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Adult disabled nonverbal autistic/epileptic daughter: Correct meds?
Epilepsy & Seizures | Last Active: 3 days ago | Replies (16)Comment receiving replies
Hello Chris? Lisa's mom here, she's the nonverbal autistic , epileptic..
So after long recovery from sigmoidectomy last year( at one point before surgery had two 9 minute seizures back to back.. asked ER Drs if the seizures from volvolus and probably yes their answers
So now we've discovered a hemorrhoid but in office her b/p 90/40 so EKG and she's borderline for qt prolongation syndrome which I've read the diagnosis of epilepsy can be erroneously made with qt etc.. qt issue found in hospital last year, only heart murmur years ago
Also saw Seroquel can cause this qt
We see cardiologist next month , she hasn't had any seizures since July, thank the Lord and still on Lamictal xr 275 daily
So any opinions ? She has gone through so much being nonverbal, almost 50, menopause ( on progestin ) now and of course bum can hurt..
Not doing surgery for that right now
Thanks Chris and all!
Replies to "Hello Chris? Lisa's mom here, she's the nonverbal autistic , epileptic.. So after long recovery from..."
@minajo
Hi Maureen!
Thank you for sharing this update on Lisa.
It's wonderful news that she's been seizure-free since July! That must be such a relief after everything she's been through with the sigmoidectomy and those back-to-back seizures.
I'm glad you have a cardiology appointment scheduled next month to address the QT prolongation and her low blood pressure. I know very little about QT prolongation.
You might find it helpful to connect with others who have experience with this condition at dedicated heart groups here on Connect, such as these two:
- Heart & Blood Health Support Group
https://connect.mayoclinic.org/group/heart-blood-vessel-conditions/
- Heart Rhythm Conditions
https://connect.mayoclinic.org/group/heart-rhythm-conditions/
You're navigating so many complex medical challenges for Lisa, and it's clear how dedicated you are to her care. Wishing you both the best with the upcoming cardiology appointment.
Chris
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Hi, @minajo - I moved your post here to where you've spoken with Chris @santosha and where others know your daughter's history. This way they can hear your latest update and offer their input. If you would not mind returning to this discussion when you have an update to post related to your daughter's epilepsy, I'm sure others here who know you and some of your/your daughter's story will welcome the update and offer input as they can.
Having a sigmoidectomy is major surgery. I can imagine the recovery would be long. Hope she is okay from that. I also have read that a seizure over 5 minutes, like the two 9-minute ones you mentioned your daughter had back-to-back, are considered long seizures. Glad to hear she's not had any seizures since July and you will see a cardiologist coming up.
How is your daughter tolerating the lamictal? Has she experienced any side effects?