Our needle in the haystack!

My daughter, Meghan was diagnosed with Epilepsy 12 years ago last week. Thinking about those 12 years becomes very emotional! When I think about all that Meghan has been through and our whole family has encountered it becomes very overwhelming. We did all the conventional Epilepsy treatments including: medications(I think we have been on 15 drugs), Ketogenic diet, modified Atkins diet, VNS(vagus nerve stimulator), and brain surgery. With every new treatment we hoped, prayed that this one would be the one that would work. We would go through the honeymoon period, that Meghan would be better and then it would all go back to what had occurred or worse. It painstakingly slow when we decided to change medications, treatments. You see, Meghan was very sensitive. I am talking sometimes when we changed medications, or treatments she would be worse. I remember thinking to myself I am doing this to her! How can these treatments that are supposed to help her make her worse. It doesn't seem right. I, found my gut and acted on it.

Fast forward to 2006 was when our world changed. We decided to take a different approach to her Epilepsy and begin homeopathy. I give me dear friend Elizabeth the credit since she referred us. This was her homeopath and was seeing good results for her daughter that also had severe Epilepsy. Our mindset changed with this new treatment. It was not miracle by any means that she was cured or talked. It took years to see results but what we saw from homeopathy, was that it helped jumpstart her immune system. Her colds and sicknesses didn't land us in the ER anymore and she was able to fight off illness better each year. At the same time coordinated carefully we started working with a Dan(defeat autism now) doctor. We began our journey with supplements, allergy testing and blood tests. As we began adding these supplements into her already complicated regime I really didn't see a big change. I questioned myself and why we were spending all the money on this treatment. But what I found in 2010 was nothing short of a substantial needle in a haystack. My Dan doctor had talked to me and told me in the very beginning that he thought she had inflammation. Ok I said what do you do about that? So we tried yeast protocol which landed her in the ER because of a full body drop and 9 stitches. We tried that 2x each time huge reaction. So in the summer of 2010 we did a trial to see if we would see a change in her seizures. Well you guessed it we did. A 50% reduction. So for the full week we went from 14 seizures a week to 7. We couldn't believe it. We began the slow process of getting her on non steroidal anti inflammatories. It took all summer to get her on it and she reacted with every increase, but we kept with it. 2 years later we are still seeing the payoff of 50-70% reduction. During this time we continue to see our neurologist who at first wasn't really on board. He is a very open minded physician actually the first one that would listen to some of the alternative treatment. He told me it wouldn't hurt but probably wouldn't help! As he saw the months turn into years he is now a believer. We think this is huge! Incidentally that year at the American Epilepsy Society meeting inflammation was in several of the presentations. Now as I listen to webinars, read articles from physicians, inflammation is mentioned very often. We don't have anymore treatments from our neurologist but as the Epilepsy community does their studies and the results come in maybe we will have more meshing of physicians from the Autism and Epilepsy world.

I tell you our story because it wasn't something anyone mentioned for 12 years in the Epilepsy arena and maybe it would help your child. I'm not sure if the Autism is part of it or not but finding a doctor to be willing to try it would be worth it.

I feel that this treatment is giving us a clue maybe testing, additional treatments or diets that will further help her have even less seizures! If I knew then what I know now I would start the alternative treatments sooner and finding a neurologist that was open minded to all of this. They are hard to come by but finding one is essential for our kids, adolescents that are not responding to conventional Epilepsy treatments.

I hope you will keep looking for your needle in a haystack and never give up!