Update on disabled daughter.. correct meds?

Posted by minajo @minajo, Jan 6 12:37pm

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

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

Chris Gautier OR Santosha | @santosha | Jan 7 6:39am

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: https://www.youtube.com/watch?v=ufqegE-TUzQ&list=PLpIN29lx9vI4gCPJUBimnMjoK8x10lHed&index=1
All my best to you and your daughter!
Chris (@santosha)

tonyde | @tonyde | Jan 8 7:51am

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.

Chris Gautier OR Santosha | @santosha | 6 days ago

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).

tonyde | @tonyde | 6 days ago

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.

Chris Gautier OR Santosha | @santosha | 5 days ago

@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)