Drug Resistant Epilepsy

@laurabeck
I am sorry to hear your family is going through such a challenging ordeal. I wonder if the Zyrtec could be lowering his seizure threshold?
Although probably a long shot perhaps Zarontin might help. Has he tried Depakote? Zarontin got rid of my absences but they were typical absences.
Take care,
Jake

@jakedduck1 Thank you for your reply. Does zyrtec or other antihistamines often lower seizure threshold? He’s tried both depakote and zarontin.

Something that has recently helped me very substantially reduce the frequency of my partial onsets is to spread my meds out over the day more, taking the same amounts of the same meds except instead of 3 times a day, I take them 5 times a day. Including right before bed and right when awakening.

Tracking my partial onset seizers for 8+ years, listing date, time and anything I could possibly think of that may be a common trigger (food, drink, activities, etc.), I struggled and could not find anything in common. Then, after a lengthy, mathematical study of over 300 entries, I found that 75% of the seizures happened on average, 8 hours after my last medication intake

Of course talking with your seizure specialist first before taking any action. I would hope not, but if your Son's are first thing in the morning, maybe an alarm during the night?

I learned with simple googling the half life of my meds, which is the time after taking it that 1/2 of the medicine has left your system. IE: Keppra's half life is 6-8 hours. I was only taking it twice a day (12 hours apart) I then found out that 75% of it was out of my system at twelve hours, which was the time I was taking my next dose.

Understand that a full belly of food can slow the absorption of a medication. I also learned about the effective length of my meds, which is different than the half life.

I found out that keeping as consistent as possible level of your meds in your system throughout the day (and night?) is important.

Good luck to you and your son.

@laurabeck
Although zyretec has been known to cause seizures I believe it is quite rare, especially when compared to older antihistamines. But rare things do happen. Perhaps I am overly suspicious. I consider most everything suspect.
My last Neurologist refused to prescribe generic drugs for his seizure patients whenever possible. He spent an hour explaining and drawing charts and graphs explaining why. I wish I could remember all that he told me. He switched me to Carbatrol, a brand name extented release Carbamazepine. My seizures stopped. He told me to always get refills using the same manufacturer and not to switch from brand to generic or vice versa. Stanford University did a study on the above finding switching manufacturers increased seizure risk.
Take care,
Jake

@noshit45678

There is always the chance your son’s condition will get better wiith age! I suppose the drugs he’s currently he’s taking will be different from mine (currently 45 years old) and the types of medication seem so different between countries. 1 thing about generic medication is they are cheaper because the amount of active ingredient in them is lower with a higher % of “fillers” for a similar mg. Although the amount may not seem significant, but for a person’s body it may be. And of course the amount will also differ between manufacturers and a body may also be used to a brand.

Hi @laurabeck
Welcome to our community at Mayo Clinic Connect!
I'm so sorry to hear about the challenges your son and your family have been going through with his seizures.
I agree with @jakedduck1 and @louissc regarding the efficacy of generic medication, especially for epilepsy. Last February, I changed my CBD manufacturer — known as Epidiolex in the US — and my seizures stopped. Like your son, I have difficult-to-control seizures, having been diagnosed with temporal lobe epilepsy with mesial sclerosis.
As to @noshit45678's comment, some people might have a fast metabolism, which can make a difference in the efficacy of medications. This is, by the way, something my neurologist wants to check at our next appointment later this month. Perhaps it would be worth bringing that up at your son's next appointment with his doctor.
Has your son's doctor considered prescribing Epidiolex for him? Is he being treated by an epileptologist or a neurologist with extensive experience in epilepsy?
I'm also tagging @ambo2006 and @rchllmorgan, whose experience with asbsence seizure management might be of interest to you.
I hope you find a great deal of support here in our community!
Chris

@santosha
We started him on Charolette’s Web original formula CBD but are only a week in. How long did it take for you to notice a difference with CBD?