~seizure FREE me~

~seizure FREE me~

Thursday, April 28, 2011

The power of candy

So.... all my hard work was almost challenge in a split second.

I had to take our van in for some work and the place we went happens to be in our mall. So during the hour and half wait I took the kids to the play area in the mall. My nightmare as I am not a mall person AT ALL. The kids were having a blast though, running around, playing on the toys, and with the other kids. Toward the end of our time there Atty and his brother were talking to some other kids and their parent. I was watching them and helping their baby sister on a toy. I look up at them, then down to Lala {nickname} and then back up at them. At that moment I realize that Spike {nickname} is putting something in his mouth and Atty is about to! I said "Atticus Stop" sternly and loudly so that everyone was looking at me. It was a bit embarrassing but I need him to understand the importance of what I was saying. I called him over and in his hand was a candy! Candy, the thing I have been strictly avoiding because of his diet. The last place on earth I thought he would get his hands on something restricted was here. Really it hadn't even crossed my mind, and I'm normally on high alert for this sort of thing. You are not even suppose to have food or drink in the play area! All the get togethers we have gone to where I have followed him like a shadow making sure to tell people about his diet and enlisting others to help me keep an eye on him. All the get togethers we have skipped to keep the stress of the diet down. I was in shock. I quickly took the candy away {It was just a little thing, but after coming so far on this diet I refuse to risk it.} and told him why. Briefly and to the point, then I let him know that he could have one of his treats when we got home. He accepted this and didn't throw a fit or anything. I would have understood if he had, because he hasn't been handed candy in a year and he is a kid after all! Candy is candy, and we all love it and one point or another. I was so proud of him. Because I was in shock and because I'm too freaking polite I didn't say a thing to the man who gave them candy. He didn't speak a lot of English anyways so trying to explain Atty's diet and all wouldn't have worked out very well. He seemed really sorry and said so, but I just could not believe that he gave anything to my kids! I sort of thought it was an unspoken rule that you don't feed other people's kids. The part that really upset me the most frankly was that they even took candy from a stranger in the first place. I know I was there so they felt comfortable, but we have had so many talks about this sort of thing. To see how easily it is all forgotten is disturbing! We had a talk about it after leaving and will be discussing it daily for a while to really sink some lessons about strangers into their little heads. I'm not one for scaring my children about strangers, but I do believe in teaching them about stranger safety. Which is why I was so upset at how easily they accepted something from a stranger. Candy, it is powerful and that power is scary!

Wednesday, April 27, 2011

Keep it going!

People are talking! Keep spreading the word!


I was so excited to see this, and I have to tell you it made me cry as I watched. It's still all so fresh to me. The whole thing is so amazing and I know that there are other children out there that could have their world changed for the better because of this diet! So lets keep talking!!!

Tuesday, April 26, 2011

Beautiful miracle

Last Easter.This Easter.
What a beautiful miracle, I am one happy mommy. I could hardly get a picture of him as he raced around with his brothers looking for eggs and talking a mile a minute. We did a candy free Easter, although I did make him some really cool treats that were almost like peanut butter cups and he loved them. I got his brother some bulk treats like yogurt covered raisins and chocolate peanut clusters and Atty didn't seem to even notice. I knew if I stayed away from the shiny wrapped stuff he wouldn't care as long as he had a treat of his own. I mostly put toys and trinkets in the baskets and they were all happy. I loved celebrating Easter this way as I've never been big on the candy and junk... I'm sure at this point that even if Atty no longer needs the diet at some point in the future {it does happen} we will still celebrate holidays with a lot less junk. We did decorated boiled eggs and a few plastic eggs with money for the egg hunt. It worked out beautifully. I have now done every major holiday on Atty's diet, success!!! It feels wonderful. :)

Monday, April 18, 2011

Last One!

Atty had a follow up appointment at Children's today and it went fantastic! We are now going down slowly on Atty's last medicine and if all goes well he will be medicine free by mid June!!! He's not had a single reaction going off any of the other medicines so far and I pray that it will be the same for this last one. I'm so nervous. In a good way. I'm excited but a little scared, just because everything is going so well now, and the unknown is well, just scary. But I feel confident the it's the diet that is the main factor for Atty. That has been proven with out a shadow of a doubt, even for the doubters. There are kids who can go medicine free because of the diet, and I just hope and pray that Atty is one of them. It's a big leap of faith. BIG. We are ahead of schedule for going down on the last medicine. At first his main doctor said he would want him on medicine for two years, but he has amazed every one so much at Children's that this time his doctor felt confident enough to start the weaning process.

His doctor said today that Atty should be the poster child there, his story is so amazing {except that would give them all the glory and I don't think that's really very fair, after all we went through there with them... it was I after all that suggested the diet to them}. To see him before and then now... wow. He was unable to speak and practically unreachable for a moment there. Now he's talking non-stop. Some times it about takes my breath away. I'm working on a video to show at his big party next month. Celebrating being seizure free for one year on his MAS diet. It starts from the beginning and is full of photos, videos, music and stories and every time I watch it or edit it I start to tear up. He has been through so much, and has come so far in this last year. Once I get it done and shown to close friends and family I'm going to try and figure out how to post it here, or link to it some how. It's sort of long though... going on over 1/2 an hour at this point... there's a lot to tell! :)

I mentioned to the dietitian that I had lots more recipes to share and that I really should write a book {I've been mulling this over, but I'm not much of a writer so the idea seem a little out of reach for me...} and she said if I wrote it people would buy it. There are books on the Ketogenic diet but nothing on the MAS diet that I'm aware of. It would be great to help other parents out there starting there kid on the diet, or even just to get the word out there about the diet so that parents can learn about other possible options. I want to share the joy I feel with some other desperate parent. I just want the Modified Atkins for Seizures diet to be common language for people, I want to say it casually to someone and have them say "Oh yeah I heard about that from my neighbor" or even better "Oh yeah I read your book on that" Ha ha!!