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@louissc
I am so sorry to hear that you are still dealing with seizures daily. I know how difficult it is to find the right medications and/or balance that works for you. My son has Mesial Temporal Sclerosis and we had to go through several medication combinations until we got to Epidiolex. I'm not sure where you live. I am in Arizona. Is Epidiolex available where you are? For Keegan, the Lamactil helped but didn't do enough. When Keegan started Epidiolex (pure CBD), he was seizure free for 2 years. It really works well for him and has after an adjustment period, Keegan has no side effects from it. He had HORRIBLE side effects from other medications.
I have not heard of Briviact before. I hope that helps you. I think it's definitely worth a try, if you are still dealing with seizures daily. I completely understand the feeling of leaving your current neurologist. We were in the same position. I absolutely loved her. She had wanted Keegan to try Epidiolex but she couldn't prescribe it or give me a dosage. So, after much research and talking with my husband, we decided Mayo clinic was the best option and we're so glad we did.
I would love to hear more about your experience with NTUH. I think it's very interesting that they include traditional Chinese medicine, along with western medicine. I think it can be very benefical for some people. We spent a month in China and Keegan underwent Acupunture and we had amazing results, which I don't know we would have gotten had we not gone there.
One thing about the medications here is that they are more widely available but they are also expensive. I know @jakedduck1 ALWAYS recommends using the brand name instead of the generics. He can definitely provide further information. @santosha can also add to this conversation, as she does not live in the US and deals with different manufacturers as well. They are both very knowledgeable and very dedicated to helping whenever they can. They were my LIFELINE when Keegan was first diagnosed.
As far as the cost of a Mayo clinic Neurology consult, I can't say. When Keegan was first diagnosed, we had primary and secondary insurance that covered the cost of the visit. We were lucky enough to have no out of pocket cost.
Looking forward to talking soon.
Kerry
Kerry
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@keeg1010
Hi Kerry,
I did secretly wish my life ended there and then. I’m an atheist. Perhaps there’s a reason why I didn’t leave this world? I don’t know.
There are so many kind people here in this forum. All willing to share experiences and I hope I had done so in some way. I did a read up on CBDs only to realise they are illegal here, unfortunately.
Generic drugs are cheaper because they have a a little more “fillers” and less active ingredients. I understand why many stick to brand name ones. Public clinics/hospitals use generics because they are cheaper.
I live in Singapore; Taipei is a mere 4.5 hrs flight time away with no time difference. I might have considered Mayo if not for the flight time (≈15hrs direct to SFO).
My insurance coverage for this condition is gonna end soon and I gotta plan how should I navigate this. I don’t mind paying more if it works. I can enter US easily, visa free, seek treatment at Mayo if need be. For how long should I take this still more convenient route of staying in Asia before going elsewhere? I don’t know.
I’ll share here when I decide to go NTUH and finally end my local treatment. And yes, there are quite a number of popular acupuncture clinics in Singapore. TCM had a long history, and since it’a natural thus unlikely to clash with western medicine, I am considering giving it a try.
From the other thread regarding Briviact, many had shared their experiences and frankly some sounded scary. I’m to start on it tonight, 25mg first. My seizures are daily when it was once every 3-4 days, but intensity of each episode had decreased. But according to those around me, I looked noticeably more tired these past couple of weeks. I don’t know why.
I wish Keegan the best and the condition continuing to improve.
Cheers,
Louis