Update on Braydon...

I hate to come with bad reports but the fact of the matter is Braydon's seizures and side effects from the seizure medication is at an all time high. He is still having, despite being on 825mg of Depakote daily, about 4-8 seizures a day. The medication is causing lots of sadness, frustration and confusion for Braydon. He's not sleeping well, his stomach is upset half the time, he has big dark circles under his eyes. He is an emotional roller coaster and it's causing lots of stress in our home right now. I know he can't help it and this is all just so frustrating.

Because we have tried three different seizure medications and seen only temporary and minor changes in the seizure activity, I talked with the doctors about our next step. They just want to try a new medication and I'm not okay with continuing to put him on meds that make him not himself. I hate how these meds make him feel. He is just not the Braydon we all know and love on these medications. So I started researching and trying to find alternative treatment methods. I've come across something called the Ketogenic Diet (click to see info).

It's a method based solely on diet changes and was discovered in the 1920's it's been used (but not by many doctors) to treat seizures since then. The diet originated at John Hopkins Hospital in Baltimore Maryland. Of the patients who have tried it 1/3 of them are completely relieved of their seizures. Another 1/3 of the people who try it, see a signifigant decrease in their seizure activity. I say 2/3 chance of at least seeing a decrese are pretty good odds. But because doctors say it hasn't been scientifically proven through double-blind studies-most of them won't touch it and prefer to use mind/mood altering drugs and surgery to correct seizures. There are only 5 doctors in the state of Texas who practice this method. I have found one in Dallas and am working on getting Braydon at appointment as we speak. The first appt. will simply be to get more information and to make sure this is the right thing to do for Braydon. As in favor of doing something "alternative" as I am right now, we still have to make sure this is safe and the best thing for him. I say it's at least worth checking into.

The diet is hard-very hard. In fact, the first week of the diet has to be in a hospital setting for medical monitoring. The first phase of the diet mimics starvation (fasting for two days-water only), hence the reason why he will have to be so closely watched. But after that first few days, the food list increases. But if we choose to do it, we will have to follow this high fat diet that requires constant measuring of specific foods for three years. It's a big committment to make. But if it helps this child-it will be worth it.

While researching this diet, I discovered that there was a movie made (true story) back in 1994 with Meryl Streep. It's about a boy whose life was literally saved by this diet. He did the diet for three years and has never had another seizure or ever been on any seizure medications since. I ordered the movie when i learned about this and watched it the other night. If any of you want to see a good movie, or learn more about this diet, I STRONGLY encourage you to find/check out/ or buy the movie "First Do No Harm".

It was during the watching of that movie that I decided this was DEFINITLY going to be the next treatment option we checked into. I'm sure you can imagine how we've prayed over this last nine months for God to heal him and help us make the right decisions medically and so on. We have looked to Him for all the answers and healing in this situation and still do. During this movie I learned that in Matthew 17, when Jesus healed a man of seizures, He says, "it is through prayer and fasting that you are healed". We just felt like that spoke loudly to us about this being the best next step. We have been doing the prayer and then this diet is the "fasting".

We are hoping that God opens this door for us to do this. If He does, we WILL do it no matter how hard it will be and we will be counting on and claiming the fact that healing WILL come to Braydon through prayer and fasting....

PLEASE be praying with us!