Weaning off keppra protocol?

@keeg1010
Hi Kerry!
A heartfelt thank you for being such a warm and steady presence. Your support for Louis — and this community as a whole — is truly appreciated. 💜😊
Chris

@santosha
No thanks are necessary Chris. I'm so glad to be a part of this community. We all rely on each other and everyone is always willing to help. Like I told Louis, you and @jakedduck1 were my lifeline when Keegan was first diagnosed. I'm blessed to call you friend 🙂
Kerry

@keeg1010

Hi Kerry,

Yes! A bucket of 8 pieces for $10. OMG! I can only smile and dream, with mouth drooling. If that's to be a single day promotion over here, I can assure you queue will form outside every KFC outlet in the country. I had heard of In & Out, it just hasn't landed on our shores yet. The day it does? Trust me. There's going to be a queue. One weird manner Singaporean is we love to queue. The new iPhone? Yeah we queue. We are nuts, I know. Even without epilepsy. If you have the chance, come visit south east Asia. Every country has respective amazing own cuisine (I doubt you will fly 10k miles to eat KFC) and there's just so much to see/do at a decent price.

Yes, apartments are small here, and it's 99 years leasehold. A house at 1450sqft sounds pretty decent, since it's a chore to clean up a big place. Yup, unfortunately spaces for living here ain't big and that's why some of my friends went to Australia and are so happy there.

Something bigger may be meant for Keegan, just that he hasn't encountered it yet. Can you imagine both Elton John and Agatha Christie battle epilepsy? The home he's at home is a good idea. He can interact with others in a safe environment, and he genuinely loves his parents' company. You and your husband's!

All of us have to appreciate the little things in life (just act innocent when you can with your doctor if you have to about those KFCs). I hadn't touched single drop of alcohol for almost 10 years now due to possible clash with medication, unfortunately.

@santosh099 This is to Chris as well. It's been 3 night of consuming 50mg of Briviact per night. I am glad to say there's no major side effect like suicidal thought or binging on KFC. The side effects I felt for the past few days are the normal ones I would feel when consuming any AEM, so nothing to worry there. We are 12 hours ahead of the East Coast, so it's Tuesday afternoon here and I started consuming it ~8pm local time Saturday.

Most important - no seizure. I used to have one daily and I actually had caffeinated tea outdoors this morning. I avoid all drinks with caffeine (including Coca Cola) unless in a safe environment as I am not sure if that's a trigger. After 3 hours, nothing except for a slight headache now which I am not sure whether I can attribute to either tea or the drug. I will update again on Saturday evening local time unless there's anything major.

Cheers,
Louis

@louissc
A queue? Needs a little explanation. Like, a massive line waiting to get food? I don't blame you. Some things are so worth waiting in line for. Just wait until In and Out burger is there....WOW! Their burgers are fantastic and their fries (although not McDonalds) are seasoned fries and you get a ton. They are pretty good!
I agree...I cannot imagine Elton or Agatha dealing with the difficulties of epilepsy. I think it takes an extreme amount of courage and fight. Never give up. No matter how bad things get...they can always get better. At least, Keegan has taught me that. He definitely changed my life and career. I changed careers and having been working with the special needs community for 24 years. He definitely touches everyone who meets him. He just has that smile and that innocence and is so open to everyone.
On another note, what is a 99 year leasehold? I've not heard of that before. You have a lot of friends in Australia? Have you ever visited?
I know there are so many triggers for seizures and some are so hard to figure out. I'm glad you are doing well with Briviact, so far. Did you increase your dose? I thought you started at 25mg? I could be mistaken. One thing you mentioned was caffeine. I have heard that could be a trigger. I'm glad there was nothing major with your caffeinated tea.
Please keep me posted. I enjoy our conversations and learning form you 🙂
Kerry

@santosha

Hi Chris,

No need to apologize and I am glad all went well for you! Thank you for appreciating my humor. It's great to know my words will make others smile and maybe even laugh. That's one contributor to that "glass fuller" feeling.

I did consider yoga, which I can do alone just by following Youtube. I need to have my very own Santosha exercise. There are many treatments options which are non western ones out there I don't know where to start!

I had been through pretty dark days, and so had my wife I am sure. I feel coming to a forum is to share and not hide. Us with the condition understand what our loved ones go through too having to deal with it in a different manner. Everyone sees both sides of the pond.

As for Briviact, so far so good! It's been 3 nights since I started my nightly dose and nothing to share except one - no seizure since I'm on it! So, yay? I will be a bit slow to respond due to the time difference. Unless you see nothing from me on Saturday night or perhaps Sunday morning local time (still Saturday over at east coast), I am all good. Thank you for crossing your figures for me.

I don't know anyone who is a neuropsychologist. What role does he/she play?

Do continue to have a great week.

Cheers,
Louis

@keeg1010

Hi Kerry,

I just realized from my carecagiver my nightly Briviact dossage is 50mg, not 25mg. Sorry for the error. After 7 nights, if there's no worry, I can include another 50mg in the morning. That will make it 100mg daily.

As for the queue, I mean we queue when there's a hype for anything. For e.g., if In & Out decides to set its first overseas outlet here and there are many super eager to try, long queue will surely form outlet that outlet for that piece of fried chicken. Singaporeans are crazy, I know. Seasoned fries are everywhere here, but I just want mine crispy and with salt.

Your current job is a really meaningful one. I have a friend working in social service. Admittedly, if one wants to be crazily rich, that's not the place to go. However, that's a job you can bring smiles to faces of so many people. Keegan is already living a life with purpose. When our time in this world is up, all of us will leave this world equal. It's so important for you to find joy and purpose in things you do, and I believe your job is giving you those and more.

Singapore's residential properties have 2 categories - leasehold and freehold. A freehold one sits on a plot of land which belongs to the purchaser forever, thus it can be an asset which can be passed from generation to generation. As for leasehold, the property sits on a plot which belongs to the purchaser for the stated period (normally 99 years) upon purchasing, often by a property developer. After the period is up, it goes back to the state. The plot of land is surely huge enough for apartment blocks with units of different sizes to be sold. The state also operates a public property developer arm, building public housing without all those frills thus can be bought with lower pricing. I hope my explanation makes sense?

And yes, I had been to Australia multiple times. Singaporeans just love traveling to Australia for holiday. Since our law doesn't allow for dual citizenship, my friends there can at most have permanet residency status unless they choose to give up being a Singaporean and apply to become an Australian. However a Singapore passport is too precious to give up. They love the life there. Living in a house with a garden which is often cheaper than a local shoebox apartment, A car here costs at least $130,000 and it only belongs to the owner for 10 years. I think over here a car can be had for less 0s with no limit to ownership period. Of course, no place is an utopia and all of us recognise that.

You need to come to this part of Asia to experience for yourself the own unique wonders each country has to offer (I doubt you will fly 10,000 miles to eat KFC). I enjoy our conversation too. Learning, and be inspired by your stories. Have a good morning, and a good day ahead.

Cheers,
Louis

@jakedduck1

Hi Jake,

Yup. My neurologist named it Keppra 2.0. It's one with less side effect, I am currently into my 4th night on it (50mg every night) and it seems pretty decent with no more daily seizure! The side effects I felt in the day may be due to the other AEMs I am also currently on. Keeping my fingers crossed for the time being. I will update after 1 week on it, before my dose is to increase to 50mg both day and night (100mg daily).

Cheers,
Louis

@louissc
Hi Louis,
Thanks for the clarification on the dose of Briviact. I just saw that you have been seizure free for a few days now. That's so exciting! I couldn't be happier for you! I will keep my fingers crossed for you that you continue to be seizure free without side effects.
I now understand the queue and the land leasehold and freehold. I would guess that the prices vary depending on whether you purchase a leasehold or freehold plot. I can't believe a car there costs $130.00 thousand and it only belongs to the owner for 10 years! That just seems crazy expensive to me. And I thought the vehicles in the US were expensive!
I would love to visit Singapore and Australia. Maybe one day! I would love to try the foods there. Besides KFC, what are your main food dishes that everyone loves? Do you have a lot of street vendors in Singapore? Just curious. Those are usually the best places-the little mom and pop shops. I'm not familiar with Singapore's culture but I am learning a lot from you!
Yes, you are correct. Working in the position I'm in DEFINITELY won't make me rich but I have rewards far beyond. Helping people get services from the state, to the first smile I get from a kiddo, to the first time they speak or walk is worth it's weight in gold. I've worked in pretty much every aspect, from home care/therapy to office administration. Every position has it's own rewards!
Keegan is definitely living a life with purpose. We went to visit with him today. As usual, he was all smiles and got tons of kisses. I'm always in awe of his positivity.
Keeping my fingers crossed that all goes well over the next few days and you remain seizure free! I can't tell you how excited I am to hear that. Every day matters 🙂
Talk soon,
Kerry

@louissc
I didn't realize the licensing to drive was so strict in Singapore.
I heard that India was one of the strictest places for driving with epilepsy. Usually a lifetime ban but I heard that is easing up a little. I heard the same is true in Singapore. Not easy to get a license but not not always impossible either. Any truth to that. Do they have attorneys that can help people with epilepsy get their license? I hired a lawyer to get my license back last year.
My friend went there for a year or so and told me the city has very strict cleanliness standards/laws. She said you could be arrested or fined in the thousands of dollars if you spit, litter or throw gum on the street/sidewalk.
Louis, what type/s of seizures do you have? I might have read it but forgot.
$130,000 for a car in insane. What type of car would that be? Is that the cheapest? How much does a Certificate of Entitlement cost if you want to drive a car longer than 10 years?
Take care,
Jake

@jakedduck1

Hi Jake,

My official diagnosis is refractory multifocal epilepsy. At first diagnosed, I would have seizure once every 3-4 days compared to the daily ones I had now (before Briviact). Those daily ones, although daily, were of lower intensity but I felt my quality of life was more affected, The lower intensity of seizures didn't make me upbeat at all. I brought up the possibility of surjery with my neurologist, who said were I to do surgery most of my brain would be in the bin. I was being put on different drugs and combinations to see if I would hit the jackpot. Sadly no, until Briviact. It’s still early days and I am keeping my fingers crossed on this one.

I know in Japan, if one doesn’t experience seizure for 5 years, he/she has the legal right to drive again. In Singapore, we just can’t do that for less legal complication and finger pointing in event of an accident. For anyone with epilepsy, we simply have to rely on public transport and Uber/Grab/cab. If you want to have an idea how much a car cost, you can go to this site http://www.sgcarmart.com . The exchange rate is approx. 1.27. US$130,000 is about enough to get an entry level BYD (I am not sure if you have it in US). The Certificate of Entitlement (COE) works based on a bidding system. The state will release a certain quantity of COEs twice a month, and the car agent or consumer can go bid how much one is willing to pay for that COE. Those highest bids of the quantity available at the time of bidding will “win”. If I want to keep my car after 10 years, I can but I will need to go bid for another COE.

Yup we do have strict cleanliness law. A few thousands will be an exaggeration, I will say a fine of approx. $400. All these rules/regulations were implemented when we gained independence ~60 years ago. Signs of those reminding people of the consequences if rules were broken could be seen everywhere then. That level of strictness was due to one reason – we were a poor country. The state simply couldn’t afford cleaning dirty streets. Money had to be spent on areas like education. Those strict rules still apply today but there are no enforcement officer plying the streets catching people littering or spitting gum. Some people still have their bad habits for sure, but for many we don’t litter. Even if the state fines people $1million for littering, how will it affect me when I don’t do it? We don't care about exisitence of those rules. I won’t say our public cleanliness level has reached that of the Japanese. They are insanely clean everywhere.

I hope my explanation made sense. It’s great to know you are curious about Singapore and besides my experiences with epilepsy, feel free to ask me anything about our little city state.

Cheers,
Louis