Day 5 and Grant is home :) Oooh Keppra!

[Paul from Australia]

Monday 2nd February 8.21 p.m.

Hello.

I am conked out so this will be another small post.

Grant came home today and is in pretty good form :)

The Key Keeper arrived and we looked at two possible keys. Not telling you yet though what I am talking about.

Grant has now had his Dialantin increased to 360 mg daily. Blood test in a week.

OOH KEPPRA!

Yes, you read right we will try Keppra again. The first time was about 6 years ago and was terrible. Grant's child neuro got carried away and put Grant on a mega dose to start with and didn't tell us about Keppra Rage :( Fortunately we saw the VNS prof one week later. She took one look at Grant and immediately recognised the rage and instructed us to wean him off immediately. She did however say that we should not give up on Keppra. So we will give it another chance to prove its worthiness. We will also give Vitamin B6. Grant will start on a very small dose.

Interestingly enough an elderly gentlemen who has his wife in hospital in the bed next door told me that he suffers from epilepsy (had 2 seizures) and is on Keppra 500 mg a day. He said that the Keppra seems to make him more alert and quicker in his responses = very interesting.

I will post a query seperately about Keppra but will also ask here.

QUESTION

What are your experiences, good and bad regarding Keppra?

GRANT'S FANTASTIC HOSPITAL VIDEO

While at hospital I videoed Grant in hospital while we did the rounds :) I know you would love to see the video so I will put it together and upload probably tomorrow some time.

Thank you for your support and prayers.

Have to go now as Grant needs to have a proper meal of home made grub instead of the Jevity muck in hospital :)

God bless and seeya later.

Paul and Alison and Grant working in championship mode

[andromeda31]

Hi!

Glad to hear he is at home again! Caitlin is on keppra currently (also depakote). She started out at a very low dose, but I noticed anger/aggressiveness right away. It got worse as we titrated up to the full dose of 200mg am/300mg pm. She was really bad, even the neuro noticed it (she was poking at the baby in a mean way) when we had our regular appt in december. She asked how she was at a lower dose and said well if she is good at 1mL that would be fine but also gave a Rx for topamax and a schedule of weaning. Well I hate having her on all these meds and didn't just want to throw a 3rd in the mix so we (Brian & I) made the decision to first get her off the keppra and see what happens (she still is on depakote). She was fine seizure-wise until we got under 1mL...the drops came back and hand tremors. Well turns out that she had a sinus infection too though...but we did go back up to 1ml (100mg) 2x/day and that is where we remain. The behaviour is so much better now! That improved right away when we started weaning. I am pleased with it now. I also read somewhere about it being a cognitive enhancer, haven't had time to investigate that further. But that was another reason I didn't want to switch to the topamax (dr said that that is a mentally 'dulling' drug). She has been good on the 100mg and I have noticed a few hand tremors here and there but she has been sick recently (still sinus junk), but this weekend seemed really improved finally...she has about another week of antibiotics to take for the sinus yet. I do like that it is a liquid and I can just 'shoot' it into her mouth...she can't prevent me from doing that as she is still missing her 2 front teeth!! :D Good luck!

Lisa O.

[Bahamaroot]

Hi Paul and Alison,

I'm glad you have your child back home where he belongs. :)

I started Keppra on September 2, '08 with my Dilantin. The first two or three months was not real good. Mood swings, bouts of depression, BAD FATIGUE. But with support, I stuck with it and it is working out well now. I had my doubts at first but with time my body did adjust and the strong side affects did fade. I do take B6 also and I think it helps, it certainly doesn't hurt. The Keppra has done a very good job controling my SP seizures to this point. I am MUCH more alert on Keppra than Topamax.

I started the Keppra to replace Topamax. I had taken Topamax for several years and it just became too much for me to handle. Topamax was added to my Dilantin to control break through SP seizures. They only worsened over time. The cognitive dulling was horrible. It just kept getting worse over time. I lost weight immediately, and over time that got worse also until I had lost over 35lbs. I got to the point where I was a skinny zombie with no appitite or energy. Something had to change.

I take Dilantin to control Tonic clonic seizures and it has worked well. My neuro has considered stopping it though if I do well on the Keppra for a period of time. Hopefully the Keppra will control all my seizures without the need for a second med.

Of course this is just me, and I am an adult not a child. There are good and bad stories for all meds. They work different for all of us. I can only suggest not to give up on the Keppra to quickly and to also be cautious of Topamax. Keep journals and stay in good contact with the doctors. God bless you and best wishes!

[Ladybug]

Oh...those keppra days. They gave ds the first dose (1 ml or less) at the hospital and within 15 minutes, he got dizzy, disoriented, and fell over. They thought he must be having a new type of seizure. The symptoms just kept adding with every dose. As soon as they dose, he would drop whatever was in his hands (food) and pass out asleep. He would sleep from 8 am to 3 pm. We left the hospital at the end of the week with him still sleeping and they said it would wear off as he adjusted. It never did. Then the twitches started, but only when he would fall asleep at night. He has facial dyskinesia now that we have been unable to stop years after the med. His swallowing was affected, but came back after stopping the med. His mental processing slowed to responding 2 minutes after asking him something or never at all. He would vomit all night when the neuro's had us try single loading doses at bedtime. His IQ plummetted over 50 points. He got ataxia and just drooled. He had emotional lability while he would be stomping mindlessly on someone. All in all, obviously not a good one for us. They finally gave up on the med 1 1/2 years later when ds had so many ER Chief of Staff calls directly to them at 3 am to demand his dose be lowered or him taken off the med. It did seem like a very powerful AED for someone who had tonic clonics and the neuro's favored the drug due to the least side effects, greatest number of seizure types coverage, and kindling effect on brain neuronal development (supposed to preserve brain function and help stimulate new pathways).

[grace]

Glad he is home and enjoying a home prepared meal.

hope your day is lovely and not so HOT.

all the best

[khfernandez]

Betsy is on 2500mg keppra and 10mg frisium. She never had any noticeable side effects. We're coming up on 1 year without a seizure.
Kim

[lacyndarella]

Jimmie is far more alert on keppra than off. Not surprised by that at all.

[swift]

I am so glad that Grant is back home!

[wheeliebird]

Yay, Grant's home, that's AWESOME news!! :)