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Old 02-02-2005, 09:35 AM   #1
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Posts: 139
buliem HB User
Angry Back on the Med Roller Coaster/Keppra?

Where do I begin. Last Thursday Patrick and I spent 7 hours in the ER. He had been lethargic and sleepy for days. He'd get up, eat a little bit and go back to sleep. He was even napping at school and nodding out. He was also sick with a cold and cough so I wasn't that concerned. After going to the GP and being placed on an antibiotic I just wasn't seeing any improvement. He was on 1500 mg of depakote and his last blood level (morning before meds and very late due to the wait) was 118. According to the maker of depakote theurapeutic levels are 50-100. Pat's neuro said he could go to 150. I read over 135 for males is dangerous. Again this is straight from the maker of depakote. Anyway I contacted the neuro and he told me to take him to the ER for a blood level, liver function and CBC. I had given him his morning dose and they weren't able to draw blood until approx. 3:40 pm. A good 5-6 hours after his last dose. Well his level was 127. The ER doc ordered a chest Xray to rule out pneumonia. It was clear so he came to the conclusion that Patrick is over medicated since the levels were well above therapeutic. Besides the fact that he watched the child sleep the day away. He didn't perk up until 5pm. I've been complaining about the cognitive effects for months! Aargh!!!!!!

There were also some blood and liver changes. Very scary. We saw the neuro on Monday and he finally agreed that depakote probably isn't the drug for Patrick. Seems I had to have another physician witness my child's behavior before he would believe me and his liver needed to be affected too! I'm really peeved. Now we are reducing the depakote and adding Keppra. We may use Keppra as a monotherapy. That drug also scares me as we have major depressive disorders in my family along with three suicides. What can I do except watch him I guess? I'd switch docs but don't want to do so in the middle of a med change. Guess I need to be patient but that darn doctor better listen to me next time. Things should not have to reach critical mass. I know my child. Sorry for the long post. Just venting.

BTW I never got to ask about the EEG, I was so concerned with the bloodwork. I take it from some comments the neuro made that it wasn't good. We go back to him next week.

 
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Old 02-03-2005, 04:14 AM   #2
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Travis from MN HB UserTravis from MN HB UserTravis from MN HB User
Re: Back on the Med Roller Coaster/Keppra?

Oh boy :/

Watch Kepp when starting. Those symptoms tend to go away. Some will have what a lot of us have called "Kepp-RAGE". Anger ourbursts. Also (trying to think back when I started on it) I want to say sleep may be effected; but these symptoms tend to go away.

HOWEVER, watch it if they want to put him over 3000mg/day. That is the max recomended dose.

They tried that with me when I was on 1200/day of Teg and 300/day of Dilantin, and raised my Kepp to 4000 (not fun sideFX from Keppra).

Overall, Keppra is pretty neutral compared to a lot of the drugs I have been on for the FX.

If the person is kept under 3000/day they SHOULD be ok.

--Travis

 
Old 02-03-2005, 07:08 AM   #3
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KaitiePrincess HB User
Re: Back on the Med Roller Coaster/Keppra?

It totally SUX when you have to start the trial and error process - I'm there now. I feel for you. I just started Keppra. It REALLY sucks - but it's working. At least it WAS working - side for some weirdness last week - who even knows anymore.

I have to warn you. I've slept through EVERY SINGLE ONE OF MY CLASSES in the past week (college level). And then I come home and sleep, and I sleep in, and I practically sleep standing up at work. Grrrrr.....

I had a previous post (on the second page now - called "Keppra induced Something or other") 'cause for a while there I was really feeling funky - like not myself. A few days ago I got really really angry / upset / frustrated and tried to kill my phone (after a phone conversation I didn't like). It didn't break but I smashed it pretty hard...then I burst into sobbing tears and then I wrapped the phone in my blanket and felt sorry for it. Now tell me that isn't weird.

Hmmmm....tread carefully with this stuff.
I'm taking 1500mg / day Keppra.
600mg / day Tegretol.
400mg / day Topomax.

Things got weird after Keppra. I'm working up to 2000mg...slowly very slowly - 250 mg increments every 4 - 5 days.

Take care.
Kaitie

 
Old 02-03-2005, 07:41 AM   #4
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Travis from MN HB UserTravis from MN HB UserTravis from MN HB User
Re: Back on the Med Roller Coaster/Keppra?

Kaitie, you sound very similar to my regiment.

I know ONE friend that had to change Dr's at the clinic and ended up splitting her 250's of Kepp for a slow increase. The 500 increases were way too much for her. She could go with 250 incriments, but no way could they bring her up to 3000 as the first Dr wanted to. She ended up at (what the heck was it) 1325 (or 1375?) something like that for the destination dose. She's one of the few I know that couldn't take it very well... but she's still on it... just can't take it in the typical mass dosses they like to put us on.

(Hence the name Kepp-RAGE; anger (or other emotions) outbursts from no where)

FYI, I'm on 1200/day of TegXR; 3000/day of Kepp; and 500/day of Topa. (BID regiment) Thats why I made my first comment. (don't ask about Teg! they had me on as much at 2200 of TegXR before!!!! no fun at all)

--Travis

Last edited by Travis from MN; 02-03-2005 at 07:42 AM.

 
Old 02-03-2005, 08:42 AM   #5
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Join Date: Aug 2004
Posts: 139
buliem HB User
Re: Back on the Med Roller Coaster/Keppra?

Quote:
Originally Posted by Travis from MN
Oh boy :/

Watch Kepp when starting. Those symptoms tend to go away. Some will have what a lot of us have called "Kepp-RAGE". Anger ourbursts. Also (trying to think back when I started on it) I want to say sleep may be effected; but these symptoms tend to go away.

HOWEVER, watch it if they want to put him over 3000mg/day. That is the max recomended dose.

They tried that with me when I was on 1200/day of Teg and 300/day of Dilantin, and raised my Kepp to 4000 (not fun sideFX from Keppra).

Overall, Keppra is pretty neutral compared to a lot of the drugs I have been on for the FX.

If the person is kept under 3000/day they SHOULD be ok.

--Travis
Thanks Travis. I would certainly hope we won't have to go as high as 3000mg. Patrick is only 10. Of course this neuro seems willing to push the envelope when it comes to meds.

I was reading some things about Keppra and it said that it has "some" effectiveness with tonic clonic seizures. It's effectiveness in myoclonic and absence is unstudied. My son has generalized seizures. AKA Tonic Clonic (grand mal) and absence. I asked the doctor about this and he said the reason it is only really indictated for partial complex is because those are the people they do the studies on. Maybe because they are harder to control or there is a verifiable cause? He said they may never change the indications. I sort of feel my child is a guinea pig. BTW Patrick never had a grand mal until he was placed on depakote. Only absence (petit mal)

 
Old 02-03-2005, 08:52 AM   #6
Senior Member
 
Join Date: Aug 2004
Posts: 139
buliem HB User
Re: Back on the Med Roller Coaster/Keppra?

Quote:
Originally Posted by KaitiePrincess
It totally SUX when you have to start the trial and error process - I'm there now. I feel for you. I just started Keppra. It REALLY sucks - but it's working. At least it WAS working - side for some weirdness last week - who even knows anymore.

I have to warn you. I've slept through EVERY SINGLE ONE OF MY CLASSES in the past week (college level). And then I come home and sleep, and I sleep in, and I practically sleep standing up at work. Grrrrr.....

I had a previous post (on the second page now - called "Keppra induced Something or other") 'cause for a while there I was really feeling funky - like not myself. A few days ago I got really really angry / upset / frustrated and tried to kill my phone (after a phone conversation I didn't like). It didn't break but I smashed it pretty hard...then I burst into sobbing tears and then I wrapped the phone in my blanket and felt sorry for it. Now tell me that isn't weird.

Hmmmm....tread carefully with this stuff.
I'm taking 1500mg / day Keppra.
600mg / day Tegretol.
400mg / day Topomax.

Things got weird after Keppra. I'm working up to 2000mg...slowly very slowly - 250 mg increments every 4 - 5 days.

Take care.
Kaitie
Thanks Katie. I did see your other post and I had responded that it sounded like you where suffering from depression. I'm glad you are feeling better.
Well except for the sleepy part. Patrick gets sleepy at first. The last couple of days (since starting the Keppra) he has been getting super hyper at school in the afternoon. This is about 5-6 hours after his last dose of both dep and kepp. Maybe a rebound thing? He gets his second dose of depakote after school and then more depakote at night along with another Keppra. He's taking 1250 mg of depakote and 500 mg of Keppra. The neuro started him off on 250 mg of Keppra. We'll see how it goes. I'm more concerned with his bloodwork/liver function at this point. We go for a morning draw tomorrow.

 
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