felbamate vs. VNS help please!!!!!

[tjsmom]

i need to make a decision on what i want to put my 4yr old son on...... they both have ups and downs to them...... here are the pros and cons for both and then please let me know what you think!!!

felbamate

pro-
1. 50%-50% of being seizure free

con-
2. can develope permanant and fatal side effects including liver failure and aplastic anemia.

VNS

pro-
1. 10-12% chance seizure free but might take the edge off the effects of the seizures.

con-
2. might not see full effects if it works for 10 yrs.



please any advice or opinion would be welcome i have been agonizing over this decision since october!!!!

 

[epileric]

My advice would be try the Felbamate first. It's a lot easier to stop a drug if it doesn't work than remove a VNS.

Even if it doesn't work you can try the VNS afterwards but once you try the VNS it's much more problem to remove it & the actual leads cannot be removed from the nerves.

 

[Cint]

tjsmom,

I've been on both and I definitely say stay away from Felbamate/Felbatol. When I was on it years ago it gave me tremendous migraines. I couldn't get out of bed for days. Plus it didn't do a thing for my seizures. And as you stated, there is the risk if aplastic anemia and liver failure. I thought it was taken off the market, since there is a black box warning for the drug now.

From http://www.epilepsy.com/medications/b_felbatol_children

Felbatol is used to treat children with partial seizures either by itself or in combination with other seizure medicines. It is also used in combination with other seizure medicines for seizures in children with Lennox-Gastaut syndrome.

Doctors figure out how much medicine to give to young children based mostly on their weight. To keep side effects at a minimum, the doctor probably will prescribe a low dose to start with and increase it slowly. For Lennox-Gastaut syndrome, Felbatol should be started at 15 milligrams (mg) per kilogram (kg, about 2.2 pounds) of body weight per day. This amount is divided into three or four doses. The dosage of Felbatol is increased by 15 mg per kg per day at weekly intervals until seizures are brought under control or unacceptable side effects occur. A typical ongoing dose is 45 mg per kg per day.

If the liquid suspension is used, it is very important to thoroughly shake the bottle immediately before measuring. A child who gets a dose from a bottle that has not just been well shaken may get too much or too little medication.

I've had more success with the VNS along with medications, but of course I'm an adult, also.
And from http://us.cyberonics.com/en/vns-the...elcome-to-vns-therapy-for-refractory-epilepsy

VNS Therapy is a non-drug treatment option that could help provide a new sense of control and independence to people living with seizure disorders.

VNS Therapy is indicated for use as an adjunctive therapy in reducing the frequency of seizures in adults and adolescents over 12 years of age with partial onset seizures not controlled by medication or who experience intolerable side effects. More than 60,000 people worldwide have been treated with VNS Therapy for epilepsy.

 

[Paorrin]

We were in the same dilema a year ago. My daughter was offered three diffrent options 1) corpus callosotomy (cutting the brain in half) 2) vns or 3) felbamate. We went with the vns last febuary the surgery went well we knew 40% have some reduction in seizure activity 40% no help and 20% seizure free. As we started to turn the device up in power we saw some results. But that didnt last long. The magnet which gives a dose at the time of the event would help about 30% of the time to stop the seizures and 30% of the time it lessened the seizure we think. But after 8 months it just didnt seem to be doing anything. At that point we were having clusters of 20-30 seizures (drop seizures) an hour 5x per day. Thats when we decided to go with felbamate. We had to sign a consent form that we were informed of the risk of liver failure and aplastic anemia. We felt we had no choise our daughter was seizing constantly even diastat was always helping. Our neurologist gave us a schedual of dose increases to get us to her theraputic drug dose and started to lower the other meds (depakote, zonagan, and topamax) we started to see results within days. As we raised the meds it got better. By two weeks we were at 2cc of the med bid. With almost no seizures our target dose was 6cc. As we went up we started to stop her other meds (all under doctor orders). When we got to 6cc bid she stoped eating for five days almost nothing but sips of water. We told our neuro who brought us into the ER where our daughter was found to have liver problems and platletes were low. We were doing weekly blood work before this but it just jumped up on us. We halfed the depakote dose to stop the low platelets and stoped the felbamate to see if the liver levels would normalize. This worked but we instantly started having seizures again. The doctor put us on a eeg to see where we were at and we had to make a tough decision. We decided to restart the felbamate at a low dose and see what happens. We stopped zonagan and topamax completely. Only 1cc of felbamate and half the dose of depakote. By the next day the blood levels started to normalize, the seizures stopped and her eeg looked and i qoute" she had the best eeg ever" that our doctor has seen on our daughter. We settled on 2cc bid of felbamate and half dose of depakote. The blood levels normalized compleatly in 3 days and we were discharged home.
Trust me we were scared we were going to loss our daughter. But we never regret doing the vns or felbemate. All we do is try and make the most informed choises as they come up. We thought the vns was a miner surgery compaired to a corpus callosotomy and didnt come with black box warnings. Looking back the vns worked alittle but not for long and the felbemate with one bump in the road is working great no more drop seizures or partial seizures only afew absence once or twice a week.
This is my own expereance everyone is different. Me and my wife try never to regret the choices. We also have a great relationship with our neurologist. We have learned to trust her opinion and that is probably the most important thing in this long road is to have a good relationship with your doctor. And the most important thing it to have faith though it may be hard at times and is tested regularly.
I hope this helps you some my only advise is if you go with the felbemate go VERY slow on the increasing of the dose to prevent side affects

Robert father of Abigail 11yo LGS, SBH

 

[tjsmom]

thank you all for sharing your experiences with me. this is a hard decision for anyone to make, and hearing others experiences after making the decision is truly helpful. i will keep you all posted as to my decision and the outcome please keep my son in your prayers and i will keep you all in mine.....

 

[tjsmom]

my decision has been made and my little man will start felbamate on tuesday dec. 27th. please keep him in your prayers! as we venture into the very scary world of felbamate he will start at .8 mg 3x a day for one week and then increase to 1.6 mg 3x a day. so its very low dose which makes me feel a little better. i will keep you posted as to how it goes.....

 

[Paorrin]

You are in our prayers! Good luck i hope it helps and stops the seizures. And you tolerate it well. I look forward to hearing good things soon.
Robert

 

[minn]

I have been on many different medicines in the past 40 years. I have been on felbatol for 4 years 600 mg 7 pills a day it is a strong but it works.
They changed it to felbamate on Dec 7 2011 and I have had 4 seizures in 3 weeks.
Keep and eye on his weight because my appetite really went down. I lost 25 lbs.
I know everybody is different how the drug will act but keep an eye on his heart beat because mine loves to beat fast since I switched to felbamate.
Good luck and keep us posted

 

[tjsmom]

he has been on the felbamate for a while and i have already noticed a decrease in food intake and apetite i have also noticed a faster heart beat, also i have noticed a couple other things that are weird and i dont know if i should wait it out as the adjustment period or talk to his doctor about it?!!!! his body temp has been running at about 96.4-97.3. also i have noticed a strange twitching in his left arm? wierd, and his seizures there is no difference yet. trying to wait it out, he has been on in for 6 days (our insurance gave us some issues but we got it in the end) should i wait this out or call his doctor? i know that when you swith to a new med there is an adjustment period for the body, but this is such a powerful drug that i am just not sure, i said that i would wait until thursday but i am wondering if i should even do that? idk, all of this is just so confusing!!!!

 

[minn]

I now it is hard for you but I am at the point were I adjust my on medicine.
If you have any question I will be glad to try to help. I have been on 7 different medicines the only one I will never recommend is phenobarbital.

Good Luck
Minn

 

[Paorrin]

Tjsmom i am of the opinion if something is a consern to you then you should contact your doctor. Just leave a message as long as its not an emergency. Good comunication with your doctor is the most important think. Also i woldnt ajust meds without your doctors imput Especialy with felbotol.

 

[valeriedl]

If he's been on it for a while and you're noticing dramatic changes I'd call the dr and find out what he has to say. I don't know if it was felbamate or not (I've been on so many different meds) but there was one where all I did was sleep. I didn't eat or want to get out of bed. I lost a ton of weight. When we told my neruo about this he took me off the med.

I wasn't able to have brain surgery so I had two options, keep playing around with meds or get a vns implant. I knew the vns wasn't a 100% guarentee but it was worth a try.

The vns has helped me a good bit. I'm still having to take meds and I'm still having seizures. The seizures are nothing like before I got it. I was having maybe 3 a week and would end up in the er after alot of them. Now since I've gotten it I'm having around 3 seizures a month and they aren't as bad or as long. I may be having more though because I usually don't know when I'm having one. I spend alot of the time alone at the house because my husband works.

If we catch the seizure in time and use the magnet it will usually stop it. If I'm having one and use the magnet it will bring me out of it alot faster and the after effects aren't as bad.

 

[tjsmom]

thank you all for your comments! i left a message with his doctor and she hasnt called me back yet but i know that she will. he wouldnt eat breakfast this morning, but i got him to eat some salami for lunch. it was only about 4 slices but at least its something! he is asleep now, but i am hopeful that it was just an adjustment period, however there is still no change in the seizures (sigh) but he is still on the very begining dose, and we go up on thursday to 1.6 a day. so hopefully we will start to see a change then.

 

[valeriedl]

Keep calling your doctor until you get a reply. Sometimes it will take them days to get back intouch with you, or sometimes they may not get back to you at all.

I needed to talk to my dr one time about something really important. I waited a day and when I didn't hear anything I started calling the office every hour. I think that they got sick of hearing from me that they went and got what I needed to know and called me back.