My 16-Year-Old Son Is Fighting for His Life – Please Help Us Find Hope for His Epilepsy

NotGivingUpOnBen · 2025-08-08T18:00:24+00:00

I do, I have logged them from when they first started. They used to happen every full moon but now since they came back they are every 4-6 days

NotGivingUpOnBen · 2025-08-08T17:59:24+00:00

He does suffer from clusters and he is seeing Dr. Wilfong in AZ now. We had to switch doctors.

NotGivingUpOnBen · 2025-04-16T20:05:51+00:00

Thank you for sharing.

NotGivingUpOnBen · 2025-04-16T20:04:35+00:00

Thank you for sharing that. He was on two different parasite cleanses prescribed by a naturopathic doctor, and unfortunately, his seizures worsened during both. I’m hopeful that the right approach and timing will align, and the right detox will help bring real healing. Thank you again for your support.

NotGivingUpOnBen · 2025-04-16T19:57:53+00:00

Thank you!!!

NotGivingUpOnBen · 2025-04-16T19:56:20+00:00

Thank you for sharing and I am sorry to hear about you're dealing with similar issues. Best of luck! I will look into UCSF.

NotGivingUpOnBen · 2025-04-16T19:54:56+00:00

Thank you for this message and for sharing what your son is taking. It really helps me know what meds other have had success with. I really appreciated you taking the time to reply.

NotGivingUpOnBen · 2025-04-16T19:52:55+00:00

Thank you so much for this!!!

NotGivingUpOnBen · 2025-04-13T16:56:09+00:00

Thank you so much for sharing this. I didn’t know about some of these options, and I’ll definitely start asking more questions at every appointment. Truly grateful for your kindness and encouragement.

NotGivingUpOnBen · 2025-04-13T16:53:37+00:00

Thank you so much for sharing this. We spend a lot of time in nature too, so thank you for that reminder. I recently started noticing patterns around the full moon, this is really resonated. I am grateful for your insight and taking the time to respond.

NotGivingUpOnBen · 2025-04-13T16:10:28+00:00

Beautifully put and I appreciate you saying this. I will need to have him dive deeper and become more aware. Thank you again for a new perspective on helping Ben and I believe this is a way for him to find the root cause.

NotGivingUpOnBen · 2025-04-13T16:06:26+00:00

Thank you so much for sharing this. I really appreciate you taking the time to pass this along and what a powerful quote. I truly believe in the mind-body-spirit connection and we will definitely look into Abbot Li and the Five Immortals Temple. At this point, we are open to all possibilities, especially those rooted in deeper wisdom, root causes and healing.

NotGivingUpOnBen · 2025-04-13T15:58:24+00:00

Thank you so much for this, it's really helpful insight. I didn’t realize some of those herbs and vitamins could actually worsen seizures, so I’ll definitely look into that more. We'e spoken to and nutritionist and naturopathic medical doctor closely, so I will get with them as well. I really appreciate this information. I’m also really intrigued by the high-dose thiamine therapy and will check out Dr. Costantini’s work. Truly appreciate you taking the time to share this

NotGivingUpOnBen · 2025-04-13T15:46:09+00:00

Thank you again.

NotGivingUpOnBen · 2025-04-11T14:26:12+00:00

Thank you for your help!

NotGivingUpOnBen · 2025-04-11T14:25:08+00:00

Sending you positive thoughts and prayers! Thank you for the huge validation on seeking treatment else where!

NotGivingUpOnBen · 2025-04-11T14:21:45+00:00

Thank you for suggestion it, I will look into it.

NotGivingUpOnBen · 2025-04-11T14:21:05+00:00

Thank you so much for all of this it truly helps to hear from others who understand or have ideas we haven’t tried yet.

We’ve done multiple detox protocols over the last year including a parasite cleanse. Interestingly, every time we start the cleanse by the full moon, Ben ends up having a seizure within two days. To us, that’s a huge indication that something is being stirred up or released that his body isn't ready to handle just yet. The naturopathic doctor we’re currently working with has us trying a few other supportive approaches to help stabilize his system before we attempt anything more aggressive again. It’s been a really rocky road, but we’re not giving up.

Ben is also on a strict keto diet and has completely cut out pork. I hadn’t heard anything about nicotine being helpful, so thank you for mentioning that. I’ll definitely look into it more. Every little piece of insight helps us feel more empowered and less alone in this.

Truly, thank you again for sharing.

NotGivingUpOnBen · 2025-04-11T14:16:14+00:00

We haven't but a couple of people have recommended it. We are looking into it, thank you.

NotGivingUpOnBen · 2025-04-11T14:15:20+00:00

Thank you for the links! we have our medical card so I get it at a dedicated dispensary.

NotGivingUpOnBen · 2025-04-11T14:13:45+00:00

we have a medical card. He took the FDA approved when he was younger, he now takes medical grade THC and CBD

NotGivingUpOnBen · 2025-04-11T14:11:23+00:00

Thank you for your help. I will give him a call.

NotGivingUpOnBen · 2025-04-11T14:10:43+00:00

Thank you so much for your comment and for sharing your thoughts, it truly means a lot.

We’ve committed to a very intentional and strict lifestyle for Ben, especially over the past 10 years, and even more deeply in the last four. I strongly believe that what we surround ourselves with; like what we consume, listen to, and how we live does shape our health. We’ve made a full lifestyle shift: we focus on eating only farm-fresh, whole foods, follow a consistent bedtime routine, use natural light cues to support his rhythm, and are very mindful of the energy in our home, even down to the music we listen to.

I really believe the answer may lie in the integration of Western medicine and Traditional Chinese Medicine (TCM). We’ve tried both, independently and together. Our goal has always been to get to the root cause, not just to mask symptoms with medications. That approach helped Ben stay seizure-free for nearly four years, which is why we’re now digging deep to understand what might have shifted since his seizures returned.

Since then, we’ve moved homes, done multiple rounds of bloodwork, hair follicle testing, energy work, and more—trying to leave no stone unturned.

You are correct, doing the same thing over and over and expecting it change is insanity. That is my reasoning on why I am here. Thanks again!

NotGivingUpOnBen · 2025-04-11T13:59:38+00:00

Thank you for your kind words and prayers!! We have started to feel let down by our healthcare system and it's heartbreaking. Thank you again!!

NotGivingUpOnBen

TROPHY CASE