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@keeg1010
Hi Kerry,
Thanks for the kind words! I know there are many kind souls here ever so ready to share their experiences which can be of help to someone living thousands of miles away. This is indeed a great group.
It’s s likely Mayo does telehealth, but I believe I still need to be physically present at the pharmacy to collect medication. I also prefer to meet my neurologist face to face. One frustrating thing about epilepsy is the effects of medication need time to show its level of effectiveness. It’s not paracetamol. Appointments are once 2-3 months. How many months do I have left in life to continue dealing with it? I may not even find a combi of medication which works till my death bed. Not to sound depressing here, it’s a fact I just gotta face. I keep myself upbeat by telling myself I’m already the lucky one; being able to continue eating KFC whenever I want and still walk upright. Just that a Filipino caregiver now needs to be at my side and I treat her as a friend.
MTS is challenging, to put it mildly. I couldn’t imagine what it’s like when your family first heard Keegan would have to deal with it. I wish your family the best and have more positive experiences to come.
Cheers,
Louis
P/S I realized I must have visited Arizona when I was a kid since I had been to Grand Canyon. It’s magnificent. Really.
Replies to "@keeg1010 Hi Kerry, Thanks for the kind words! I know there are many kind souls here..."
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@louissc
Hi Louis,
I completely agree with you about the medications. They take time to show whether they are beneficial or not and if you are going to have major side effects. It's definitely difficult to find the right combination of meds, that you can tolerate, that are semi-effective, and don't cause severe side effects. It sometimes feels like a never ending battle. I can SO relate.
I am glad to hear you are still able to walk and eat KFC whenever you want. It's the small things, and I love KFC!
That's amazing that you got to visit the Grand Canyon. I'm so glad you did. There are so many beautiful places in Arizona, if you can tolerate the heat. I'm personally not a fan of the summers but do love the winters!
I am glad to hear you found a Filipino caregiver, who you can rely on. Sometimes, it's just knowing that you're not alone and have a friend that makes life a little easier.
MTS is definitely challenging. Keegan has been through so much, in his short 28 years. He was born premature and has a diagnosis of cerebral palsy. He was also diagnosed with autism when he was 3 and is non-verbal. He wasn't diagnosed with MTS until September of 2020, when he had his first seizure. We face some challenges when adjusting meds because he can't verbally tell me how he feels but we know him so well that we can figure out what's going on but tracking any changes. Keegan moved to a group home 4 years ago and has a one-to-one provider with him at all times, since we never have a warning when a seizure will happen. HIs providers are wonderful and so is the group home. I see him several times a month and we go out to eat whenever we can. I will tell you though that for all his struggles, he is the happiest, most loving, kind kiddo. He is very loved and very spoiled and deserves every minute of it...LOL.
Keep me posted on how you are responding to Briviact. I really hope that it makes a difference for you.
Take care,
Kerry