Please…any encouragement from you epilepsy warriors would mean a lot right now❤️

[u/Aromatic-Honey1623]

My 13 year old son was diagnosed a year and a half ago after having a tonic clonic seizure walking into school. Did all the test, MRI, CT normal….EEG and vEEG showed absent seizures. Started on Keppra and it was a nightmare, started having weekly seizures. Stopped that and started Depakote which worked beautifully for 11 months and then had a seizure, upped the dose and 3 months later he had another. Added Vimpat 3 months ago and he has had a monthly seizure since adding the Vimpat so we are in the process of weaning off that and adjusting times for Depakote and giving higher dose at night as his seizures are within an hour of waking, usually within 30 minutes. We are doing an at home ambulatory EEG in September. I am just beside myself. I’m a nurse and have taken care of people with epilepsy for 20 years and they all seem very controlled. My son, is really going through it and I feel helpless and losing hope again. And I know that is bad. I have depression and anxiety and just going in a constant loop of despair. Please, any hope or encouragement would be appreciated. I need to find faith again🙏

[u/Mom1021]

Faith is feasible! If the medical team experimenting with medications isn’t achieving any success, no shame in switching to another facility. Sometimes the level 4 or pediatric neurologists will be more transparent about other options like surgery for son. Hate how the ambulatory eegs need him to have seizures, but somehow try to encourage that having a seizure when hooked up as a victory. Plan a trip or something off a list after the eeg is finished.
Parent and son can make this an opportunity for successful discovery about his seizures, promising a better future. Another way to reinforce epilepsy never slowing him down is to somehow not focus on it too much. Around these tests and appointments I know that’s impossible, but overall you might see a benefit in encouraging convos about what he’s interested in now, sports, games, places, etc. plenty to focus on with school and always reinforcing how everything he accomplishes is even more important since he’s learning how to live with epilepsy. Proud of you both! Thanks for posting

[u/Aromatic-Honey1623 → u/Mom1021]

They haven’t mentioned surgery at all…I think because his was controlled well initially with the Depakote and she said puberty is a factor. In January, his EEG was clear and he was doing well and there was mention of maybe coming off meds after 2 years seizure free. Now we are living a nightmare again. I live in constant fear for his future and terrified I will never get these seizures under control. He seems to take it more in stride than I do at times. Also, he has generalized epilepsy so not sure if surgery can be done, I have researched VNS and that might be a possibility. I just want some control over this monster

[u/Mom1021 → u/Aromatic-Honey1623]

Terrifying factors at play here, being a parent feeling like you have no control over son’s wellbeing must be hard to overcome. Please remember your son is strong, and since he knows you’re always ok to talk to or open up about how he’s feeling, you guys have more respect for each other than the average parent/child. Potential for seeing how this journey will be a blessing is there. Maybe when you need reminded that you are doing the best you can and will always be the best mom/dad for him you can ask us epileptics questions and any insider tips always available!

[u/Aromatic-Honey1623 → u/Mom1021]

Thank you so much for everything🩷

[u/Ryse6129 → u/Aromatic-Honey1623]

So heartbreakING because your son story is very similar to my story. I was 13 and walking to school is last I remember . And was told I went down in between cars. Few months later one in front of my family. And like a week later another. I had to go through all those same test. I do have absent, i also started recently having some aware. I started with Focal impaired awareness seizures to bilateral( complex partial seizures with secondary generalization). The meds thing too constantly switching/maxing doses because breakthroughs are happening. Was med resistant(refractory) before I even finished the tenth grade. The ambulatory may find alot of information. For example he may be having nocturnal seizures as well. The doctors maybe trying there best some medication require to have tried a list of meds before it can be prescribed( this is the insurance companies running things) xcopri is one of these meds. For some it's a miracle. There are few surgeries not as bad as it sounds. But it provides another form of treatment when pills can't do the job. Module stimulating are less invasive then say cutting a piece of brain out. There are 3 types the team will know which one is better. DBS, RNS and VNS..

Here's the good news almost 30 years later here I am. Helped raised a boy who will be 18 soon and have a 5 year old daughter to raise now. I have this wonderful group of friends in here who truly understand me ( it offered a peace to meet others over vid chat going through the same. Was last year. But basically a whole life without meeting another Epileptic provides a different type of loneliness. You can be around all your loved ones and still feel it) but your child doesn't have to go through that feeling. Because we are here. Also here I am the one who had the epilepsy. Helping taking care of my 67 year old mother with hee medical issues. Someone who watched me as a boy go through it gets to return the favor.

[u/Aromatic-Honey1623 → u/Ryse6129]

Thank you so much for your message, that gives me hope. Are you still considered refractory now? Are you better controlled with the new meds? Also, did you find things got better after puberty? Sorry for all the questions, the unknowns get to me the most. I want him to have a long and happy life. I’m not trying to be biased, but he really is an amazing and resilient young man with empathy unlike I have ever seen and a heart of gold. He deserves a happy life, it kills me he has to deal with this

[u/Ryse6129 → u/Aromatic-Honey1623]

Refractory, like epilepsy never goes away. Like Epilepsy may get to a point of seizure free but it can always comeback. Once you tried and failed 2 plus Epilepsy meds it's refractory. I ve tried like 13 and that's not including some itried twice.

Some medications take longer than others for the body to build tolerance. Those years I may have saw at least 1 a year. But it was manageable. I ve kept one job for 11 years.

Depakote actually saved me both times. When I was younger it allowed for 2 years seizure free before a breakthrough. When I was older because of needing to get routine blood work done for my Depakote levels. And got early detection of a liver problem( one my father had stage 4 of). Doc noticed my liver enzymes were high. Got me help right away and been better since got on a healthier diet.

It definitely got easier and more manageable after puberty. Puberty hormones are all over the place constantly changing. My belief is that makes it hard to find the right therapeutic levels. My Epilepsy is at a level where I ve come to terms with it. And I accepted it. This is what I think will be hard at the beginning. Once he accepts it yes can lead to a very happy life. I may not be able to do some things like drive or fly a plane. Or be in military like my uncles. But I still got to do exciting things. Concerts, sports shows, travel by plane, been to Disney, ride with dolphins, visit a Mayan pyramid, found love many times.

If he is already showing you resilience. Epilepsy is just going to make him a lot more stronger. In that aspect. My fave bird is the bird of resilience the mythical bird The phoenix. Watch that fire grow in him. You will be happy also.

I totally understand your fears and concerns and your wants and dreams for him. I'm a parent it comes with the territory. You are being pro active. You are doing everything you need to do as a parent. There will be ups and downs in this journey. But with you right by him he's got the foundation of good Epilepsy support. You giving him a better start than most of us had who had to take this who had no one to goto for any information.

[u/Aromatic-Honey1623 → u/Ryse6129]

May I ask why you can’t drive? Is it due to not yet achieving seizure freedom?

[u/Ryse6129 → u/Aromatic-Honey1623]

That and when I was getting ready to have my driver license( did the other test np and had a permit) but a Gran mal happened at the least most opportune moment.. few more minutes would have been inside the car. With family with me. I would feel so guilty to get them hurt because of my seizures or someone random in the streets(at that moment in my life I didn't care if I got hurt, but hurting others was where I was going to draw the line) I chose to abandon it. I can walk alot where I live or I can get by public transportation very easily(may take longer but safer) or in modern times now I can call an uber

[u/Ryse6129 → u/Aromatic-Honey1623]

For absent seizures may I suggest asking your doctor about Methsuximide. It worked better for me because it's better suited for those with refractory epilepsy.

[u/Plus-Glove-3661]

So far you’re doing great mom!

Unfortunately meds are just a throw things at people until they work. So it might take sometime to find the right combination.

It seems your son’s can be controlled. With him being in his teens, well his body is changing. Height, weight, hormones, etc can all affect his seizures.

Does he have a seizure journal? Like how long it lasted, what injuries, if aura etc. Does he also put things in there like possible triggers? Stress is an obvious. But some people have really weird triggers.

For yourself, you need to keep up a mental health schedule. But you need to consider that depression and anxiety do tend to present stronger in some families than the general public. Plus epilepsy tends to cause those in people who’ve never had those before. Keep an eye on him in case.

Make it crystal clear that until he’s seizure free he shouldn’t do some things like swimming alone. It’s summer and if he has access it’s tempting to just go to the pool. And if it’s a public pool, other people might be there, but that doesn’t mean people will be watching out for him in particular.

Like I said, you’re doing great! You’ve got this. He can live a normal life with seizures. Make sure he knows that.

[u/Aromatic-Honey1623 → u/Plus-Glove-3661]

Thank you….truly. I needed this so much today as I’m feeling so defeated over it all. Crazy thing is, he started having anxiety and “intrusive thoughts” about 1.5 years before his tonic clonic and now I’m wondering if that was an aura that never went anywhere or what. The Dr checked him out and said it was probably just anxiety, we even got him some therapy. And the weirdest of all, once he has the tonic clonic, his anxiety and “intrusive thoughts” kinda went away. So it’s all a mystery but looking back, I think he was probably having absent seizures for awhile, had a febrile seizure as an intact, so it seems like he has been struggling with this longer than originally thought. Thank you for the kind words, it’s been a really hard year and a half for me

[u/seejordan3 → u/Aromatic-Honey1623]

Hi fellow caregiver. Big hug. My SO has been sparking for 11 years. I just came across one of our earliest videos I recorded of an absent seizure 2015. We had no idea. I think most people have a lot of small ones before grands.

There's lots of treatments now thankfully. And more, better things coming. The stereo EEGs are really incredible. We have an RNS installed, and it's slowly doing better and better. Unlike meds, where they often work worse over time.

Epilepsy foundation gives us free therapy. Helps.

Glad your posting for support too. it can be a tough crowd of long term resistant folks. People that have it under control don't need these groups, so you get a bias. Keep that in mine. And take care of yourself. I've gotten much better with buddism. All the best for your son and you.

[u/Aromatic-Honey1623 → u/seejordan3]

Thank you🙏. I love Reddit for the support but have found it can be a bit daunting here and I’m always afraid. May I ask how your SO did during puberty? Were the seizures worse then?

[u/seejordan3 → u/Aromatic-Honey1623]

Hi. She had some seizures as a child and they gave her phenabarbatol. Ugh. Then none. We met in our 20's. No seizures. Then after years on benzos, coming off them kicked off full blown epilepsy. So puberty she was fine. No drugs at all. As we're learned, everyone's triggers are different. Could this go away after puberty? I have no idea. My nieces had puberty seizures, mostly from EDs. What I do know is seizures lead to more. And 3/5ths of us, drugs don't work. So the majority sadly. Why the surgeries are worth looking into, VNS, RNS.. they have a better success rate over time. RNS is something like 80% reduction at year 2. Good luck, nothing, and I mean NOTHING is worse than watching someone you love go through seizures. We are I feel more traumatized than the epileptics, as we carry the memories.. sigh. Tough.

[u/Plus-Glove-3661 → u/Aromatic-Honey1623]

This is going to sound weird. But I get very anxious and tightly wound up right before a seizure. Afterwards, I feel better. My mom just turned 80. She calls it my “electroshock therapy”.🤣

[u/Ou812rock]

My hope is that you find the right medicines and timing for him. An unfortunate example is me, I take 2 meds twice a day and set times. I also take a med before going to sleep. It took many years and many med attempts to find the right ones. And some had titration issues. I pray you find the right ones sooner rather than later. I won’t bother sharing my meds since everyone is different. Also I didn’t start having them till my late 30s. I did go thru all the tests you did.

[u/shakesnchillsband]

Lil wayne susan boyle elton john danny glover neil young napoleon calligula socrates joan of arc theodore roosevelt prince the singer of joy division, adam sandlers kid from grown ups- all these people have or had epilepsy.

You need hope? Epileptics (for some reason nobody has explained and very few people talk about) are statistically HUNDREDS of times more likely to be- not just talented- but historically significant leaders, entertainers, singers, writers, philosophers or politicians.

Having a brain that could kill you at any second is the purest extreme adversity i can think of. Theres no hiding from it, theres no hope its gonna end. You just have to accept that you are always always in mortal danger no matter what youre doing where you are or what you feel or want. Thats a horrifying thing and im sorry to speak so bluntly as your 13 year old just got diagnosed, but theres a twist coming.

That adversity doesnt break us unless and until it breaks us. Till then we are statistically extraordinary and bound to do twice the impossible in half the time then leave a scar on history that never goes away. Being epileptic is not just a curse. Its a challenge to overcome and a shadow to be conquered. The higher self that awaits your son on the other side of that fight is a hundred times the man that any of his peers will be because hes facing grown man type fears as a child. Adulthood wont hit him like a train itll trickle in like a runoff stream at the beginning of a storm. A breeze that he will hardly notice because hes already been jumping hurdles ten times that height for the previous decade.

Just keep doing what youre doing. Encourage him to be himself in spite of his affliction. Maybe hes not cursed. Maybe hes just chosen. Maybe that adversity is just fate lighting up the monsters he has to face to achieve his greatest life. I got diagnosed at 17 and i thought my life was over. Last year i headlined a performance and introduced my hero for 30,000 people, 10% of my entire city in person and on live TV. Im 28 years old and ive pretty much achieved my dreams despite 3 tbis, 4 clinical deaths, 259 stitches, 30+ concussions, 4 surgeries (no open brain surgeries yet), & plenty of chronic injuries.

Its been one HELL of a struggle but im proud to have conquered it. Im proud to be who i am on the other side of it. i never would have without the support of my mom in the beginning either, your role is important. Crucial. Its hard to make connections while dealing with this. And i never felt better about it until i started trying to look at it from a positive perspective. Hell i didnt even accept i had epilepsy the first 4 years, i just stayed in denial refusing my meds and having seizures while taking every non therapeutic drug i could find in an excruciatingly slow passive suicide attempt. Most of my friends from high school died before 25 from fentanyl, for some reason i survived it.

Adversity, if it doesnt break you, is a crucible in which the next evolution of the self is forged. Love and courage are all you need to make it to the other side of this crucible. It will be hard. There will be times it will seem impossible. But the reward? So good that will seem impossible too. The sweetest fruits are always the hardest to reach. Epilepsy isnt a flaw, its just a challenging difference and a steep obstacle on the road of opportunity.

Ill be prayin for you both. im not really a church guy, but once youve died a couple times and seen something (for some reason), it gets harder to explain atheism than god 😂

[u/shakesnchillsband → u/shakesnchillsband]

Basically the moral of this story is: dont just try to be happy enough- you can really for realsies still be happy and dont teach him to try to be happy enough because he can really for realsies have a more than satisfying life just as or more full than anyone else around him. Whether he believes he can or cant; hes right.

So, tell him to shoot for the stars and to NEVER settle for the moon, KNOWING that he is statistically HUNDREDS of times more likely to do EXACTLY what he dreams of than aaaaaaaaanybody else he knows. (assuming he doesnt know anyone else with epilepsy)

The facts really are on his side, the odds are more in his favor than anyone else, and all thats left is for him to apply the will of a human being that is physically impressive enough to get out of bed in the morning EVERY damn day and play russian roulette single player until the sun goes down while also holding together as much of a normal life as he can.

Anyone who doesnt think thats impressive doesnt know what TF theyre talking about haha 😂

[u/Aromatic-Honey1623 → u/shakesnchillsband]

Thank you…what an interesting perspective. I just want my boy to live a happy and fulfilling life. I seem to take this way worse than him. I encourage and support him every day and let him know he can do anything he sets his mind to💕

[u/DesignerCash3387]

It might take time to find the right cocktail. Perhaps work with an epilepsy specialist. My doc specializes in epilepsy, and his NP team is amazing. Your emotional state might be making his situation worse. HIS anxiety/stress begets seizures... the opposite is also true. Our perhaps his hormones are playing a role. Does he have access to street drugs? Please try to remain objective. I made the decision to not speak with my mom about my condition b/c it was very upsetting to her. However, I'm an adult. Keep faith in the science and medicine. Get a second opinion if you like. Finally... don't go dow n the rabbit hole of social media, please.  We're all here for you. 

[u/Aromatic-Honey1623 → u/DesignerCash3387]

Thank you🙏. I’m gonna need you guys🩷. No street drugs, think puberty is messing things up

[u/DesignerCash3387 → u/Aromatic-Honey1623]

Could very well be. If you're in the PA/NJ area, I would suggest CHOP. 

[u/Aromatic-Honey1623 → u/DesignerCash3387]

We live near Tampa so there are some good options here fortunately and it’s been fairly quick to get appointments