Hello, My name Is Lisa, I am a wife and a mother of two super boys. Nicholas is 13 and suffers from teen OCD. Dylan is 9 and has epilepsy. When First diagnosed Dylan was having 20-30 seizures daily. He has been on several different medications and had bad side effects with them all.
He now has about 3-7 seizures daily and is on 3 different medications. As I write this I am sitting in his hospital room with next to him. He is being evaluated for possible VNS. As you all know it is a aconstant rollercoaster ride when you have epilepsy. Through our experience we have learned so much. I started a local epilepsy support group. I have written several articles for magazines and newspapers to help spread the word on epilepsy.
My Biggest accomplishment was a educational childrens book I wrote on epilepsy. Through His Eyes talks about the hospital, 911, medication, side effects, school and the feelings the individual and the family goes through. It is the kind of book I needed when my son was first diagnosed. The National Epilepsy has approved this book and even sell in on their online store. This book has helped so many already.
We need to help spread the word on epilepsy, We need to help eduated people. If you would like to order the book titles Through His Eyes. If you have any questions feel free to email me at ny2ga67@aol.com .
Book on Epilepsy
Hi Lisa,
Looks like a good book which would talk about the experience of dealing with epilepsy. I put a direct link to it above.
You have obviously been through alot - like many parents. I must say though that it really concerns me that your son is on three medications at once. The risk of side effects significantly increase when you add a second and third drug. One drug therapy is always best but did not work for you.
Have you tried the Ketogenic diet? The VNS seems like a drastic step if you have not tried the diet yet. I get so many success stories now coming in as the diet continues to be improved. My son Adam has been seizure and drug free for over 10 years because of the diet and we tried 6 medications and combos with no results. In fact the medications made his seizures worse and the side effects were horrible. I am sure I don't need to tell you about side effects.
If you have not considered the diet, listen to my podcast with Jim Abrahams from the Charlie Foundation to find out more.
I wish you the best!
Warmly,
Arlene Martell (Mom of Adam above)
Publisher, EpilepsyMoms.com
Trying everything
We were in the hospital last week for an evaluation for the VNS. It turned out that he is not a candidate. Since he has generalized epilepsy they don't think it would be helpful to get the surgery.
His Neurologist has never mentioned the diet to me. However I have done my own research and attended a group where they were discussing the Ketogenic diet. They all said it was really better for younger children to do this diet. A child my sons age they recommended the modified atkins diet.
I have an appointment with his neurologist this Friday I will bring it to his attention. He started wetting the bed now at night. It happens once a month. The Epilepolgist said that usually happens when the seizures are a little longer during the night. I hate that he has to take so many meds.
With Juvenile Myoclonic Epilepsy you don't out grow it. So I am guessing he will be on meds for the rest of his life. I am happy to say that my book Through His Eyes has been a great success. In 2 months the book sold over 70 copies already. So happy that this educational epilepsy book will help many families.
What age to start the ketogenic diet
Hi Lisa,
You mentioned that Dylan was 9 years old. It is at the later end of when kids start the diet, but Adam was 8 1/2 when he started and was on it for 5 years so don't let his age deter you.
The theory behind starting younger is because with an older child, their eating habits are too established and may have a harder time switching to this food options change.
You could start out trying the modified atkins and see if he has a reduction in seizures. If he does, I would go on the full ketogenic diet. It is only for two years and it goes by fast. Adam needed it longer, but that is not typical.
The modified atkins also puts them into ketosis and has been very effective in treating epilepsy in adults. But you dont need to measure anything. I Have a site you can go to to get more information:
http://www.atkinsforseizures.com/story.html
I wish you both the best and let me know what you decide to do and how it goes!
Warmly,
Arlene Martell (Mom of Adam above)
Publisher, EpilepsyMoms.com