Adult disabled nonverbal autistic/epileptic daughter: Correct meds?

Hi @minajo
Have you tried pure CBD as a medication for your daughter? I myself take CBD as I am very sensitive to AEDs and synthetic medication since childhood.
Yesterday, I watched a very interesting webinar on CBD / medical cannabis. I share here the link with you:

Be careful with CBD, it can interact with some seizure medication effectiveness, increasing some, decreasing others. I don't doubt it's done the same with other medications. CBD is not the end all, be all drug it's being marketing as.

Hi @tonyde
Since childhood, I have been drug-resistant and very sensitive to medications. Before starting on CBD, I have tried 5 different AEDs, some did indeed control my seizures, but the side-effects were terrible and I became an ill person in my bed. So, I decided to try it.
Indeed, medical cannabis and CBD can interact with AEDs, as I have experienced it myself. The doctor at that time said that depending on the CBD dosage, it can even double the dosage of the AED you are taking. Thus, the transition process from an AED to CBD needs to be closely supervised by a doctor and should not done all at once for security reasons.
CBD did not end all my seizures, but it reduced them in quantity and severity. I gained my life quality back as the side-effects were far far lower than the ones I was having AEDs. I prefer to have some seizures and have a life, instead of being in my bed ill with no seizures. This is my personal opinion.
Unfortunately at the end of this year with high family stress related to severe health issues of my parents (we all know that stress is one of the major triggers to seizures), I had some severe seizures, and for security reasons, my doctor said he would have to reintroduce an AED and keep it for a while during this stressful period (my parents are at the end of their lives). My CBD dosage was kept together with this AED. The AED dosage I am taking right now is lower than the recommended pediatric dosage. Even so, I am having lots of unpleasant side-effects, affecting my life quality greatly. I hope that my doctor will reduce my dosage once more.
Chris (@santosha)
For those who are new to medical cannabis, CBD is just one ingredient of medical cannabis. Medical cannabis contains 60 ingredients, being CBD one of them. Full-spectrum medical cannabis with very low dosages of THC did control my seizures even better than pure CBD. However, due to quality issues of this medication available today on the market (which is also mentioned on the webinar I shared with you all), my doctor recommended switching to pure CBD from another pharma industry that has all certifications of quality (I live outside the US).

Very important advice, thank you for writing it. All of us need to keep in mind that drugs can impact one another, some positive, others negative and CBD is just another drugs.

@tonyde
Good Morning
I agree with you and as my current doctor also said: "CBD is another drug to treat epilepsy". But there is still a difference when compared to AEDs. AEDs are synthetic drugs while CBD is a natural one. For those who are very sensitive to synthetic drugs like me, it might be a good option.
Chris (@santosha)

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!

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?

@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

Thank you for your continued support and the links for me to look into.. I'm on epilepsy, g.i. and now I'll be getting help from cardiac members!
We're so fortunate to have such educated, caring " real" people out there to turn to!
Sincerely, Maureen , Lisa's mom

@minajo
My pleasure Maureen! I'm sorry I couldn't be more helpful with the cardiac questions. But I'm sure you'll connect with wonderful people in these groups who can offer better guidance.
Have a nice and peaceful weekend!
Chris