Weaning off keppra protocol?

@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.

@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

@keeg1010
Hi Kerry,

I really need to exercise some restraint when it comes to KFC lol. But life is short, right? I really hope to be able to take a 15 hour plane ride 1 day. If you think Arizona summer is hot, you should come experience our daily over 90 degree temperature and almost 90% humidity.

My mum was the first to be constantly by my side before any caregiver. Initially I was a little embarrassed being fully naked when showering in front of her. Then I told myself she saw me naked for much of my life and I came out of her body. So, yeah. In the end, all parties can only keep a look out for that 99%. In the event that 1% happens and takes my life, I tell them that’s just life so don’t feel guilty. Just curious, what does a group 4 home do? Keegan is lucky to have loving parents!

It’s 2 nights now with Briviact. Besides a little daytime fatigue and balance issue, it seems ok. Keeping my fingers crossed.

Cheers,
Louis

@louissc
No restraint needed for KFC. In Arizona, they have a special on Tuesdays for 8 pieces of chicken for $10. We take advantage of that often!
Well, it definitely sounds like it's just as hot, if not hotter. I used to live on the east coast where the temperature was similar to yours. I DEFINITELY do not miss the humidity but I do miss the ocean.
I'm glad to hear that your mom was constantly by your side. Believe me, as a mom, all we want is to be there and do everything we can. We don't care if what your age is-just that you are well cared for. I really hope the Briviact works well for you. I know it'll take time before you'll know so I'm keeping my fingers crossed as well.
As far as a group home, in Arizona, it is a house that provides twenty-four-hour care. There are providers in the home day and night and Keegan is assigned to certain providers, all of who he loves. Keegan lived at home and I was his primary caregiver for 24 years. My husband and I decided at age 24, we should find a good placement for Keegan because we will not live forever. So, Keegan is in a 3 bedroom house, on a golf course, with 2 roommates he loves. The group home works on daily living skills and having Keegan be as independent as possible. They constantly do activities, like movies, bowling, dining out, parks, etc. He LOVES it! I see him several times a month and I am close with all of his providers. It was the best decision we ever made for his independence.
I hope you enjoy some KFC! 🙂
Talk soon,
Kerry

@keeg1010
Hi Kerry,

A bucket of 8 for $10? After factoring in the exchange rate, the same here will cost $23. You made me wanna fly over already.

Planning for our afterlife shouldn’t be a taboo. and I am glad both of you had made the necessary plannings for Keegan. That’s really important.

A group home here is mostly for old folks although I believe they do also house people of younger age who had lost their independence. Many families need them due to the old parents’ needs and also a 3 bed room apartment here is < 1000sqft. That is barely enough for a couple with a kid or 2.

Currently, both you and your husband and Keegan remain a close family, and for Keegan that emotional connection I’m sure means a lot to him. It is difficult to express oneself for most with epilepsy, but no doubt I’m sure he appreciates it all.

Well, I couldn’t remember the last time I visited a bowling alley. Those drugs do affect my memory ALOT. Many know I love the KFC for the chicken, McDonald’s for the fries (no offence but please don’t associate me with Trump but we know him here via CNN) and Carl’s Jr for their burgers. Unfortunately, the Carl’s Jr outlet in the nearest mall just closed and now Grab no longer delivered their burgers to my apartment. 😔

See what I mean by appreciating what we can still do? Besides drinks (I don’t mean water) and seizure, all’s good.

Cheers,
Louis

@louissc Thanks for your comment. I wish you the best on your new med. But I need your help in explaining what kepprav2.0 means.

@royanthony

Hi, that’s what my neurologist told me when I first mentioned Briviact to him during my consultation in April.. And I went “huh what do you mean?”. I was put on Keppra for I think a year in 2024, which we both agreed didn’t work thus decided to stop it. Briviact is not commonly consumed in Singapore thus had to be indented if requested. I guess that’s the problem here - drugs variety just ain’t wide enough.

Cheers,
Louis

@royanthony
I believe keppra & Briviact are basically equal as far as seizure effectiveness.
Briviact is more user friendly, so to speak. Fewer side effects especially Keppra rage.
But it sounds as though your physician believes Briviact may be more effective.
Take care,
Jake

@louissc
I know...a bucket of KFC for $10 every Tuesday? We can't help ourselves but I will tell you it's doing nothing good for my figure...LOL 🙂 I am COMPLETELY with you on McDonalds' fries. There are no better fries anywhere. Carl's Jr. has some good burgers but we have a burger place called In and Out burger and it's FANTASTIC!!! Again, doing nothing for my figure but you have to enjoy some of life's little pleasures, am I right?
I agree with you. Planning and making sure Keegan was settled and providers were in place was and is extremely important. We need to know that he will be cared for when the time comes. He is a very happy guys and gives us his forehead for kissed every time we come over. We will be going over tomorrow to see him. I can't believe how small the houses are there. The group home for Keegan is a 3 bedroom, 2 bathroom and is probably about 1450 sq. ft. It's a nice house and is plenty of room for the 3 boys there.
You definitely have to appreciate all the small things in life. It's the little things in life that are so satisfying. For me, a good meal and glass of wine is wonderful!
I totally understand about the memory issue. Most AED's affect your memory, at least in my opinion. How are you doing on the Briviact? Tired during the day? Any other side effects so far? I am keeping my fingers crossed!
Keep me posted. I look forward to talking with you soon.
Kerry

@louissc
Hi Louis!
Please forgive my absence these past days — I had a minor surgery last week and have only just been able to catch up on Connect today. All is well and I'm recovering nicely.
I want to say how much I appreciate your openness and honesty in sharing what you've been going through and how you've been feeling. As I may have mentioned before, my first two years of epilepsy treatment — from 2019 to 2021 — were very difficult, and I too had some dark thoughts during that time. I believe this is an experience many of us in this group have been through, though we don't often speak openly about it. It takes real courage to speak so openly, and I admire your attitude very much.
I'm truly glad you're still here, and I mean that sincerely. I admire your remarkable resilience and sense of humor. Finding joy in KFC, appreciating what you can still do, treating your caregiver as a friend — these remind me of an exercise my yoga teacher recommended during my own dark times, when my plate felt so full and I was dealing with so much daily that there seemed to be very little to celebrate. She encouraged me to acknowledge every positive aspect of my day — the small, basic things I'd once taken for granted and was now struggling with. I called it my Santosha exercise — santosha meaning contentment in Sanskrit. Through it, I realized that even while struggling, I still had much to be grateful for, and it helped me recognize the progress I was making with my new treatment, which I was starting at that time. My glass felt a little fuller every day.
I hope Briviact works well for you, and please do keep us posted on your decision about NTUH. I believe there's great wisdom in ancient healing traditions such as TCM and Ayurveda. Years ago, I met an Indian woman living in the US who, through a combined treatment of Western medicine, Ayurveda, and a specific yoga practice carried out by a hospital in India, became seizure-free for several months and greatly improved her quality of life. This stayed with me.
Keeping my fingers crossed for you and wishing you brighter days ahead. And one last thought — have you perhaps considered the support of a neuropsychologist during these challenging times? It made a real difference for me.
Chris