u/Aromatic-Honey1623

Hello epilepsy warriors, I salute you all! My 13 year old son has epilepsy, generalized with absent seizures which now are just tonic clonics. He was diagnosed last January so almost a year and a half fighting this. He was started on Keppra and it was a nightmare, he turned into a zombie and it made his seizures worse. 5 tonic clonics in 3 weeks. Switched to Depakote and it was like a miracle drug, went 11 months seizure free and then had a breakthrough so we upped the Depakote. After 3 months, he had another seizure and so we added Vimpat. A few days after starting the Vimpat, he got super sick, high fevers for 4 days. Finally got over the virus, and a few days after getting sick, while on just 50 mg daily of Vimpat(not a therapeutic dose?) as well as the Depakote, he had another seizure. I was told after the seizure by Neuro that it was due to being sick and puberty so they upped the Vimpat to 50 mg twice daily. My question is, is he actually failing the drugs? The Depakote was perfect for a year until it wasn’t. And apparently it’s too early to tell if Vimpat is working. Keppra was an epic fail and aggravated his seizures and now listed as an allergy. But Depakote was working and he is still on it, but it’s not quite as effective it seems. I’ve been beside myself with all this, he takes it more in stride, but I know it’s tough on him as he wants to be a normal teen and we try to treat him as such, just some extra precautions. Anyone give any insight? He failed Keppra, Depakote seems to be as effective now? Is he considered drug resistant? Neuro didn’t say anything but all my research says you fail 2 meds, you are drug resistant. Please help, is there a light at the end of this?

So for background…my 13 year old has epilepsy and was diagnosed at 12 after having a tonic clonic at school. We did all the testing, MRI good, EEG abnormal, overnight Video EEG he had 7 absent seizures. Was put on Keppra and it was a nightmare, had 5 tonic clonics in 3 weeks. Switched to Depakote and it was like a miracle. 11 months without a seizure and then had one…increased Depakote and then 3 months later, another tonic clonic. They added Vimpat and 3 days later he got really sick, for 4 days he had a fever and sore throat and even the viral rash. Went to ER twice because I was afraid he was having an allergic reaction to Vimpat and they said to just give the 50 mg at night to see. Well he got over his illness and 3 days after the virus went, he had another seizure. So neurologist said to up the Vimpat to 50 mg at morning and night instead of just night time dose. I’m really scared guys. His last EEG in March was normal after 2 abnormal ones so I thought we were getting things under control, Dr even said he was stable and we could possibly get off meds after 2 years seizure free. Now it feels we are going backwards. The Neuro said the seizure was probably due to recent illness and puberty. I’ve read that 50 mg of Vimpat isn’t even a therapeutic dose and he was only on it a week and a half, but now I’m afraid those are worsening seizures, then again, I guess I haven’t really “tested” them out properly yet. The thing is, he was doing great on Depakote before, I thought we were beating this. Now I’m afraid he is drug resistant or maybe this is just because of puberty and recent illness last week. I am wracked with worry and barely functioning. All his seizures are within an hour of waking up so I take him to work with me before he goes to school, but I’m a nervous wreck every day. He recovers well after the seizures, but my heart is breaking for him. Any stories of hope would be appreciated because I’m losing hope fast and need to stay strong. Thanks in advance, you all on Reddit suffering with this are real rockstars, my heart goes out to you all❤️

So for context….my son is 13 and has epilepsy so has to take Depakote for seizures which requires regular cbc. Before treatment, his wbc was good, after starting Depakote, his wbc dropped to 3.9. They did a repeat a few weeks later and again within normal limits. They had to up his meds slightly and did labs again and wbc 3.9 again, and then a month later it’s still 3.9 and now we have a referral to hematology. All the other labs are good, although the wbc diff results are a little mixed with the low wbc, once his lymphocytes were a bit high, this last time his monocytes were a little high but that makes sense with a lower overall wbc, I guess they are trying to overcompensate? I don’t know, I’m freaking out. He never gets sick but this last week he got a virus and was pretty sick with fever and sore throat for a few days. I took him to ER twice and they assured me it’s just a virus and now he is back to normal. But the 3.9 wbc is constantly lingering in my mind. I’ve been so anxious over this, waiting to get hematologist appointment set up. I’m telling myself it’s due to the Depakote, but I’m so worried I don’t eat or sleep. Anyone have any insight? I would rather not go into this blindly on what could be causing this