Submitted by staceylynn on Thu, 04/16/2009 - 07:03.
My daughter just started Banzel 2 weeks ago. I was reading the info on Banzel and it says it is a drug used to treat Lennox Gastaut syndrome. My child has absence seizures only. Is Banzel only for Lennox Gastaut syndromes? Does this mean my child has this syndrome? Also, since on Banzel seizures are worse. We are moving to Oklahoma soon. Where is the nearest place to start the Ketogenic Diet? Should we go to Hopkins in Balitmore to start the diet?
Starting the Ketogenic Diet
Hi Staceylynn,
I am sorry - I am not familiar with the medication Banzel - it must be a newer drug. What I would do is ask your doctor directly why it was prescribed. I would also call your pharmacist and ask some questions about it.
If your daughter had Lennox gastaut, she would have multiple seizure types - not just absence seizures. From my own experience I was always so frustrated when they wanted to start a new drug because when they did - thats when other seizures started for Adam that he did not have before and things just got worse. Eventually he was diagnosed with Lennox gastaut.
Please get on the ketogenic diet asap. Yes, go to Johns hopkins - they are the masters. If you live anywhere close to there, that's where I would go. If you do not live close, go to the Charlie Foundation site and there is a list of reputable places you can go.
If the diet does not work right away - do not give up. Start tweaking! Change some foods, change some brands. Make it as simple as possible. I have had moms tell me it took 6 months to get it right but it was worth all the effort.
Please keep me posted when she starts. I would love to hear back from you.
Warmly,
Arlene Martell (Mom of Adam above)
Publisher, EpilepsyMoms.com
Banzel & Ketogenic
My daughter, age 8, has been on Banzel for 12 days and (knock on wood), seems to be doing very well with it. She is also on the Ketogenic Diet. We started that on June 1st. She has many types of seizures and is diagnosed with Tuberous Sclerosis. We know she has 4-5 tubers in her brain. She is highly functionable (according to the neurologists), but has been bothered with daily seizures which have not been controlled for well over 3 yrs. now. At the beginning, they were only brief absence seizures and a low dose Depakote worked to control them for 18 mos., then they've just gotten progressively worse. We have been through 12 seizure meds. The diet helped with eliminating her night time seizures and cutting her seizures in half during the day. We took her off of Depakote in September and started her on Banzel, Oct. 31st and we are still continuing with the diet. Except for a bad day shortly after receiving the H1N1 shot, she has had many day with no seizures. Something we haven't seen in years. Hope it continues. Right now she is taking 1/2 Banzel AM/1 full PM with no side effects. Don't know if it's the Banzel alone, or in combination with the diet. We will wait a little longer and possibly wean the diet to see if it's the Banzel. She was on the diet alone for 5 months and we did not achieve complete seizure control. After such a long time, it's so hard for me to believe that something might actually work. I've had my heart ripped out too many times in the past getting my hopes up.