Not a problem - better late than never <g>. Lars seems to be doing pretty well. He's up to 2400 mg a day now, labs are fine and his seizures are definitely changing in the right direction! He's having longer spells without them and they're not as strong as they were. Poor guy just had a rash of falls yesterday. Seems that his seizures come in clusters - he goes for a few days without any or may have just a really mild one or two then has a couple of really rough days.
Lars doesn't have any other health problems fortunately. He'll be getting monthly blood work for several months. The neuro has him off the Zonegran and will start tapering the Keppra down to a more reasonable dose (he was on 4500 mg of that!) His current meds are 3750 mg Keppra, 600 mg Lyrica and 2400 mg Felbamate. Phew! Amazing that he's not totally groggy all the time!
My son was on felbatol and it helped greatly with his TC's. You do have to weigh the pro's and con's..
Con: side effects.... aplastic anemia (bone marrow suppresion)
with my son it was lack of appetite, sleepLESSness, irritable tummy
Neuro told us that if Kevin's only health problem is just seizures then this med will work well, if there are other health problems look into it closely and debate on it.
How is it going now that it is almost 3 months later?
Howdy y'all. Hope your summer was good! Have any of you had any experience with Felbatol (felbamate)? Lars seizures have gotten really bad - very frequent...
I don't know anything about the drug. I also don't know anything about his neuro, but I've started seeing David Vossler, he's at Valley in Renton now, was...
Lynn, Dr. Holmes is with the Regional Epilepsy Center at Harborview/UW and is a researcher and associate professor as well as an excellent, personable ...
Sherry, I'm glad you have such wonderful doctors. I'm fairly new to Epilepsy, so I probably should have kept my big mouth shut. I've only been diagnosed...
Lynn, Oh, I fully understand the fear! He can be talking with you and down he goes right in the middle of a sentence! There have been more times that we've...
Hi Sue, I do not know if you were sending it to all of us in the support group or just Sherry, but this is Eric. Thanks any way Eric eda4665@... ... ...
I am so sorry I just saw this... My son was on felbatol and it helped greatly with his TC's. You do have to weigh the pro's and con's.. Con: side effects.......
Missy, Not a problem - better late than never <g>. Lars seems to be doing pretty well. He's up to 2400 mg a day now, labs are fine and his seizures are ...
Dear Parents: We are starting a new support group for parents and caregivers. The group will meet every other month on Saturdays from 10am till noon. Our...
Mineko, I would love to come but it is a 5 hour drive heh heh. We just found out today THE day 7 years ago that Kevin had his first seizure... That Kevin is...
Missy, It's great news that Kevin is going to DC to attend Kids Speak Up!! I am sure he will be a perfect advocate! I won't be joining you, but Alta from...
Mineko, Oh my gosh, thank you for posting this link. I am new to this group and have never heard of the Epilepsy Foundation Northwest before. My 12 year old...
Thank you so much for these links. They are wonderful! I mentioned the camp to my son ... he's 12 ... and he wants to go. No hesitation at all on his part....
Felbamate. Sherry ... From: Cent_Wa_Epilepsy_Support@yahoogroups.com [mailto:Cent_Wa_Epilepsy_Support@yahoogroups.com] On Behalf Of SUE OWNBY Sent: Wednesday,...
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