Any drug besides depakote for generalized juvenile epilepsy?

Hello,

My son, also 22 today has been taking 1000mgDR for 14 years. He now struggles with the same issues. He is more tired then most but nothing that keeps him down. In my opinion when we tried adding the antidepressants and ADHD meds the tiredness became much worse. We have tried stratera for ADHD and Prozac for OCD to try to calm the thoughts in his mind hoping it would help him pay attention better. Neither of which worked, but maybe didn't use long enough because he was always too tired. If you don't mind me asking how much Depakote does your son take? and do the other meds help with ADHD? We want to change as well but are too afraid. Trying to learn anything new is always a challenge and I always find myself calling and texting to remind him of different things.

Hi, so glad to find a mom who can relate! Although I’m sorry your son also struggles w these issues. Mine takes 500 twice per day… so 1000 per day. He’s been on fluoxetine nearly 2 yrs, because of a major depression episode… we have reduced it recently by 1/3 and he got really depressed again (or maybe he it was his normal mid semester panic and overwhelm because he missed so many classes and assignments and passing looked hopeless 😩). He is swearing that the Concerta is helping him focus… he said yest “mom, I wrote 6 pages today!” …. It gave me a glimpse of how hard his normal days must be because 6 pages doesn’t seem like a lot to accomplish 🤦‍♀️🤷🏼‍♀️). He will literally sleep til 3:30 pm if we don’t continually harass him to get up. He’s super sweet and not defiant at all, really agreeable just cannot seem to make his body move. Doctors have not been helpful about getting off since he’s alive. But quality of life is low. He’s only happy when he’s drinking and hanging out with friends late night. God bless these young men and guide their doctors! I just don’t know how to advocate for him w his docs, he doesn’t want to change depakote because he’s afraid of seizure. He has one per year and it seems to be when he forgets several doses… in the ER his valproic acid levels are low. Do u have doc get labs on vitamin D and vitamin B? His psychiatrist finally checked those levels this year … no one ever has in all the 10 yrs we have been dealing w this!! Everyone need vitamin D, especially depressed kids on anti seizure drugs

Yes, definitely sounds all too familiar and as parents we just want to flip a switch for them to make it all better:( My son takes both his depakote tabs at night we changed that up years ago. He was doing the same as you. He didn't go the college route instead is doing an apprenticeship, which he struggles with focus and memory which causes anxiety. Still enjoys the drinking with friends on the weekends as well. We go at the end of the month to a new doctor. I haven't gone with him to his appointments probably since he could drive because all they do is check his cognitive functions and give an order for bloodwork. I have a slue of questions I am going to ask. I have the same overall question as you any other newer meds anyone can suggest?

I hope you find good advice at the doctor this time! How did they check cognitive function? All they ever do for my sons check up is check muscle strength, look at his eye movement and look at how his hands tremor. I even have to beg for a blood test since I know he forgets some of his doses I want to see valproic acid level. I hope you will have them check vitamin D and B levels. His pediatric Neuro gave him L-Carnitine supplement since dep is hard in liver… he wouldn’t take it. 🤦‍♀️ best of luck, plz let me know how it goes

I dealt with Grand and Petite Malls 34yrs. They were found to be caused by hormonal problems being that they happened only during the whole week of menstruation. Started out having 5-6 daily 3-4 days a week. Those went on for the whole 34 years. Just by chance while lunching I heard a man speaking to another man. I was sitting close enough to overhear him saying that his medical profession was in Neurology! Instantly I went over, introduced myself and explained my problems , with his approval, of course! He referred me to another Neurologist (Trauma Dr.) I then made appointment went to see him. He glued all those wires around my head and pulled me off immediately Dilantin and Phenobarbital, which had no positive effects, anyway. When I woke up he had informed me that I suffered 5 seizures. He then proceeded to tell me that the seizures I had suffered from were the opposite of what the normal procedures were. I don’t remember the exact details but it was the opposite way that occurred with others. Either starting on one side of the head and ending up on the opposite side or the opposite direction of other.
Immediately he put me on Ativan. When/if I would have an aura immediately I took the pill! The medication, to me, was a miracle!
I have not suffered any seizures for over 17 years! Up until, approximately, a year or so ago I did experience still monthly, auras. Those had become lighter and lighter and lesser and lesser!
I no longer have those auras enough to even think about!
Hopefully I helped you with your problem!
I, finally, was able to drive! Exciting! Those seizures began at the age of 18 and never stopped for 34 years! Now at the age of 67, I’ve been living a fabulous life with no problems or even regrets!
Good luck and
God Bless you, always
Marie Dyer

Thanks for your reply. Glad you had that encounter with that doctor. Funny how we meet certain people in our lives by coincidence. I have that same concern as well... is he taking meds that he doesn't necessarily need. My son was diagnosed in the 4th grade. He was playing a video game. He has photosensitive epilepsy. A lot of stuff I read says that it is possible that if you are diagnosed with this at a pediatric age that you could possibly grow out of it in your mid 20s. Scared to take the risk. I am definitely going to ask about the ativan since I see it treats a lot of different symptoms then just seizures. Its nice you can take it as needed although my son never recalled having any type of warning. I often wonder if he not had been into video games so much when he was little would we have ever known he had epilepsy?

Thanks, yes they did all those tests as well as asked him silly questions. That's one of the reasons they told him to take both 500mg at night because he was having those tremors. My son has a friend that he went to school with that also has epilepsy. She was taken off Depakote just recently due to liver damage. So of course that is now another concern. UGH!

Hi Marie, Good Morning (@aproudrebel)
Thank you so much for sharing this with the group. It gives us new hopes and ways to handle epilepsy, for sure. God bless you!
I am very happy for you !!!!!
I have also met someone by coincidence that helped me so much in my treatment with epilepsy. And I met her here in our group!
This was in 2021 when I started to prepare myself for surgery to remove my lesion on the temporal lobe on the left side (hippocampus). I got the contact of a mother whose son went through the same experience, sharing with me the contact of their neurosurgeon. I contacted this neurosurgeon to have a second opinion and he was totally against this surgery, saying I would have more losses than benefits as my lesion is in the hippocampus on the left side (I would lose much memory and other cognitive skills). He advised me to try more medications, recommending me my current epileptologist. I have so canceled the surgery and started treatment based on CBD, a gluten-free diet and hatha yoga, improving and feeling better every year. I am very happy to have found this epileptologist who really does the best for his patients. I am also very thankful to this mother who shared the contact of this neurosurgeon with me and changed my life. God bless her!!!!
It is today clear to me that surgery was recommended as it was a better source of profit for the doctor and hospital. Sad to see that this is happening in our current world. But thankfully we still have good and ethical doctors around that respect and follow the oath "first do no harm". BTW, there is a movie called First Do No Harm with Meryl Streep on YouTube. It tells the story of Charlie from the Charlie Foundation who could cure his epilepsy after the keto diet.
Here is the link to the movie: https://www.youtube.com/watch?v=xY9ZMGK5Hbs&t=17s
If medications do not work for you, there are many alternatives before surgery that are not always explored such as diets, hormonal control, and helmets. Last year I have been to a neuroscientist recommended by my epileptologist, who told me about helmets that if used daily for 30 minutes could help control seizures. Still a possibility I am considering if it is necessary after my SIBO (small intestinal bacterial overgrowth) treatment.
To all of you, do not lose hope and if you do not feel comfortable with the treatment your current doctor is recommending, check for a second opinion or even a third opinion. I have been to 12 doctors, before finding my current epileptologist.
Santosha

Thank you! So happy for u! What is your treatment based on cbd? Brand/dose? Hard to know a good source

Hi @sgboster123
Thank YOU!!!
CBD is a component of medical cannabis.
I first started treatment with medical cannabis with a very low ratio of THC, but because of quality issues of this medication, my doctor has decided to switch to medical cannabis 100% CBD. Yesterday, I posted this experience in another discussion in our group (eating epilepsy if I am not mistaken), but somehow it does not appear to me. I will check later again and if necessary, rewrite my post.
The medical cannabis I first took was from ABRACE, the first association here in Brazil allowed to produce medical cannabis medications. The 100% CBD I take nowadays is from Prati Donaduzzi, a serious Brazilian pharma industry.
How to know it is a good source? The best is through your doctor. I am not pharmaceutical to be able to evaluate such things. I thankfully have found a doctor that respects much his patients and does his best for them,
Santosha