I am writing ot tell the story of my 3 year old. Her name is Lola and her epilepsy is getting worse since first being diagnosed in January 2009. She has complex partial and simple partial seizures. She was started on Depakote 2 weeks ago after having a horrible reaction to Zonegran which almost put her in the hospital. Her doctor failed to tell us that a small percentage of children have a reaction to Zonegran which worsens their seizures, which is what happened to our daughter. Her seizures went from lasting 30 secs. to a minute to now well over 5 mins long. This progression has been since her first diagnosis in January.
SHe is on her 4th neurologist and her 3rd medication. I wish I had found this website before I started her on the depakote. Her neuro put the fear of death in me that she needed the medication. I have been snubbed twice when asked to try the ketogenic diet. Two different neuros told me it wouldn't help. My daughter is a zombie and so emotional. She's scared to try new things and seems to live in her own little world. I have taken all of her medical records from all of her previous doctors and she currently does not have a doctor because Im sick of her being a guinea pig for them when it comes to meds. She can't read the books she used to know front to back a couple of months ago because her memory is so shot. Im frustrated and have even stopped working because I want her to be properly cared for. I have been waiting for months and finally got her accepted to the UCLA center for epilepsy. Has anyone had any good experiences there? We are going to see a Dr. Jason Lerner.
Is it time to try the Ketogenic diet?
Hi Lindsey,
I really feel your frustration and remember well being in exactly your position. Adam was not responding to medications at all and the doctors just wanted to try more medications when his seizures were so out of control. I wanted so badly to stop the medication and thank goodness I found the ketogenic diet.
I honesty hate to think of where we would be today without the diet and I thankGod everyday for bringing it to me. Adam is seizure and drug free and the doctors said it would never happen. I believed it would happen. I knew it was what we were looking for. Once I did the research I was convinced and was surprized to learn that it is more effective than medication. I encourage you to try it - you will never know until you do.
You have to listen to my 3 audios on the ketogenic diet. One is from Jim Abrahams, founder of the Charlie foundation, one is from a mom with a toddler on the diet and the last one is from a GP with a child on the diet. Find them all here.
I also strongly encourage you to look into neurptherapy. It is the second treatment that had a tremendous benefit for Adam to kick started his brain again. His learning had completely stopped and he regressed while on the medication. Dr Swingle was able to unlock the brain and amazing learning happened again as well as huge improvement in behavior. Be sure to also listen to the podcast I did with Dr Swingle on Neurotherapy to find out how it works.
Please let me know how it goes and what decision you make. I know it is very tough to go against your doctor but remember that you can only try the medications for so long, then it is time to try something else.
Warmly,
Arlene Martell (Mom of Adam above)
Publisher, EpilepsyMoms.com