies to "To all those who follow this mom's journey with my 49 yr old , nonverbal, profound..."
@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
@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.
@minajo I Am SO Sorry To Hear About The Side-Effects Your Daughter Is Experiencing! Trust Me On This One… All Of The Meds Have Side-Effects And We Are All Different!!! So, Look Up The Meds She Is On And Read EVERY SINGLE POSSIBLE SIDE EFFECT!!! I Know Personally.. Following My Brain Surgery I Went Thru Every Single One Ever Created With RARE Side-Effects From Some And Common Side Effects From Others Following A Long Term Use, But Mine Started On The Third Day!!! It Ended Up With Me Back On Zonisamide (Despite The Side-Effects)… Although, I DECREASED MY DOSE.. Even Though The Dr Refused To.. Because Of The Side-Effects I Was Having (And Those Side-Effects Are No Longer Present!) Having Worked As A Nurse For 38 Years Prior To My Brain Surgery, I Learned There Are Times YOU Need To Learn About The Medicine And Make Some Decisions YOURSELF!!! It’s YOUR Daughter, NOT What You Are Being ‘Paid’ To Do! NO Disrespect Intended For All Medical Providers!!! I Am Just Worried About YOUR Daughter!
Connect
@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?