~seizure FREE me~

~seizure FREE me~

Wednesday, June 30, 2010

It's July and we are still in the clear!

Atty had a great past weekend and we tackled an all day outing and a fourth of July party. A little planning and prepping on my part goes a long way! I am discovering that I must always bring more then I would ever think he would eat. Just to be safe. There's usually always left overs but that's better then not enough and no way to get more... He got to enjoy a small slice of watermelon...he ate it all the way down to the green practically! He was so happy to get some watermelon it was really cute, he said "hummmmm watermelon" right before I took this picture. I told him he could only have one slice on his magic diet and to enjoy it because he couldn't have any more. It may sound mean but it prepares him so that there are no surprises and it is discussed ahead of time. He seems to understand this and even appreciate the clarity. He likes to talk about how good the limited food is when he's eating it and I make sure to really share in his enjoyment. He did ask for more and I reminded him again and offered him something he could have and he was okay with it. Which says a lot considering how much he loves watermelon.

He also loves the muffins I've been making for him with almond meal. REALLY loves them! As in I think he would eat a whole batch all at once if I let him. I brought six up to the picnic and he ate four, then ate the other two at dinner! They don't count as carbs, the way I make them for him on his diet, so that is awesome and makes for a great filler. I'm making a dozen every other day or so it seems.

It was so nice to see him running around and climbing on things. I can't help but still compare him to his lethargic little self of a couple month ago. I wonder when I will stop doing that? I did have one scare for myself when I realize I didn't bring his emergency medicine and we were way up in the mountains, no cell phone service (didn't know that ahead of time) or anything. My stomach started to hurt immediately and I almost started to really break down and cry feeling so very guilty for being so forgetful and unresponsible. It's just not on my mind as much now that he's not having any seizures. My husband and I have decided to keep one of his emergency meds locked up in the van to be safe. That's when we need to have it on us is when we are out and about so it makes sense, I don't know why we didn't think of that before.

It felt like a really big step to get right back into hiking and exploring in the great outdoors, way up on the mountain like we love. I don't want to live in fear. We didn't really go very far from the park, we stayed close to main trails and on this outing my mom came with as well as Jacob so there were lots of extra hands and eyes. A good way to ease right back into the way things were for the most part. We did bring a stroller for Atty because he get worn out really easily, doesn't have very good muscle tone, and he walks REALLY, REALLY, REALLY SLOW! As in I think snails crawl faster then he walks...ha, ha!

On the fourth of July this little cutie when to a party. I again brought lots of his food and I even made him some heart shaped 'candies' to eat with macadamia nut butter and butter and stevia and a little unsweetened chocolate. I put them in the freezer until set then packed them in the cooler, he loved them! They did count as a carb but the whole batch together only counted as one carb so he was able to eat them all if he wanted to. I only brought him two of his hot dogs and that almost ended as a disaster when he nearly lost his plate to the very dirty ground...but I swooped in and saved them at the last possible second...I might have nearly plowed a couple people to the ground in the process. ;) Next time I should probably bring extra to be safe. For the most part he hung around his cooler again wanting to eat but he eventually went to play for a while so that was nice.

This is the first year he actually enjoyed the fire works. He did need to be snuggled on my lap to enjoy them but it was so nice to hear him happily watching the fire works instead of clinging to me in fear and crying. I think the way the fireworks look like they are coming down at you always scared him, and then there is all the noise which tends to overwhelm him. I could tell the noise still bothered him this year as he started to get wound up and a bit frantic. That's why I had him on my lap to center him and calm him down. Right before the show really got started he was starting to short circuit (as I call it) and I told him he was going to have to take a break in the van if he couldn't listen to mommy. Wrong idea, because I couldn't actually take him to the van being as the show was about to start and hubby would need my help with the other kids. He look up and me and said "yeah mommy van, van mommy". Oops! So that's when I scooped him up and reassured him that he was going to enjoy the show...he asked about the van a few more times and felt pretty tense, but he relaxed soon after. When he first saw the fire works he called them pretty flowers...so cute.

All and all the party was a success!


I also made the magical S'mores for Atty a little while ago and he LOVED them!! As in Love, Loved them! It was a little tricky to figure out the exact amounts of each component to give him and he ended up not being able to have very much banana and of course he also had to skip the fruit/veggie in the meal we had for dinner to make up for it BUT it was well worth it to see how happy he was to get a treat with every one else. The rest of us had regular S'mores and he had his type and I just talked about it and kept in normal and not a big deal and he total didn't care. What a relief. He did notice when his brothers ate one marshmallow each at the very end. He was still eating his treat and the boys really wanted a marshmallow so I gave in and in retrospect it was pushing it. Atty asked about 'sticky?' a couple times and I could tell he was talking about what his brothers were eating but I just kept drawing his attention back to his treat and they finished theirs and we put everything away immediately. We had a really nice time around the fire in the back yard and got to enjoy a great treat too.


I spoke with his doctor and she agreed that Atty doesn't need to be on the third medicine! So we are slowly...very, very slowly...taking him off it. Yeah!!

He also has a doctors appointment with her in a couple weeks and we are working in getting him some different various assessments. Hopefully on the same day, as she said...because it's a long drive to Seattle from here. I also picked up paper work from our local school to get started on him getting some evaluations through the school system. That is where his doctor told me to start anyways, although I've been told nothing will even be started until August at the earliest. I need to tackle the paperwork still, I looked it over and am not looking forward to it.


I did a whole post about how frustrating the whole potty training with Atty is. Then I let it sit for about a week...then I deleted it. Lets just say it was getting Really Frustrating. But we seem to be making some progress so that's good. He does really well if he doesn't have any bottoms on, but as soon as he's dressed he has one accident after another. At home I'm fine with clothing optional if it means less accidents and more progress. It's when we have places to go that I am running into all sorts of frustration. Four kids out and about with one that will not stop peeing in his pants...brings me to tears.


Another frustration is the fact that I have to change his sheets almost every morning...and he wears a pull up to bed! He has to take his medicine before bed and he has to drink a full cup of water with his medicine so there in lies my problem. What to do, what to do? I've tried having him use the toilet again if he's still awake, before I go to bed. That sort of helps. I can't wake him up to use the potty, he just freaks out or doesn't wake up. He can be a super deep sleeper when he wants to...the rest of the time he's restless and fussy. Not sure what my solution is here because giving him his meds at a different time just isn't an option. I don't know how I will ever be able to get him out of pull ups at night if he has to guzzle a glass of water before bed! I guess I shouldn't even worry about that until we get the daytime pinned down...In the mean time I am drowning in sheets though! I already have more then enough laundry to do thank you very much.


I've started a list of questions and concerns for the doctor's appointment...it' a must! Nothing really major on there so far though, which is a good thing right. :) I wonder if the DNA testing will be done by the time we go in. The muscle biopsy came back negative for Mitochondrial but his doctor said that it doesn't mean he doesn't have it. That is the first test they do when they suspect Mito but it's not always accurate and since there are other factors that lead them to believe he has Mito they want to go on to the next step in testing. So his doctor sent his blood in for some sort of extensive testing. I really don't know a lot about it but I am sure she will explain further when we see each other. She's awesome that way! I continue to feel so thankful that she is our doctor.

Tuesday, June 22, 2010

...one time, one time, one time...

Atty has not had a seizure since May 26th! He's been on the Modified Atkins for seizures since April 28th and in those first days he was having so many seizures I would loss track, upwards of 50-60 a day, all different types. Now...none. I am still so utterly amazed!!!


I'm going to talk to his doctors about getting him off of the 3rd (most recently added) medicine. Then he would be on only two. I really don't feel like the third is doing any good at all. The Lamictal will finally be at the targeted therapeutic dose by this weekend. The valproic acid is suppose to work well with the Lamictal so those are the two we will stick with for now, but the third is Zonisamide and I really don't feel like he should be on it any more. It's the one that has giving him severe insomnia at higher doses. I think at this point it will just do more harm then good to keep him on it.


He's still not sleeping well at night. This is actually pretty normal though because even before the seizures he had a hard time at night. It's always been a frustration, well at least it is if you want a good nights sleep, ha, ha. He just seems to get restless and maybe he's having bad dreams, I really don't know. Some times he seems like he's in pain. He just starts fussing and crying, and it's hard to comfort him because he's usually so out of it. I'm still sleeping in his room right now and if I tell him I will be going out so that I can sleep or that he's waking up the baby, he will usually make an effort to stop but then he starts right back up again a while later. I took him in for a sleep study and everything, before the seizures even started but we've never been able to get any answers as to why. I don't do well being woken up over and over again and since he's often not the only one of our little children that needs me in the middle of the night I have not had a good nights sleep in WAY TOO LONG (we're talking years people)!! I was giving him a natural remedy to help him with his restlessness which help for at least the first part of the night, but he can't take it now. I want to ask the doctors for help but I don't want him to just be prescribed a sleeping medicine on top of all the medicines he's already taking. I think I will just bring it up and see what ideas they have to offer, if any.


He is getting really repetitive with his speech again. He already had a tendency to do this before but this is to the extreme. It started out with "mom, mom, mom" (and repeat) when he first started talking again. Now just about anything he's talking about he will say the same word or phrase over and over again. Even when you answer him right away. I started telling him, "One Time" and so now he will be getting repetitive and I will start to say "Atty..." and he will interrupt me and say "one time, one time, one time..." Ugggggg! Kind of funny though in a 'your going to drive me crazy' sort of a way.


I need to figure out getting him into a speech therapist. Not sure where I will squeeze that into our already hectic lives but I think it would be good for him to at least be evaluated because I feel like he has a hard time pronouncing things. He's also still drooling, not sure who to talk to about that. I was told that I would be having a follow up visit at the end of this month but the end is coming up and no one has called to schedule one so I guess I will have to make some more calls today to figure that out. I want to get him evaluated to see how far behind he is developmentally too, I can tell that he is, I'm just not sure how worried I should be or what we should be doing about it. I've been putting this all off because it was so hectic there for a while and it's felt so nice with everything calmed down a bit. But I need to jump right back in and start scheduling some more appointments so I can stay ahead of the game and give him the best start possible. I'm not sure if I've ever mentioned this before but his birth mother tests at a third grade level and has a lot of mental health issues so I worry... A Lot. I was told when we adopted that there was at least a 50% chance that he would also have mental health issues (if not more because both birth parents have mental health issues) and they were not sure developmentally where he would stand. He came with a long, long, long list of possible complications and what ifs. We had to read them all over in front of the case worker so that she could be sure we understood all that we could be facing. I feel strongly that being proactive and observant and getting him the right treatments is going to make a huge difference in his life no matter what he is faced with. I know for a fact his birth mother didn't have that. She had a really neglectful childhood from what I've heard. She didn't have someone standing in her corner ready to fight for her...which is sad...I've often wondered if she would have been a completely different person if she had just had some one to love her better and care for her more. I know that some things are unavoidable, genetic and what not, but I feel strongly that what you surround a child with, the tools that you provide for them to navigate their way through life, the guidance you give from the very beginning, those things can make a huge difference. Huge. That and prayer. Lots and lots of prayer. Praying together with your children. Praying alone for your children.


So far this diet has not really been much of a struggle. Not a lot to report. I think because he already had diet restrictions before we started this diet he was already use to only being able to eat certain food. He did start sneaking into food though right before his seizures started so I'm worried about him trying to start that again. He was actually getting up at night after we went to bed and I would catch him in the kitchen or trying to get into the kitchen. We were having to try all sorts of thing to keep him out of the food. The main frustration I've run into so far is that he is starting to say he is hungry All The Time. It can get really annoying. Usually I can offer him some of his Stevita juice and that will calm him down for a while. He does love the special muffins and they don't count as carbs the way that I am making them so those help. I find myself making a batch every other day right now. I decided to try and make cookies with the same recipe and it worked! They are delicate and so I have to be careful in how they are stored (so that they don't fall apart) but now if I get the urge to make a batch of cookies Atty can have some of his kind too and won't feel left out. I put the rest of the batch in the freezer last night so I guess we will see if that works or not. I hope so because then I will be able to save them for longer and just pull out as many as I need at the time. Same with his muffins I want to see if I can keep those in the freezer too then I could make a huge batch on the weekend and store it in the freezer for later use. I think the only time this diet is going to be a stress is during holidays, because they all center around food (and treats!) and there are going to be things like candy that I can't duplicate. I've read about how you can give them money to buy something special instead or get them toys but for Atty I don't know that he would really care about that. He can get pretty fixated on food and wanting what everyone else has, especially if it's treats like candy. We don't eat candy around her very often, mostly just around holidays really, so it's not much of an issue on an day to day basis. I'm just going to have to have some sort of a game plan before a holiday rolls around. Camping is the only other scenario that I can think of that might present a problem. In the past we've always made S'mores for a special treat or at least roasted marshmallows. I'm in the process of coming up with a fake S'mores idea that I think will work. I know he likes the fake graham cracker I've made and I've come up with a chocolate idea using macadamia nut butter, unsweetened chocolate and stevia. Then for the "marshmallow" I'm going to use banana chunks that he will roast over the fire with us on a stick so he can feel like he's part of the whole thing too. Put it all together and it will be almost the same colors and look of a S'more and that's all that matters really to him. Plus it will be yummy, bonus...ha, ha! Having a good game plan is definitely what prevents melt downs (with all children) so I may seem a little obsessive with this but I've got to stay ahead of the curve and use my creativity to the max to make things run as smoothly as possible.


Okay I'm done rambling for now...

Tuesday, June 15, 2010

Our first successful outing!

I survived my first party out with Atty...and so did he! There was food Every Where!! Food that he couldn't have. Food that his brothers could have. Food that everyone else was eating. You don't really notice those sorts of things until you have a kid that can't have that food. I packed a lot of food for him and it was a good thing I did because he was fixated on food. His brothers ate a little and then went to play, Atty on the other hand kept saying he was hungry and wanting to eat. He almost lost it a couple times when I had to start telling him no and that he had to go play. It was getting ridiculous though how he just wanted to sit next to his cooler and eat and eat and eat! I'm glad I brought his Stevita drink mix because that helped smooth over a few situations and there was plenty of water available to mix it with. So this is what I did that worked. I brought a little cooler and packed it with:

  • His special muffins I made that morning, I decided to put some of his strawberry Stevita powdered drink in his magic muffin mix instead of plain stevia and I'm glad I did. It made them even more delicious! I made sure he was really excited about it so that he was looking forward to his special treat. I brought 4 even though we were only going to be at the party for about three hours. Good thing I did because he blew through every one of them! I saved one for the last in case there were any treats and it's a good thing I did because there was some cake that ended up getting passed out. He didn't even care about it because he had his muffin.

  • I packed 2 cooked hot dogs with a cold pack and he ate those while his brothers ate there food from the BBQ. He can't have the regular hot dogs because of the fillers, and he doesn't like hamburger patty's plus people often put marinate on the patty's that he wouldn't be able to have.

  • I made him his flax seed meal crackers, for a filler just in case...he ate them too.

  • I packed nuts to snack on.

  • I packed his Stevita powdered drink mix, so glad I remembered that because he definitely noticed when his brothers got juice.

  • I packed him an avocado and he ate the whole thing.

  • I packed 1/3 of a banana (5 grams of carbs), I also went ahead and let him eat 1/3 of a piece of watermelon (another 5 grams of carbs) and I just left the carb out of his dinner that night. He really likes watermelon and so do his brothers so they were eating a lot of it and I didn't want Atty to feel totally left out.

I did get a few funny looks when I talked to Atty about his special magic diet, as we are calling it, but that's okay. I made sure to be proactive and voice out loud a lot about the fact that he was on a special diet and couldn't have any food except the food that I brought him. I felt a little pushy and over bearing but I know it's so important that there aren't any mistakes so I just tried to be as friendly about it as possible. And I hovered, I'll admit it. Maybe at some point I will trust that he won't get his hands on non-diet food, but for now I am on super high alert. That being said he has still almost got his hand on a few things not on his diet while we were at home. Just the other day he snuck and eat some raw carrot left over from one of his brothers lunch. I then had to skip his carb for dinner because I didn't know how much extra carb he had consumed. Which is why when we were at the party I felt like I had to be extremely cautious with him. It would be too easy to loss track of the seriousness of the issue in the middle of all the chaos, it's easy enough to do that at home. It's hard because people who don't know him would not be able to tell that he has a serious health issue and wouldn't know to stop him if he grabbed some food, or they wouldn't know not to offer him something. One seemingly harmless slip up could cause him to have seizures. Just one slip up. I'm tossing around the idea of making some sort of cute tag to pin on his back at parties that lets people know he can't eat any of the party food, but I'm not sure yet how I feel about doing that to him. I'm going to get him a medical alert bracelet, but there's not a lot of room on those for the details and they are not always all that noticeable. He is starting to learn at home to bring me any food he finds and he's been being pretty good about it (except for the carrot thing). I'm repetitively using the term magic diet and talking about Atty's food and other people's food and he seems to be picking up on the difference. I am hoping that at some point he will be able to speak up for himself and tell others if they are giving him something he can't have. Maybe I'll be able to relax a bit then. Then again maybe not... Hopefully he will understand better at some point the importance of this diet. I worry though because he has to be on it for at least two years and if he stays seizure free he won't remember the seizures he had at three when he's four or five. The importance of the diet might be lost on him. I've really got to stop worrying about things like that though and instead focus on the here and now. The here and now seems a little less intimidating now that I have survived my first party with Atty! I think the only thing I will change for future outings is that I will wait to give him the carb I bring just in case there is a carb that he wants at the party (like he did with the watermelon) I also need to get a big measuring cup I can bring with me so I can measure out the right amount depending on what it is that he wants. I will copy the page that has those measurements on it and bring it with in the cooler. I will also remember that I do have a little wiggle room in the sense that I can leave out a carb in a regular meal if needed. Like I did when he wanted the watermelon. I started to stress out about it and I did say no at first but then I realized there was no need to make it a sad thing when I could just not give him a carb later to make up for it. That sort of thing is okay every once and a while. As long as he gets no more then his 15 grams total for the day he doesn't necessarily need them split up into his main meals.

Another day down...another hurdle crossed and we continue on this journey.

Thursday, June 10, 2010

I made a winner!

I've now made the BEST fake muffin, cake, cornbread concoction EVER! I say fake because I use NO flour or sugar in it. If I need muffins I put it in muffin tins...Actual muffins tins not the paper kind, so that they don't stick. If I need cake I use these adorable little round baking bowls, and if I need cornbread I stick it in a little square dish. It's the look that counts. He loves it!! Here's the recipe. I know most of you have no need for it but just in case there is some one out there trying desperately like I was to make some sort of baked good for a child on the modified atkins for seizures diet, that they would actually eat...here it is. Yummy!

muffin recipe updated on 10/26

{Makes 12 muffins}

4 eggs separated.

1 and 1/2 cups almond flour

6 tbsp oil, I use grape seed.

1 and 1/2 teaspoons sugar free vanilla (more or less to preference)

1/2 cup water

1/2 teaspoon baking powder

For the muffins or cake add 30 drops of liquid stevia or 1 1/2 tsp flavored stevia powder like Stevita Breeze. It's actually a powdered drink mix, but it works really well for strawberry (or any flavor your kid likes) muffins. Best part...adds flavor with out carbs!!! For the cornbread add 15-20 drops liquid stevia and 1/2 teaspoon sea salt.

Mix all ingredients except the egg whites together. Whip up the eggs whites until fairly stiff and then fold into the mix really well. Oil each muffin tin well (the more oil the better) and pour batter in until full. Cook in a preheated oven at 350 for about 20 minutes until light golden brown.

If putting into a pan add oil to the pan first so it doesn't stick and it adds fat to the recipe which is a plus on this diet. Melted butter works well for the cornbread, melt it in the pan then add the mix, super yummy! I've been baking it in a oven at 350 until light brown and a toothpick comes out clean. There is no set time since the pans vary depending on what I need. You don't want to over cook these though so keep a good eye on them.

Fruit can be added but then I have to count it as a carb on Atty's diet and it gets a little tricky. The first time I used banana in the recipe for a cake on Spike's birthday. (1/3 of a banana mashed and added to the mix was equal to 5 grams carbs) He can only have 15 grams of carbs per day in the form of fruits and vegetables and he had already had 10 grams that day. I then had to leave out the vegetable in his dinner to make up for the 5 grams of carb in his cake and I didn't really like that very much. So I decided to make it with out fruit and changed the recipe a little and came up with the recipe above. From now on unless it's a special occasion I'm just going to leave the fruit out so that I don't have to reduce the amount of fresh fruit/vegetables for the day. I like that with out fruit it doesn't count as a carb on his diet and I can add it to any meal or give as a snack or treat. I guess you could always put less stevia in it, but he likes it the way it is and since he can't really have any treats or sweets right now I'm leaving it as is.

So anyways there you go...best fake muffin, cake, cornbread ever...BEST. Just ask Atty he's already ate three muffins this morning. It feels great to be able to bake something for him again and it makes it so that I can bake yummy treats for my other kids now and I don't have to feel bad about it. It's a win/win...which is the best way to play if you ask me. :)

Oh and I think I forgot to mention that we were able to switch Atty to a dairy free version of the diet, except he still has some butter. The butter doesn't really seem to bother him though, at least as far as I can tell. He's still loving the avocado...what a blessing that has been!

Wednesday, June 2, 2010

Treats and tidbits

And the fun begins.

Reality is setting in.

Now that Atty is not having seizures (thank God!) my other boys are having a harder time understanding the need for the diet. Yesterday at dinner time I made Atty his plate and Banden thought what he was eating looked better then the dinner for the rest of us. Before when I would run into this I would just remind him that Atty is on a magic diet for his seizures and he would be understanding. Last night he questioned my response, because Atty's not having anymore seizures. I launched into a whole explanation about how he's not having any because of the magic diet, that he has to stay on it for a long time and if he doesn't his seizures could come back. We talked about how Atty can't eat a lot of the food that Bubu and Spike can eat. That he can only eat magic diet food. I let them know that some times it might be hard for Bubu or Spike to see Atty eating a food that they would like but that it's also hard for Atty to see other people eating food that he would like that he can't have because of his magic diet. I told them I would try my hardest to keep things fair but sometimes it might not seem fair to everyone. I think the talking about it helped but I can see issues arising from this now. It will be harder to remember the reason for the diet now that everything has settled down. Even for myself. I need to remember to stay vigilant and strict on the diet for him. He almost got his hands on some bread yesterday and that could have sent him back into seizures. He also tried to get some of the baby's food which could also be a set back, so I really have to keep a super close eye on him. He's back to his mobile, busy, getting into everything self and it's a full time job keeping up with him. He doesn't fully understand the diet either so even though we talk about it a lot he's not really grasping it I can tell. He has to be on this diet for at least 2 years so I hope that talking regularly about it will help it to become second nature. Tomorrow is Spike's third birthday and a whole new diet challenge. I have to figure out a way to make some sort of special treat for Atty so that he won't feel left out when we have cake. Being as I have a really limited amount of options I'm a little worried about it. I am going to experiment tonight and see if I can come up with something. I hope it works so that we can all have fun together celebrating Spikes birthday. I don't want a big upset about food while we are trying to celebrate, I don't want Spike to feel like the attention is all on Atty (because I don't want him to feel jealous) but I also don't want Atty to feel sad about not getting a treat. There are going to be many more situations like this so I need to figure out a game plan and a treat that he likes that I can use only on special occasions so that it stays something that he looks forward to.

He is also starting to say he's hungry all the time and that is a hard one to know what to do with. I can give him some fat or protein for snack, but we eat three meals and two snacks around here and I don't want the other kids to think it an open buffet...cause they'd run me out of business!