Monday, February 23, 2009

Banzel (Rufinamide)...

Banzel is a new drug that just received FDA approval in November 2008 for Lennox-Gastaut Syndrome. So no one has much experience with the drug. Since my local neuro has not put anyone on this drug, he wanted me to asked Dr. Chugani about it.

So I e-mailed Dr. Chugani to get his thoughts on Banzel. This is what he had to say...

"That's a new drug that seems promising. It just came out. I have used it with good success in several children."

I spoke with another mom who put her son on it about a month ago and she loves the drug so far. She has seen no side effects from it. She has not seen a seizure in the last 15 days (the day after he started the full dose).

So we started Sophie on Banzel today**. We start off at 100mg per day and will gradually go up to 700mg per day, if need be. Banzel should be taken with food since it absorbs better. I waited until she got home from preschool and gave it to her with lunch so I would be able to monitor her for any allergic reactions. I made a glass of chocolate milk and let her take a drink through the straw. Then I stuck the tablet into the top part of the straw and she drank it right down. I can't believed it work. I have never thought about it before. Another mom mentioned the MediStraw on her blog but I forgot to order one so I tried with a regular straw. The tablet is perfect size to fit right into a straw without sliding to the bottom. It gets a little stuck so while she was taking a drink, I slightly squeezed the top of the straw and she drank the tablet down without noticing. I hope it is always this easy.


**I was going to start Saturday morning but for some odd reason she threw up. It was right before breakfast and afterwards she seemed perfectly fine. So I don't know if she just gagged on something. I was actually in the middle of cooking breakfast. After I cleaned her up, she kept looking at the food and saying "num-nums" so I let her eat. She ate a lot and has been perfectly fine ever since.

13 comments:

labonte4 said...

I've also heard good things from a local mom who is trialing it. I really hope you guys have luck with it. We are weaning Ava off Keto right now..and the sz's seem to be increasing, so we'll have to figure something out.

baby trevor's mommy said...

Okay so the Medi-straw has been a huge disappointment. It's very chunky...and I think it's just too big for Trev. He's a lazy sucker...and doesn't want to have to work that hard to get a swig. I'll have to try the regular straw idea? Can you not crush Banzel? That'd be a bummer.

Crossing fingers for you guys!

...danielle

Sophie's Story by Elaine said...

You can crush Banzel and mix it with food. I just love the straw idea...wish I would have known about it sooner. Sophie never turns down chocolate milk so it's a sure thing to get her medicine down. Sometimes she is a little weary of food on a spoon.

Heather said...

Hoping and praying for some great results.Sophie sure deserves a break.Hope you are feeling well and ...thanks for the sweet email too.

Anonymous said...

Was looking to see others reactions to Banzel and saw your dilemma about using the pill and straw. Just wanted to share how I medicate my daughter. Over the years I tried to hide meds in foods. That didn't always work because the food didn't often mask the bitter taste. What I found to work like a charm is mixing it with maple syrup (pancake syrup). I'm sure you can use other flavors but the syrup works like a charm.
~Karen
Nerak95@aol.com

Kelli TenHaken said...

I have been reading your blog a little bit because our daughter Ruby has infantile spasms and tonic seizures too. She is almost 12 months old. We have been talking to Dr. Chugani as well about Banzel and we are thinking about trying it. Keep us posted on how Sophie does with it!

Kelli TenHaken

Benton Family said...

Our daughter was recently put on Banzel...we were in remission from Infantile Spasms, but we aren't any longer. We are experiencing awful side effects from Banzel and I was curious if you had yourself with your precious little girl.

Your family is in our prayers.

~K

Sophie's Story by Elaine said...

Benton Family...I am so sorry that your daughter is no longer seizure free. I know how difficult that is. As far as Banzel...what kind of side effects is she experiencing? Sophie seemed to regress while on Banzel but once we weaned, her development seemed much better. She also seemed a bit more wobbly. Do you have a blog page?

LadyKyle said...

My daughter is 24 and has uncontrolled seizures. She started with infantile spasms at age 2 weeks. She has been on many meds over the years. Her neurologist has recently suggested Banzel. She is currently on Dilantin, Klonopin and Topamax. Any help would be greatly appreciated. Is Sophie off Banzel?

Anonymous said...

My son has been fighting with epilepsy (petit mals & grand mals) for almost 10 years. We tried every drug we were offered, even did vns implant. We were offered banzel as a last resort and he has now been seizure free for 3 months. This is the longest we've went in 4 years. We have even weaned him half down off depakote with intentions of eliminating it altogether. His attitude has improved since we switched and he is for the first time since kindergarten getting good grades. It's been a miracle for us. I only hope his body doesn't figure it out and start seizing again. I was searching for other success stories. Good luck to us all!! www.aaronsbattle.com

Kaylie and Shailyn said...

hello i just found ur blog.. my daughter started having seizures at 5 months old.. was diagnosed with infantile spasms at 14 months old.. and at 3 yrs old was just diagnosed today with LGS.. She is taking Zarontin, depakote sprinkles, and banzel.. her neuro is having a hard time controlling her seizures.. so her meds slow her seizures down so shes able to function throughout the day.. I give her all her medications in applesauce.. She LOVES it!!! i like to do cinnamon applesauce so that the medicine flavor isnt all there..

Anonymous said...

My daughter is 31 and has had uncontrolled seizures all of her life. At age 30 they tagged her with Lennox-Gastaut. She had pancreatic failure and nearly died from Depakote/Valproic Acid this spring. She takes 5 seizure meds and had tried all of them. She was in status for weeks in the ICU. Then they added Banzel. It didn't do much until we got to 1600mg/day. For the first 3 months, she vomited everytime we administered the dose. Now, she has built up a tolerance to it. And best of all, the best seizure control of her lifetime. 1-2 seizures a day on a normal day. Still clusters with illness and etc, but normal days are pretty quiet now. She also takes Dilantin, Clonazepam, Keppra and Felbetol, but those four drugs don't touch her seizures. She needed the Banzel. Now we are looking at trying to remove a couple of the drugs. Negative: Banzel does not have an IV form! It is worth a try but there are humps to get over to get to control. Good Luck

truth Jacobs said...

Not sure if anyone is aware, but my son takes Banzel in liquid form, and it works well. My son has atonic or drop seizures and it has controlled them.