Overcoming Epilepsy

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

LivingFruity

LivingFruity

New
Messages
195
Reaction score
0
Points
0
My son Elijah was diagnosed as having a mild form of cerebral palsy in January of 2003, when he was just shy of 2 years old. Developmental delays in his motor skills led us to several doctors. Many tests later revealed that he had suffered a stroke while developing in the womb. This stroke damaged his brain on the left side and effected his motor skills on the right side of his body. Once we had our diagnosis, he went through much therapy and developed into a bright, compassionate, healthy child.

In June of 2004, Elijah had his first seizure. EEG's didn't show anything unexpected, so it was dismissed as an isolated incident. In October of 2006, Elijah had another seizure within 10 minutes of falling off his bicycle and suffering a concussion. It was thought that the concussion caused the seizure.

May and June of 2007 brought on two more seizure episodes and a diagnosis of epilepsy. Doctors believe the stroke left him predisposed to developing epilepsy. His doctor wanted to begin medicating, but I was hesitant. I'd been researching a lot into nutrition and the role it could play in Elijah's situation. The doctor agreed to give it 6 months, but said that he would start the medication if Elijah had another one within that time frame.

We changed his diet, and every member in our household made the same dietary changes as well. The health of our entire family greatly improved and Elijah was seizure free for almost 19 months.

We were visiting with family over the 2008 holidays and surrounded by all sorts of foods that aren't normally available in our home. I was feeling guilty for "depriving" my children of indulging in various treats, so I relaxed and allowed Elijah to have foods that were previously restricted. We arrived back home late at night on the 1st of January. Elijah began having seizure clusters the next afternoon. After being rushed to the local ER, he was medflighted to the nearest Children's Hospital. This time the neurologist wanted to start him on Keppra. He totally dismissed my explanation that this was food and nutrition related.

We've since found a new doctor who is working with us to find a natural cure for Elijah's epilepsy. He's back on his diet and doing great! I'm also documenting our experiences and his therapy on my blog called Overcoming Epilepsy at www.rawepileptichealing.blogspot.com

I apologize for such a long introduction :rolleyes:

~Sarah
 
Last edited by a moderator:
*chuckle* Hi Sarah! Welcome to CWE. :) I'm sure you'll bring alot to our discussions. :) Feel free to ask questions, chime in, or just vent. E can be frustrating. :) Also, check out the library here. There's info about Diet and epilepsy there. Oh, and if you get a chance, you probably will want to talk to Robin. :) She's our major Diet advocate...*chuckle*....
 
Thanks! I'll be sure to check out the Library and introduce myself to Robin :)

P.S. I love your dancing chick!
 
Hi Sarah - Welcome

I sure wish everyone here was a "nutrition" advocate :bigsmile:

Just from what you have written, it appears quite evident that nutrition has played a huge part in your son's seizure control. I bet you have saved him from other health related issues too.

I do not understand why more are not willing to trust this. Far too many are simple addicted to their lifestyles of choice. Even when it will most likely help their health. We all wish for health on the New Year, yet we are unwilling to make the needed changes.

I am glad that you are here. I hope you share some of your nutritional choices with us.
 
Robinn, some of us are not willing to give up french fries, sugar cookies, german chocolate cake with that rich coconut glaze, milk shakes, donuts, etc.... :) But I must admit, I have taken to eating a healthier diet....and honestly, if I could get my hubby to eat the way I would like, we'd be eating a much healthier diet. :) So, I'll keep working on it. Just be pacient. :)
 
At one point in time I was totally addicted to all the refined carbs (pastas, fries, breads, cakes, cookies, donuts, brownies, etc). I wouldn't have thought of giving up my 10+ cups of coffee a day habit. I could go on and on about how unhealthy my daily diet was. I started researching nutrition a couple months before my son was diagnosed with epilepsy. Someone had planted a thought in my mind and I just had to search it out. The more I searched, the more I learned. The more I learned, the stronger the desire to do something about the life I was leading. I was tired of being obese. I was tired of not having the energy to play with my children. I was tired of the hormonal issues I was having. I still didn't do much other than study and share all this new health and nutrition related information with my husband and children. We agreed that we would make changes as a family. Elijah's diagnosis of epilepsy came around that same time and was just the catalyst that pressed us on. It didn't take long and my addictions and cravings were completely broken. Now the smell of some of my old "favorite" foods aren't even appealing. The health benefits that each member of this family has experienced is amazing. My husband's blood pressure is normal now (no meds). My hormones are regulated for the first time in years. I'm no longer anemic. Both hubby and I released all the excess weight we were carrying around. We've all gone almost two years without getting sick with flus, viruses, or infections. Our energy levels have increased. Even Elijah experienced benefits related to cerebral palsy as well as being seizure free while sticking with our new eating lifestyle. I really have no doubt that nutrition plays a great role in the quality of life that we have.
 
Last edited:
Thanks for the welcome, Bernard. It's great that some of the medical community is picking up on the importance of nutrition. My son now has an excellent doctor who's nutritionally minded. It's been a great relief to find support in our local medical community.
 
Dear Sarah,
Congratulations, you're a wise and strong parent, which has the courage to take the hole responsability and take the best decisions for her child. Nobody will care as much as you do, a doctor the least, and I speak from experience. Thank you for introducing us to the book on excitoxins, I just started reading it yeasterday, I'm sure I have a lot to learn from it. My 19 month old daughter had 3 seizures at interval of 5 and than 8 weeks. She's been put on Depakine after the second, obviously hadn't help not to have the third. Now it's been 10 weeks after the last and I'm counting each day. I don't have you're courage to take her off medication, she had status epilepticus twice that lasted 45 minutes... I'm really concerned about the medication, we don't see any changes in her behavoiur, but didn't read any good things about it. I only hope she'll be seizures free for 2 years and we'll stop gradually and she'll be ok.
We have went part-time, so to name it, on the GARD diet, she's still small and she needs the milk; we're diluting it a lot, we tried to stop, but she would wake up hungry in the night. The goat milk-based formulas around have maltodextrose, so that's out of the question. We all it lots of fruits and vegetables, for the kids they are always steamed, we gave up all other milk products, we never had soy products, and no processed food, and everything it's biological, at least at home. At the creche it's a different story, fortunatelly they don't get too much food there, but it's cheese spread and yogurt and some cookies and fruits, obviously not organic. They don't alow for the parent to bring different food for their child :(
I don't even know why I have this post, I guess I hope for some incouragement from somebody which does better than me? I certainly wanted to thank you for your example.
I was lately pretty discouraged, since I've ordered so many books that I don't even have time to read, so we should gather so much important information, we made only good changes - I would hope, at least - and yet I was hit by flu and I'm still not entirely well after 2 weeks. I guess I hope for too much, huh? Or to be positive about it, I should think it was just another test, I just have to stick with the changes and things will improve.
Anyhow, all the best to you and your wonderful family. In time I hope we'll be able to say that we did take the entire responsability for our girl's health in our hands and we did it for the good.
Dana.
 
Thank you for the encouragement, Dana, and for introducing me to your family. It sounds like you are making some wonderful changes. Don't feel bad because you haven't accomplished as much as you would like to, you have started and that is great. Deciding to be proactive and taking responsibility for your daughter's health and the health of your family is inspiring :clap: Taking things one step at a time is best, considering your daughter has already been medicated. One day you may reach the point where she is ready to come off of the medication entirely. Keep up the good work :)
 
Dang it Sarah, I thought I had already welcomed you! Anyway, better late than never.

WELCOME :D (even though I feel like I've already gotten to know you). ;)
 
You must log in or register to reply here.
Back
Top Bottom