~seizure FREE me~

~seizure FREE me~

Tuesday, December 20, 2011

Almond flour biscuits

Biscuits!

Okay here's another one...

2 1/2 cups blanched almond flour
1/2 tsp sea salt
1/2 tsp baking soda
1/4 cup oil of your choice
2 eggs
1/2 cup *coconut milk unsweetened
8 drops stevia
8 drops lemon stevia
{or just 15 drops stevia}

*Depending on where you are in the diet, you could also add 1 tsp freshly squeezed *lemon juice. If you do that it would be 15 drops stevia and 1 tsp lemon juice.

Preheat the oven to 350 F. Line a large baking sheet with wax paper.
In a large bowl combine the almond flour, salt, and baking soda. In a medium bowl whisk together the oil, eggs, coconut milk, stevia {and optional lemon juice}. Stir the wet ingredients into the almond flour mixture until combined.
Drop the batter in large spoonfuls about 2 inches apart onto the baking sheet.
Bake for 15-20 minutes. Let cool briefly on baking sheet and then serve.

*Don't forget to count the carbs! If you want this to be a carb free biscuit just use water in place of the coconut milk and leave out the lemon. :) Less yummy... but less stress. And a limitless food, which is always good on this diet! At this point in Atty's diet I don't stress over the carbs in his biscuits any more, he doesn't have any reaction and I always pile on coconut oil or cashew butter on top for added fats. If I was adding say chopped fruit I would carefully count the carbs... but that has more to do with the sugar content. I don't worry about sour fruits anymore.

Monday, December 19, 2011

Almond flour bread!

Best Almond flour bread ever! :)
{I've actually already posted a bread recipe before, but this one is even better... haha!}
3/4 cup creamy cashew butter {or any nut butter you like}
4 large eggs
1/2 cup blanched almond flour
3 *tbsp of flax seed meal w/ 3 tbsp of water, let sit for a couple minutes to thicken
Update: I use to do the flax mix separately but now I just add it into the wet ingredients and let it sit in there for a couple minutes and it works just fine. You can also reduce the flax to two tablespoon if you want to with out messing up the bread, less carbs that way.
1/2 sea salt
1/2 baking soda

Preheat oven to 350 F. Grease a 7 by 3 inch loaf pan with oil {like grape seed, olive, or coconut} and dust with almond flour.
In a large bowl mix the nut butter with a handheld mixer until smooth, then blend in the eggs. In a medium bowl combine the almond flour, flax/water mix, salt, and baking soda. Blend the almond flour mixture into the wet ingredients. Pour the batter into the bread pan.
Bake for 40-45 minutes on the bottom rack of the oven. Let the bread cool in the pan for 1 hour.

*Don't forget to count the carbs in the flax meal! I don't do this for Atty anymore because he doesn't have any reaction and hasn't for about a year now of eating this bread... but if you are being careful of counting everything still then preslice the bread and split the carbs per slice to figure it out.

Makes a super yummy sandwich with some cashew butter in between two slices... one of Atty's favorites.

Monday, October 24, 2011

Sirens

When I am driving if an ambulance goes by with lights and sirens flashing it still chokes me up! My heart starts to race and I get a lump in my throat, my eyes moisten, I start to breath faster and my mind begins to race. I instantly flash back to the {multiple} ambulance rides Atty and I {and baby sister} went on during his seizure episodes. The feelings that I felt then come crashing over me again. Fear, confusion, frustration, that broken inside sensation. The non-stop begging and praying that was going on in my head, and frankly out loud at times as well. I can remember him clearly laying on that big gurney, showing how little he truly was. Looking so vulnerable. The eerie lighting, the sires sounding as we speed down the freeway. The paramedic attending to his needs. Talking to me to try and distract me from my obvious impending nervous break down. {Although I never did break down in front of any of them, I know I was teetering at moments, especially in the dark of the ambulance when I couldn't stop the tears from coming.} I would sit there and tell him over and over again that mommy was right there, don't be afraid, we will fix this, I love you, it's going to be okay. I just wanted him to hear my voice and know that I was right there. The fear that I felt in those moments of uncertainty still overwhelms me. Our lives when from normal {what ever that is} to absolute turmoil in the blink of an eye. It was so fast it was hard for my brain to catch up. I felt like I was having a horrid night mare so many times through that whole process.


So now we are on the other side, I know this when those feelings wash over me, and it still doesn't make them any less raw. They still hurt. But only for a moment. Then I glace into the rear view mirror and see the smiling face of a healthy happy boy and I remind myself of how far we have come. And I'm so glad that in the end I could keep those desperate promises.

Monday, August 29, 2011

bye bye curls... hope to see you again soon.

When Atty was on all of his medicine for seizures his hair started falling out. It started to look like he had a comb over. So we shaved it. For me it was a sad moment to shave off all his beautiful red hair, and I shed a tear or two. First it had been covered with the helmet when he was having all the drop attacks and then shaved. It was hard to get use to, not seeing all that red hair all the time.Then as he got healthier and healthier and got off all the medicine his hair grew back. Boy oh Boy did it grow back, beautiful, curly red hair. It became a sign of health for me, all that beautiful red hair. I let it grow, and grow, and grow.
The other night I gave my husband a really short hair cut {I've the official hair cutter in our family} and the boys decided they all wanted their hair cut like daddy. Including Atticus. My heart sank. I'm not one to care normally whether my kids have long or short hair, or even what clothes they wear, etc... I like to let them make those choices for the most part. But I'll admit Atty's long hair had so many meanings to me... I was definitely more attached to his hair then he was. It was sort of funny because my husband was trying to talk Bubu out of cutting his hair, he likes it longer, and I was trying to talk Atty out of cutting his. But in the end Bubu had some words of wisdom for us. He said "it's just hair, it will grow back". He's right of course... my wise son. My daughter also wanted a hair cut, but it's taken almost two years to get the tiny bit she has so I'll admit I gave her a fake hair cut... which made her happy, so all is well. Funny thing is Atty went last, because I tried to avoid it to the very end, and when he sat down he said "mom I don't want my hair cut like baby sister, I want it cut like Bubu". Smart little kid. :) And you know what I probably would have tried that if he hadn't called me out on it. That's what I did on the last round of hair cuts. It worked that time, but he let me know in no uncertain terms that it wasn't going to work this time. So I took a deep breath, cut his hair, shed a tear and saved some curls. And we move on, it's hair... it will grow back.


And all that matters this time is that he is healthy, short hair and all.



Thursday, July 28, 2011

Pinata, pinata, pinata...

We went to a family birthday party last weekend. I was told ahead of time that there was going to be a pinata, and his auntie said that she would buy Atty some special little toys to make up for the candy he can't have. Which was very sweet... I am thankful to have such supporting family members through this whole thing. The only problem left was how to deal with the pinata it's self. Should we take Atty somewhere else during that part? Should he just stand and watch? Should he participate and then give the candy to auntie for a trade? Everything else I had covered, I made him his special cupcakes for cake time, and I made him his type of bread and crackers, I packed his bag full of his type of food. But I just wasn't sure what to do at pinata time... I don't want him to feel left out, the magic diet already draws attention to him and has the potential to make him feel like he's on the outside of the group. So in the end I decided that if he wanted to participate he could. It's so hard to know what the best choice is. Last year {same kids party} my husband just distracted Atty, which was easier because he was littler. At yet another pinata party last year I just didn't call him over and there was so much going on he didn't seem to notice at first or care. I don't think he really understood. Plus there were toys in that pinata with the candy and he got some of those. This year everything seems a little harder in some ways. He's just so much more aware. I talked with him about the pinata. We went over what would happen and that he could choose to participate or not. That if he did participate he could collect the candy if he wanted to and then trade it with his auntie for special toys. He let it be know that he wanted to and that he understood. I also made him his freezer candies so that he would have his own treats as well. He was pretty excited about that. Pinata time rolled around and a pit grew in my stomach. Did I make the right choice? Would this blow up in my face, would he clutch the candy screaming and crying at the top of his lungs in front of everyone? I called him over like I said I would and he stood by my side, in the end he said he didn't want to swing at the pinata and clung to my side instead. When the pinata finally broke open, everything got pretty loud and scattered as kids scrambled for falling candy... and that is when Atty fell apart. A cry from deep down inside burst forth and he was lost. It was such a heart broken cry. He was completely overwhelmed. I quickly picked him up and walked away. We found a quiet corner to hid. I will admit I also became completely overwhelmed by his sadness and tears started streaming down my face, I had to swallow hard against the sobbing that threatened to escape. I feel so frustrated and helpless some times by all of this. Not that I really want any of my kids to have candy. I wasn't upset about the candy in particular, I don't feel like any of my kids really needs to eat candy. It was just that he couldn't do what everyone else was doing, it's not a choice, he simply can't. I just don't want one to feel left out while the other ones have fun. I also don't want to make all my kids feel like the odd ones out, sitting on the sidelines watching all the fun. I sat with Atty while we calmed down and then we talked about it a little. I think it just all hit him at once and became all too real for him before he had a chance to process it. One minute the kids were taking turns swinging and the next candy was everywhere and the kids were going crazy picking it up. Atty doesn't do well in commotion like that and then the added context of candy just threw it over the top. Anyways after we had calmed down and talked {I had hid my tears fairly well from Atty, didn't want to add to the situation or make him feel like I was feeling sorry of him. Feeling sorry for ourselves won't do us any good. It is what it is. Sad at times, but over all good. } I asked him if he was ready for his treats. That brightened him right up. We went and got them and then he lead me back to the quiet spot to eat them. I really liked that he knew he needed more quiet time and found it on his own. He sure is growing up. All and all I'm not sure that I would have done it any different. Except that in retrospect I probably shouldn't have talked about so many times with him before hand. I felt like I wanted him well prepared, but I think it just made it a bigger deal for him, and I know by now that that doesn't actually work well with him. It works really well for one of his brothers, but it doesn't seem to work for him. Makes it into too big of a deal or something. He is sometimes very hard to figure out. I think I'm going to have to claim the pinata back for kids who can't have candy and get one for his birthday next year... and fill it full of toys. I've also decided from now on that when ever I know there is a pinata at a party I will get little toys and trinkets for all my children and then after the party any candy they bring home I will trade them the candy for the "special prize of toys and trinkets". Because I can't really have the candy sitting around the house anyways and they can't eat it in front of Atty. Plus they really liked Atty's toys and I have a feeling all in all they feel like they are the ones that ended up on the short end of the stick. Candy... who cares. Toys last longer and are way more awesome. :)

Friday, July 8, 2011

Rambling... is there anything else I do?

Wow I am really not doing as well as I wanted to with keeping this blog updated. I wanted to record the whole experience of healing Atty better then this!


Atty is still doing so well. Although I think this second year into the diet might be harder in some ways. It's been a long time since he's had a seizure {well over a year is a long time for an kid} and so it's a lot farther from his mind. We talk about it from time to time and I made a video that we watch on occasion, but time still fades the memory. Which is good, and bad. In the first year he really listened and seemed to understand the absolute importance of following the diet exactly. Now he asks more for things he can't have or seconds on foods that he is limited on. I think also the fact that I am slowly switching over to a diet similar to the GAPS diet makes this an adjustment period for us. Because I am giving him unlimited non-starchy vegetables now and more of certain fruit {always paired with a fat}. I think the fact that I am making these changes makes him wonder what else can change. He hasn't thrown any fits yet when I tell him no on a food request, but he has sulked and or refused to eat the food he was offered in exchange.


I mentioned that I am switching him over to a diet similar to the GAPS diet. A while ago someone suggested that I read Gut and Psychology Syndrome by Dr. Natasha Campbell-McBride. I think I've mentioned this before. It took me a while to get the book as it's fairly pricey, but wow am I glad I did. Absolutely valuable. I've actually already loaned it out to quite a few more people who couldn't afford to buy it themselves, and every one who has read it has been blown away. I think it's a great read for anyone personally. Anyways I really feel that this is the diet that is the exact match for Atty. The MAS diet has done wonders, but it's focus is not on healing the gut and the health of the gut is directly related to Atty's health issues in my opinion {and the opinion of many others, including the doctor who wrote the book}. The GAPS diet has been used to heal others with seizure disorders but it's not as well know as the Ketogenic diet or the MAS diet. Which mean it's hardly talked about at all. I think this is a real shame. I'm not totally switching Atty over right away, it's going to be a slow transition. The GAPS diet is not a whole lot different then the MAS diet. I think the main difference for us is in the MAS diet you count carbs where as in the GAPS diet you focus on certain types of foods and food that heal the gut and build good bacteria in the intestines. They both exclude a lot of the same foods. There are some foods on the GAPS diet I wouldn't introduce yet {possibly in another year or two} that being the types of dairy products that are allowed like home made yogurt, certain beans and grain {a select few} and also honey. That's why I say a diet similar to the GAPS diet. Atty for at least the next year will still not have any dairy, no grain of any kind, no dried beans/peas, and no other sweeteners except stevia. The diet is a little to complicated I think to go into in great detail here, but it basically works in stages, you slowly introduce different foods as the gut begins to heal. Some times after the gut has healed up some people can tolerate food they were not able to tolerate before with out having any of the symptoms they were suffering from coming back. I'm not sure what all Atty will eventually be able to eat but I don't think he will ever be able to eat with out some restrictions.


This whole experience, while it has been eye opening and so exciting seeing him get better, it has also been very wearing on me. I have been fighting this drag me down feeling more and more lately. I just feel like being super lazy. Me saying something like that is like me sharing a deep dark secret. I'm embarrassed. Seriously. I am anything but lazy, in fact my husband wishes I would mellow out sometimes. I take multitasking to a whole new level. I can hardly sit still for a minute {unless I have a really good book, but even then I read in spurts interrupted by wild cleaning}. I generally can't even sit still for a movie. I won't sit still for a movie if the room is a mess or there is laundry to fold. So me feeling lazy, and I mean really really don't want to clean or cook another thing lazy, is odd. It's very out of character. It has me worried. I have to talk myself into picking up lately, into cooking and cleaning. I find myself fantasizing about curling up in bed for days. Or getting in my van and just driving, anywhere far away, alone. Of course I won't do any thing like that but the fact that I am even thinking like this is bothering me. Some times I wish I could just be a lazy mom and let my house go and just relax for a bit. But I can't and I won't and so that is that. I keep on going. That's what I do. But right now I just have to say... I don't want to.


Just admitting this on here makes me not want to post it, but I started this blog to be real about what was really going on with Atty and the whole situation and I'm a big part of it so I guess I have to be real about that too right? Sigh. Me and my ridiculous perfectionism that I can never live up to, will I ever let it go? Okay I'm done asking questions that you totally don't have to answer.

Now back to my super busy crazy life that I can not escape from {and don't actually want too}.

Wednesday, June 1, 2011

PARTY!!!

And they all said NO MORE SEIZURES! :) Had Atty's party this weekend and it was awesome. So nice to celebrate with friends and family this amazing milestone. One whole year down, and Saturday also happened to be his last day on medicine! The power of diet and diet alone!!!




Atty's face just glowed with happiness the whole time. It was hard to get any un-blurry pictures of him because he was all over the place visiting and celebrating. He loved sharing his food with everyone. I spent two days making different foods for sampling, all out of almond flour. On the menu was:


Almond flour bread and cashew butter sandwiches



Herb crackers {using herbs straight out of my garden!}



Sesame crackers



Pecan shortbread cookies



muffins



I also had to make him biscuits in the middle of baking, so that he would have something to eat before the party...




Also on the menu:



Chicken strips made with almond flour coating



His type of hot dogs, cut into strips and boiled so they curl {we call them worms, ha ha!}



Macadamia nut "humus" for dipping



Cashew/Tahini/Olive oil dipping sauce or salad dressing



Mustard for dipping



A non-starchy veggies tray



A fruit tray with his types of fruit {we did have to put this on a separate table to make sure he didn't eat more then he was suppose to.}



Baby spinach greens



Macadamia nuts



A big batch of camomile tea over ice sweetened with stevia



I also made his guacamole and his heart shaped freezer treats but I forgot to put those out. Oh well. Everyone enjoyed the food, which was nice. I'll admit my first attempts at his food weren't the best, so it was really nice seeing people actually enjoying eating his food and declaring it yummy. :) Atty loved that it was a party that he could actually go up to the table and eat what ever he wanted. What a relief.



After food and conversation we moved on to trophies. I had trophies made for each of the kids with a special engraving on each one. I wanted them all to understand that I noticed and appreciated their hard work. This diet had been hard work for everyone, it involves the whole family and I am just proud beyond words of my kids. I can't even think about it with out tearing up. In fact I was so emotional that I couldn't talk and had to have my dearest friend give out the trophies at first while I tried to compose myself. By the time it was Atty's turn I had a better handle on myself and was able to speak and give him his trophy. "For your bravery and dedication against all odds. " It was a really special moment.



We all clapped and cheered for each and every one of them. They all felt very proud of themselves, as they should.

Then my mom surprised my hubby and I with trophies as well. It was so sweet and thoughtful of her.

Go Team Rivers!


I got all emotional all over again, and made a super ugly cry face, trying to express to the people there how much their love and support has meant to me. I had tried to warn everyone ahead of time that there were going to be tears... I'm pretty sure just about everyone there shed a tear or two {or more} and we all hugged. It was food for my soul.



Showing off their trophies, or in Lala's case... eating it! Yummy. Her trophy was for brightening up the dark days and bringing a smile to her brothers face. She was sometimes the only one who could get him to smile in the hospital.



Atty's posing for his trophy picture.



Ira showing his hard earned trophy for his excellent team spirit.



The proud big brother showing his hard earned trophy as well, for being an outstanding team player. :)



All of their trophies said, Go Team Rivers! Which is something we say a lot because it helps the kids to work together. We even have an all hands in cheer we do, because were silly like that.





After the trophies we had almond flour cupcakes. There were twelve candles to celebrate the twelve months seizure free and we all shouted "No More Seizures" before blowing out the candles together. Half of the cupcakes I frosted with a cashew butter/coconut oil/stevia mix that is super yummy and the other half I frosted with Nutella {for the people with out allergies}. Let me just say that Nutella frosting is amazing. The cupcakes where strawberry flavored using his flavored powdered stevia drink mix and then I added a slice of strawberry on top. Not a single cupcake was wasted. Major success!



Atty enjoying his muffin. Quite a few of the people at the party are switching to diets similar {but not a strict or as high in fat} as Atty's diet and were really interested in all the food. They loved the almond flour baked goods and now want to order almond flour for themselves. They all felt it was much yummier then the gluten free alternative they use. Exciting to be part of a better health movement! The GAPS diet is what I want to switch Atty to and that is what most of the people there were interested in. I ordered the book 'Gut and Psychology Syndrome' by Dr. Natasha Campbell-McBride a while back and already have a waiting list of people who want to read it. I think it's an eye opening must read for everyone to understand the body better. Diet affects so many things that many of us have never even connected before.



Atticus, you are my Champion and I am so proud of you! One more year and you earned yourself a lizard! {Something I promised at the beginning of the diet...} It might end up being a bird instead though, as you are now really into birds, I guess we will just wait and see. Either way you are half way there!!!

Thursday, May 26, 2011

Atty's been seizure free for one year on the MAS diet!!!

I declare this day to be "National Blog About Atty And The MAS Diet" day! Spread the word!! I challenge you {all three of my followers} to blog about the MAS diet and challenge your readers to do the same. Share Atty's story with others! If you don't blog, share on facebook, or tell a friend {or stranger} and then leave me a comment letting me know. {Just for my own selfish wants, as it would mean the world to me.} Link back to this blog if you want to so that everyone can see for themselves what an awesome miracle this is! Lets get everyone talking!!!

P.S. I realize I am blogging this late in the day {I'm a busy mom of four and I run a daycare, so give me a break} feel free to spread the word tomorrow or the next day or the day after that... I'm not big on rules. ;)

Atticus I love you to the moon and back, quack, quack. Me and you son, we make a great team {along with your brothers and sister and daddy of course}.

Saturday, May 21, 2011

{Cream of Almond} Breakfast Cereal

Atty just ate two whole batches of this warm cereal this morning. He LOVES it! So excited to make a new recipe that he likes so that he can have something new to eat in the morning.



  • 1/2 cup almond meal/flour

  • 2 tablespoons flax meal (count the carbs)

  • 1/2 tsp sugar free vanilla extract

  • 15 drops stevia

  • 2 cups water

  • Add cinnamon to taste if desired

Combine all ingredients in pan and stir (I put 1 1/2 cups water in at first and then the other 1/2 after it has been simmering and thickened up a bit), cook over medium high heat until bubbling hard then turn down to a medium heat and simmer for 3-5 minutes. Don't let it get too thick, it will thicken as it cools! To me it seems to have the consistency and look of Cream of Wheat. I haven't really been counting the carbs in flax meal for Atty for quite a while now, it just doesn't seem to matter for him. But every child is different. Because I don't count the carbs in the cereal I usually top this with 1/3 of a sliced banana. He really likes that. I tasted it myself of course and it really is pretty yummy!

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!



http://abcnews.go.com/Health/Wellness/atkins-style-high-fat-diet-work-miracles-seizures/story?id=13359184&sms_ss=facebook&at_xt=4db196931585e7fb%2C0



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!!

Monday, March 21, 2011

Every mother has a little bit of warrior tucked deep inside...

Just finished Mother Warriors by Jenny McCarthy, amazing book, the last story about the little boy with seizures that ended up dying made be bawl! I don't understand why some people refuse to acknowledge that there are children being healed from Autism or seizure disorders through alternative means. {diet, supplements, biomedical interventions, etc...} There are many moms out there {me included} who have living proof... I had to fight every step of the way to heal my son, why is that? I had to suggest the diet to my doctors, plead my case, and watch him suffer through one medicine after another before we started on the diet. Why didn't they suggest the diet to me? It's a diet, it has a lot less side effects then the medicine, some of which have never been tested on children. It makes me angry. It makes me want to do something to get some change happening, get people talking.



What can I do?



I want to spread the word, help other mothers faced with the seemingly impossible. My son was diagnosis with intractable seizures. The out look was gloom at best. Brain surgery was being tossed out there into the open air, mentioned more and more. Brain surgery! My heart breaks for other mothers who didn't know that their child could be healed by a diet and went through brain surgery for their child. I am aware that it's not a one size fits all sort of a thing. I am always saying that nothing, absolutely nothing is one size fits all. I know that the diet hasn't worked for everyone who has tried it for one reason or another. But it has worked for many. And it could work for many more if more parents knew about it. If it was talked about in doctors offices. Not just because the parents brought it up but because the doctor is giving them another option to try. A way to heal. Seizure medicine stops seizures for some, but it's not healing. It's suppressing. It comes with a lot of side effects that the child {and family} then has to live with. I wanted to heal my son. Many, many moms want to heal their children. They just don't know how, or when they do come up with ideas they are shot down by the medical community and others. They second guess their intuition. It's an absolute shame. So many mother's voices going unheard. So many parents being turned away, shamed and humiliated for speaking the truth and wanting to heal their child. What is the big deal about thinking outside the box, taking the blinders off, and witnessing things you never thought possible?



Some times it just takes a voice or two to change a persons life. For me it was a women, a fellow mother herself and a stranger to me, mentioning the Ketogenic diet in an elevator at Children's hospital. And then my mother soon after mentioning it to me again over the phone when I was at the point of desperation. Those two women were the voice that caused the change for my son.
They could have held back worried about over stepping boundaries, saying too much or looking odd, but they didn't. Their voice planted the seed for me. I want to do that for someone else. I want to pay it forward. We need big change, and we need our voices heard.



The last chapter in her book is titled A Mother Warrior is... it is beautifully written heartfelt thoughts of encouragement for all mothers out there who feel unheard and often unsupported. I read it a few times over, and tucked it away in my heart. After reading it I now realize I share the title Mother Warrior with some amazing women!



MOTHER WARRIORS! Just saying that gives me the strength to keep going.

Monday, March 14, 2011

A first...

This past Sunday you went to Sunday school and stayed in the big kid room the whole time! This may not seem like a big deal to some but for you this was a major event. We've only tried this one other time since your seizures stopped and you only lasted about ten minutes. Because you also have sensory issues, little things can set you off (at least they seem little to others, and have been hard for me to understand at times). You generally have a really hard time with with transitions and commotion. When you were little we stopped going to church because you wouldn't stay in the baby or toddler rooms the numerous times we tried and you would absolutely melt down during the singing/music portion in church with us (Nor would you sit still for the sermon). It was a night mare. You have come so far and matured so much it shocks me some times. I think I had a harder time being separated from you then you did. Not that you would have know because I kept my game face on (as we call it in our home). I had a hard time focusing, I was so worried and was checking my phone for the expected text the whole time. I had a hard time keeping my mind from wandering into fear. At the very end of the sermon when the music starts they always bring the kids over to sit with their parents. I was worried that the music would set you off so I waited by the door to hold you, sure that I would have to. You walked through the doors with a big smile on your face and put your little hand in mind. You followed me to where daddy was sitting with sister and sat on my lap listening to the music, and even dancing! I'll admit tears were streaming down my face. I never thought I'd see the day. Loud music has always been a trigger for you. But not this time. I was totally overwhelmed. Since your seizures started we have never left you with any one but very close friends and family and always at our house. You have never spent that amount of time away from me in that sort of situation before. Of course you had your wonderful, protective heroes {brothers} with you. A team for ever, brother to the end. The fact that you guys are such a team is what helped in this situation because you hated having to stay home with daddy while your brothers when to Sunday school... we did this a few times in a row and then you were ready to try your hardest to stay in the big kid room, just so that you could be with your brothers. That was the key, the team building has paid off. :) I hope that you have now been able to see how fun it can be and how proud you made your parents. My fingers are crossed that next Sunday will go just as well.

It's hard letting go, it's hard trusting that everything will be okay even though I'm not there watching over every little thing. It's hard trusting the people caring for you will truly understand how important it is for you to stay on your diet. How you absolutely can not get your hands on any food not allowed on your diet. Seizure triggers. We have worked so hard with this diet and getting him seizure free that it would be heart breaking for him to have to suffer another seizure just because someone wasn't watching close enough. A big part of me doesn't like putting that burden on another person. I try to make it as simple as possible, bringing his own snacks, explaining his diet and the importance of it in simple and to the point form, giving everyone who watches him his seizure care plan from the hospital, and generally planning ahead for success. I am that mom with Atty, the seemingly over protective, pestering, have to do AB and C with my kid sort of mom. But I don't care and I won't make apologies. Although it does embarrass me some times I will admit. We normally don't like to cause a fuss as a family, we are quiet and try to be easy going. But it is what it is. It has almost been a year of you being seizure free, on the 26th of May was your first seizure free day last year. This is possible because of your diet. Your magic diet.

I am realizing that I am steadily changing my mind set. The fear is subsiding. We went to the park the other day and I didn't think about his seizures even once! I didn't realize this until I looked at the pictures I took of him climbing all over the place, up ladders, across bridges, down big tunnel slides. He was playing with a freedom he hasn't experience since his seizures started. I was not hovering, or telling him he couldn't climb that high or go on that certain toy. He wasn't wearing a helmet, or holding a hand. He was truly free to play at will with his brothers and it was a beautiful thing. I was also a beautiful thing that I did not worry and stress the whole time. I have slowly been letting go little by little and trusting in his magic diet and the fact that he has not had a single seizure in 10 months! Even with being weaned down to only one seizure medicine. {Hopefully we will soon be going down on that one as well...} From trying 6 different medicines and being on three at once at one time, to being on one medicine and a magic diet. It's been quite a ride!

Thursday, February 3, 2011

It's a Happy {Birthday} Day!

It's Atty's 4th birthday! I posted about it here. :)

Happy birthday love!!

More updates to come, and I might post a video of how far we have come after I am done working on it. In May he will be on the diet for a year and I am planning a big celebration, so the video is for that.

I have come up with a few more recipes as well that I want to post, in hopes that someone who needs them will stumble upon my blog. :) Today I will be making special birthday pancakes from almond flour, as well as a cake that he can have. Something I would not be able to do with out that blessed almond flour, and of course stevia to sweeten it up and make it yummy!

I think I will do a tips post as well about things we have done to make his diet successful.

I always mean to post more on this blog, keep it updated and record this journey better, but I get so busy and then it just doesn't happen. Got to work on that! That being said, I've got lots to do including celebrating my sons birth, his life and how far he has come!!! It's going to be a great day...

Wednesday, January 12, 2011

Holiday cookies!

Here are the holiday cookies I came up with for Atty. The first try was an absolute flop. I was going off of a recipe from the almond flour cookbook and just changed the sweetener from agave nectar (which he can't have) to stevia drops with 1/4 cup water. It did NOT work, they fell apart after cooked no matter what I did. So I grabbed my trusty Better Homes and Gardens cookbook and looked up sugar cookies. Then I used my imagination...and came up with these... Here's what I did.


Holiday cookies for cut outs

2/3 cup coconut oil

1 tsp baking powder

a dash of sea salt

1 egg

1 tsp sugar free vanilla

2 1/2 cups blanched almond flour

{about 50 drops of Stevia liquid}


Beat the coconut oil until creamy, add baking powder and a dash of sea salt, beat until combined. Then beat in the egg and vanilla. Add the almond flour and stevia and mix well. Form into 2 balls and then put in the fridge for a couple hours. Roll out the dough to 1/2 inch thickness {or more, you do not want to go thin on these!} between 2 sheets of parchment paper. If the dough is sticky dust with almond flour. Remove the top piece of parchment paper and cut out the cookies with a holiday cookie cutter. If needed dip the cutter in cold water after cutting each cookie to prevent sticking. Transfer the cookies to a cookie sheet lined with parchment paper, leaving space between cookies. Bake for about 8 minutes until lightly golden at 350. Let the cookies cool on the baking sheet for 1 hour before serving.


Frosting
Whip coconut oil until creamy and add a tiny dash of vanilla and if desired stevia for sweetening.


Sprinkles
Put cashew nuts in a food processor and process until finely ground. Then add food coloring and mix until well blended and desired color is achieved. Sprinkle onto holiday cookies after frosting.
Notes:
Use a really simple cut out that the cookies can easily pop out of.

They are still really delicate and crumbly so you have to handle with care.

Make sure you let them sit for 1 hour, do not try to hurry up the process.

Keep the dough as cold as possible during the rolling out part. Put back in the fridge when necessary.


I might try adding flax meal next time, it won't have the same great "sugar cookie" color with the flax in it, but I think they might hold together even better that way. If so I will up date on here. This is always such a work in progress as I learn more and more each day. I'm going to try Pecan Shortbread cookies next!