~seizure FREE me~

~seizure FREE me~

Wednesday, December 15, 2010

Quick update

Went to another doctor appointment because Atty had been complaining that his feet hurt and was walking funny but we couldn't figure out why. Well by the time we got into Children's hospital to see his doctor, weeks later, he wasn't doing it anymore. So we figured nothing out, except that it might be because we recently went up on his Lcarnitin because of high anmonia levels. There is a type of nerve pain that can be helped by Lcarnitin and so it is interesting that he stopped complaining about his feet around the same time that we went up on that medicine. Hummmmm....I guess now we will wait and see if he mentions it or starts walking funny again.

Another random note, I messed up during the holidays. The weekend before Christmas we went to my mom's house for a get together and I realized {to late} that I had left ALL of Atty's food on the table by the door at our house. My stomach just sank. I left all his meds too, which wasn't too big of a deal because he didn't need them as we weren't staying over or anything but I do like to have his emergency meds just in case. Even though we've never had to use them, and Lord willing, never will. Anyways he got pretty sad, and then started freaking out because I'd made a big deal about the special cookies I was making just for him and then had none to give him. I wanted to cry. But I stood my ground on the no throwing fits over food thing and sent him into the other room until he was done. He settled down soon and then we had a talk and I told him how very sorry I was and how sad it made me feel that I messed up and that he could have what ever special food he wanted as soon as we got home. There was a guest at my mom's who didn't really understand the big deal and it was super hard not to respond to that in a rude way. We found a few random things to offer him, but he didn't eat much. He did well the rest of time though and when we got home I was good to my word even though it was super late I let him stay up and eat some cookies and some of his peanut butter.
That whole weekend was busy but went smoothly and no more food was forgotten, thank goodness!

Thursday, November 11, 2010

Almond flour bread recipe!!!

Bread recipe! Just in case someone stumbles across my blog and happens to be on the Modified Atkins for Seizures diet {or has a kid on it, or knows someone on it...} I've got an awesome recipe for you! I adapted a recipe from "the gluten-free almond flour cookbook" by Elana Amsterdam. It's a really great book for ideas, but the recipes have to be changed to make them work on Atty's MAS diet.

Here is the MAS recipe:

3/4 cup creamy roasted almond butter at room temperature
4 large eggs
2 tablespoons flax meal with 2 tablespoons water, let it sit for a couple minutes to thicken.

1/2 cup blanched almond flour
1/2 teaspoon sea salt
1/2 teaspoon baking soda
1 tablespoon ground flax meal

Preheat the oven to 350. Grease a 7 by 3 inch loaf pan with grape seed oil and dust with almond flour.

In a large bowl mix the almond butter with a handheld mixer until smooth and then blend in the eggs and {2 tablespoons}flax seed mixture. In a medium bowl combine the almond flour, salt, baking soda and remaining 1 tablespoon of flax meal. Blend the almond flour mixture into the wet ingredients until thoroughly combined. Pour into loaf pan. Bake for 40 to 45 minutes on the BOTTOM rack of the oven until a knife inserted into the center of the loaf comes out clean. Let the bread cool in the pan for 1 HOUR, then serve.

Each loaf contains 6 grams of carbs {every 2 tablespoons of flax meal is 4 grams of carbs). Slice the loaf into 12 even slices so that each slice is .5 grams of carbs or round up to 1 gram of carb per slice if you are more comfortable with that. Remember to always ask your dietitian about every new recipe before trying it. :) To store wrap the bread slices in a paper towel, place then in a resealable container and refrigerate. Stored this way it will keep for up to six days.

With this recipe for bread you can now enjoy things like tuna fish sandwiches, french toast or just toast with cashew butter {Atty's favorite}.


Monday, November 1, 2010

Harvest party, fun for all!

We had an AWESOME Harvest party!Besides the fact that I almost had a complete melt down at the grocery store the morning of the party...Atty's almond flour didn't make it on time so I had to get that, among other things, at the store. The store I always shop at, the store that always has almond flour...except for when I {desperately can not live with out it, child with be crushed, and party ruined} need it. There is nothing else I can make his baked goodies with and he can't have any other goodies...I was FREAKING out. As in I started to lose it in the store, had to talk myself out of sobbing right there in the aisle. I know it sounds dramatic, but it's not like I can say "oh well, didn't have the ingredients to make his cookies, guess I'll just buy some". Last time I checked they don't make almond flour anything anywhere around here. I had no idea where else to get it from. Anyways to make a long story {read emotional meltdown} short I finished my shopping then sobbed my way to another store where thankfully...they had Almond flour. Relief. Of course one pound was 15 bucks!! ack!!! Oh well, that's what I get for poor planning. I then rushed home and whipped up a batch of muffins and a batch of cookies. First time trying this cookie recipe {that I'm adapting from a different recipe} and it actually turned out pretty good. I'm going to try it again with the good almond flour that finally showed up on my door step today.

Then four o'clock rolled around and the party was on a roll!

It was a dress up party to keep it fun and Halloweenie, and wow were these kids cute! Thanks to some really great friends who elected to skip trick-or-treating to hang out with us and have some fun...and we had all kinds of fun! They started out being wild and crazy like little kids are and so we sent them outside to get some wiggles out, then they came in and watched The Great Pumpkin, a classic. After the movie we moved on to games.

A favorite game of ours for this holiday is the mummy game. It involves toilet paper and lots of giggles. Everyone took turns getting mummified. I think this is one of the cutest mummies ever!

My dear friend brought over a board game, Harvest time, and the kids really enjoyed playing that with her. It was hard to drag them away for dinner time! Not that they were all that hungry after all the good snacks we had set out. So far I've not had any problem with food that is set out for others to eat, he stays away from it and/or asks me if he wants anything. Plus his brothers sound the alarm if he is even standing to close to food he can't have. It has the potential to be adorable and annoying at the same time. I did end up keeping the food separated, Atty had his own special food and the rest of the guest had what we were serving. I was thinking about serving food that Atty could have too, like the home made chicken fingers with almond flour breading but since I didn't have hardly any almond flour to begin with I changed my mind. It would have been a lot of extra work anyways. I knew that none of the foods were going to bother him and made sure I had his favorites available. Thankfully he's not had a problem with this so far. He's really into cashew butter right now and likes eating it by the spoonful...so I let him eat spoonfuls of cashew butter to his hearts content. :) He didn't even bat an eye at what everyone else was eating.

After dinner it was time for our treasure hunt. My lovely sister made up all ten clues and hid them around the house. Then we turned off the lights and searched for the clues by flash light, fantastic! At the end of it all the kids each got a little gift bag full of toys and trinkets.

Then we read a spooky story by flashlight, "What Was I Afraid Of?" by Dr. Seuss. Followed up with pumpkin cookies for the kids with ice cream and whipped cream and special cookies for Atty with butter frosting. Yummy! The night ended up being a huge success thanks to my good friends and some really great kids. Not a single piece of candy was involved. We even passed out trinket to the trick-or-treaters that showed up at our house. We will definitely have to do this again next year, I enjoyed it so much {and the kids really seemed to also} that I think I might be done with trick-or-treating from here on out. Never liked it all that much anyway.

Wednesday, October 27, 2010

A half a year of freedom!

Atty's been seizure free since May 26th...That's 6 months! Amazing! I can tell you one thing, on May 26th 2011 we are going to party!!! Here's to another six month of being seizure free!

On another note, Halloween is right around the corner...a candy nightmare...a {Modified Atkins for Seizures} kid's worst nightmare. I've got a plan in place, for the most part. It includes us staying in and hosting an awesome Harvest party. Wish me luck! :) I hope to have lots of good ideas and tips to write about soon enough.

I also came up with a great pancake recipe that Atty loves, plus fish sticks {that everyone but Atty loves} and chicken fingers {another favorite of everyone but Atty so far} using Almond flour. Atty's still pretty stuck on hot dogs, turkey sausage and cashew butter. I'm think he will warm up to them eventually though. Next I'm tackling bread by modifying a recipe using almond flour to suit his diet. I hope it works... Oh and crackers, there's a recipe for crackers that I hope will work with a few little changes.

Thursday, October 14, 2010

The reality

I'm feeling a little overwhelmed with the medicine changes. They are good don't get me wrong...but keeping track of all the changes and remembering his medicine, twice a day, every day is starting to prove to be frustrating to say the least. I was suppose to go up on one of his meds last week, in order to start going down on another and I forgot. So that throws the whole schedule off and just makes it last longer. I have it all written done in his calendar and everything it's just a matter of slowing down and remembering to check that calendar. I was doing really well when all this started, but life takes over and I start slipping up on the regular stuff. I've never been good at remembering these sorts of things, I can't even remember to take a multi vitamin on a regular basis. So the medicine thing freaks me out, because it's like a thousand times more important then a multi vitamin! {I can't seem to remember to give him his multi vit. on a regular basis either, ack!} Also to make matter worse, at some point last week a dose was missed. I don't remember doing it and neither does my husband, but it appeared that I hadn't given him his medicine in the morning when my husband went to give it to him at night. I was out with a friend {Something I've been trying to do once a week, need some me time.} and he called her cell to ask me about it. My friend insisted she heard me talking about giving him his medicine that morning when we were on the phone, but it must have been the morning before. I couldn't enjoy the rest of my time out, I was quite literally sick to my stomach with fear and guilt. I cut the outing short and came home and worried the whole rest of the night and into the next day. Worried and waited to see if he would have any break through seizures...he didn't thank goodness! But every little twitch, stumble or weird look got my heart racing. I gave him extra oil, and focused on his diet making sure everything was extremely well balanced. I'm always careful with his diet, but not normally obsessive any more. I was obsessive for days, and stressed out, but slowly I've relaxed again. Not on the medicine, just in general. I really hope he doesn't have to take medicine the rest of his life. It's so stressful. Break through seizures are scary enough, but if he were to abruptly stop his meds he could go into status epilepticus, and that word makes me break out in sweats. It would make it all the harder to let go when it comes time for him to live on his own. But I'm not going to think about that right now...

I still feel so guilty about missing a dose. So irresponsible. I'm always multi tasking to the extreme and it's times like this that I realize that's not always a good thing. It makes me so distracted. It seems I'm always trying to prove how efficient I can be, I've got it, I'm on top of it, I rule. But then I don't. That hurts. It hurts me, and as in this case, it can hurt others. I'm not sure what to do about it though. There is just always so much to do, and it's just regular everyday stuff for the most part. When you have four kids, and run a daycare and take care of most of the household responsibilities and errand running it just adds up. {My husband works a lot, he's not lazy just rarely here.} Not enough hours in the day. So I rush around, doing to many things at once, and all the while thinking about what I need to do next. It's inevitable that I will forget things at times. Which I do, and it always seems to be the really important stuff. Like a credit card bill that was due yesterday, or an appointment that had been scheduled a month in advance, or medicine. Why can't it just be something like the dust bunnies in the corner?

Friday, October 8, 2010

A glimpse

This is a video of Atty before his magic diet...during his various medications...struggling for normality. Sorry it's sort of a long video, I was trying to get one of the drop attacks on that day. They had just started and they were terrifying and I wanted his doctors to clearly see what was going on. This by far was a mild day, I don't have a lot of video of the harder days. Those days are a blur. Doctors appointments are so short that I think it's a good idea to tape your concerns if you can. It was a valuable thing for me because he had so many different kinds of seizures at that time. I could talk about them but unless he had one in the office they didn't really know clearly what I was talking about. Atty had a great doctor who was willing to sit and watch videos in order to truly understand what was going on. When I watch this video, and the others that I have, it chokes me up. I have to fight the tears that threaten to spill. To see him fighting so hard. How brave. In almost every video he smiles at me no matter how bad it is.

I am so thankful for how far he has come and he continues to make grand advances as the days march on. With out his Modified Atkins for seizures diet I feel certain I would still be looking at the same little boy in this video. Or worse. The effects of that would have been devastating to him and our family. Four months of none stop seizures was more then enough...It sounds like a short period of time now, but it felt never ending then.

Sunday, September 19, 2010

Drum roll please

...and now, one down...two to go.

Last day for the zonisamide, No More from here on out!!! He did not have a single reaction...no noticeable change for the worse what so ever...how awesome is that! I just knew that one was pointless. Now we are going to wait about a month and then start going down on the VPA. I'm a little more nervous about this one, but of the last two meds I want him off this one as soon as possible. Lots of nasty side effects with this one and it's making his hair fall out and loose it's beautiful dark red color. So sad. The doctor said that it isn't permanent though, that his hair will grow back again as soon as he gets off the VPA, she doesn't know about the color though. She's never heard of the hair getting lighter, but it's obvious that it has when you look at old pictures and then now. I was even finding white looking hair on his head before we shaved it. We shaved it because he was starting to look like he had a comb over, poor boy. I miss all his beautiful red hair. :(

I ordered The Gluten-Free Almond Flour Cookbook by Elana Amsterdam and I am waiting patiently for it to arrive. Super excited to see what recipes I can adapt from there to make new things for Atty using the almond flour. I tasted a cake that someone made from this cookbook and it was super delicious, if they hadn't used maple syrup for sweetener Atty would have been able to eat it {minus the frosting}! I'm pretty sure I will be able to just use stevia for a sweetener and hopefully have success with many of the recipes. I also found Almond flour online and although it is a big investment {pricey stuff} in the long run it saves money {price per pound goes down} so I contemplating ordering larger quantities. I go through the little bags from the store so fast!

We've decided not to go Trick or Treating this year. I know it's a little early to talk about this, but it is just around the corner already! I don't really like the whole thing anyways and the kids have only gone two or three times, so they are not really to upset about not going. Bubu {my oldest} questioned the idea a little bit, but I reassured him that we would have fun and talked to him a little bit about why it would be hard for Atty and he accepted that. We are going to have a Harvest Party instead. Some close friends are coming over and we've got all sorts of things brewing, idea wise. I've got to come up with some great games and snacks and treats that the whole group will love. I've got to decided if I will make separate things for the rest of the kids to enjoy and then special things for Atty or all the same stuff. It's really hard to make all the same stuff though...Food that Atty can have doesn't always mix well into the over all party food. If I make separate stuff I have to be careful so that Atty won't feel left out. I usually try to make something for Atty that looks close to what the other people are eating so it takes a lot of planning ahead of time. Maybe I should come up with a regular menu and then branch off from there. Apparently I'm brainstorming as I type. We are keeping it a dress up party so that all the kids can wear their costumes {gotta have my pictures!} and I think the kids will have fun passing treats out this year. I've always been the house that passes out items like stickers/crayons/bubbles instead of candy {Yes I am that house} so there won't be any stress for us there. Just having candy in the same room as Atty makes me break out in a cold sweat. It's just too tempting...

Atty has a big multiple appointments at Children's day coming up on the 28th. Hope all goes well. I think we have to do a blood draw again, dreading that. Also have to take at least the baby girl with me if not all of the kids so that will be fun {heavy on the sarcasm}. It sure is nice to walk through the doors with my little red head walking beside me, no helmet, no stroller, not stopping to wipe drool, no grabbing him by the shoulders to steady him...just walking, hand in hand. :)

Thursday, August 26, 2010

He amazes me

We made it through two more birthdays, easy breezy! His brothers and I make a great team. I love how his brothers are so willing to help with Atty's diet. When ever it has been time to sit down and eat at the parties he has a brother on each side to make sure he doesn't grab any other food or get food handed to him from someone else. His brothers tell other people about Atty's magic diet and are always asking me if certain foods are okay or not for him to eat. I talked to a lady at the last party that makes cakes and treats with almond flour and I'm going to get in contact with her to see if I can get some more ideas for Atty. We have another birthday party this coming weekend and this one has a pinata again, so I've got a bucket of little toys ready to take with. Last time he didn't notice the pinata but I'm afraid I can't count on that again. Atty is a weird combination of oblivious and super observant. It all depends on what's caught his eye.

We are almost done with one of his medicines and so far so good...which is awesome! He will be down to two medicines with in a couple weeks. Then after a short adjustment period {from going off this one} I'm going to bring up going slowly off of the VPA also {it's thinning his hair and doing Lord knows what else}. I would LOVE for him to be on only one medicine. For now. Eventually my hope for him is NO medicine, but we will have to wait and see. I feel that with him we have to go really slow with getting off the medicines. Some day though I hope to be able to say he is medicine free!! Some day. For now it is enough to say he is SEIZURE FREE!!! Wow that feels good.

I wish I had a better way to share ideas with other people who have been or are in the same sort of situation as us. Recipe ideas and such. The diet can seem so overwhelming and I guess a lot of people give up on it because of that. I would love to be able to encourage other families to stick with it because it's so worth it in the bigger picture. So many people with seizures or a kid with seizures still don't know about the diet options...too many. I don't know if I even have the right words to describe how much that bothers me. To see first hand how beneficial it's been for my child and to know that there are many other children out there suffering that could possibly benefit from this as well, really frustrates me. I want to reach out to them. I think about what life would be like right now for my child if we hadn't stumbled across the diet on our own. I don't know how I would have hung in there for months upon months of non-stop seizures...watching my child suffer. Taking him in for brain surgery was our last option and it wouldn't not have left him with the quality of life he has right now, it most likely wouldn't have even stopped his seizures all the way. So yeah, four months was more then long enough. Now it's been four months with out, Wow...I just came to that realization. Four months. It all seems so distant now. Thank goodness.

We went on a walk at Blackberry park as we call it. One of the boys favorite places to go and it has a great walking trail. I was afraid to go there now that the blackberries are ripe for the picking because the kids LOVE to pick and eat the blackberries right then and there but Atty can only have 5 and it's hard to balance that out. I didn't want him to get upset that he couldn't have more and I didn't want to have to limit his brothers because I'm constantly having to restrict things for them that I wouldn't normally do. In order to try and balance things out and make it fair. I don't want them to resent Atty though because of all the limitations it sets for them as well. Anyways all went well and there were no melt downs. I distracted them at first so they wouldn't think about the blackberries and then when that wasn't working I let the other two pick away and told Atty I would pick them for him and how many he could have. I'm always telling him to enjoy the things he can only have a little of, to smell them and eat them slowly. So right away he was carrying the first one around and telling me he was smelling it, so cute! Then he ate it and said "mom I enjoyed it" Ha, ha! I slowly gave him his five berries to spread it out and make it past the blackberries and it worked. Another challenge meet. :) Atty really is such a sweet and understanding child for the most part. He just seems to accept how things need to be and trust that I guess. I know at some point there is bound to be a melt down over the diet but so far I'm thankful that it has gone so well. And since I know it works any struggles we do have will be worth it. Meaning I'll deal with the little stuff like melt downs because the pay off is so very amazing!

He did have to go in for a major blood draw, first thing in the morning, poor thing. He was being so sweet and brave and adorable...which makes it all even more sad when they stick him. The look on his face as it crumples and he cries and says owie is so hard to take. I refuse to let any one else pin him down and I always get attitude on that at first but afterward I always end up getting thanked for my help so go figure. I just gave him lots of love and words of encouragement as they blew up the vain in his hand and had to move onto his other arm. He's a hard draw. That's an understatement in fact. Four big vials and three little vials later and he was finally done. It took a moment to calm his wild cries and tears this time but as soon as he understood we were in fact actually done he settled down. Then I pulled out a shiny little stuffed lizard for him and his bravery and all was good in his world. He even said thank you and good bye to the girls and stole their cold grumpy hearts on the way out. Pretty cute. I love my little redhead. I'm so proud of him and how he has been dealing with all the complications that have come swarming into his life. He continues to amaze me.

Friday, August 6, 2010

Keeping it on the bright side

So my last post was a little down, but I'm feeling much better now.

I've not gone to see anyone about my anxiety, mostly because it's gone way down. I cut out coffee which helped a lot. Venting on here helped as well as talking with some really close friends and my husband about how I was feeling. It seems like once you get things out in the open it's easier to deal with. My husband was/is very supportive and he even brought home a list of people I could go talk to on our medical...which is nice to have just in case. I think the coffee was the biggest help of all though, silly as it sounds it really seemed to feed my anxiety. After a few brain dead days I feel better then I've felt in years and years. I've been drinking coffee since I was a teen and I never thought I would be able to get through a day with out it, seriously. But I truly feel better and I don't think I will make drinking coffee in the morning a habit again any time soon.

Moving on, since last I wrote we have made it through a few more parties and had a blast doing it. We went to a birthday party and I'll admit I was nervous about it. They were doing a pinata and everything...so the potential for disaster was high. I've yet to figure out anything that seems sort of like candy, so a get together and holidays that involve candy make me a little nervous. The only candy like thing I can make has to stay frozen or it gets mushy and so it doesn't pack well. Anyways Atty just happened to be playing in the pool with his daddy when the pinata fun started so my hubby stayed in there with him and our other two boys were able to join the fun. Atty didn't even notice, but we did have a back up plan. His Auntie had bought him some special little toys just in case he noticed the candy that the other children had. He brothers were so understanding and after eating two pieces each gave the rest of the candy to me to save for later before Atty saw it. I had talked to them about it before hand and that always helps. Being that they are only four and three it's really sweet that they are so understanding about their brother. I mean you know, candy is CANDY, and they still gave it up to support their brother. Gets my eyes all teary.

We also had a get together with Atty's biological brother and his family. His brother was placed with this family when he was six weeks old and we have been in contact ever since. He's two and a half now and it was wild seeing him playing with Atty. They were so much alike! We all had a banana cake I made to celebrate what we are calling Happy Family Day (we decided from now on our two families will celebrate Happy Family Day on August 1st), and Atty ate his special muffins so it worked out well. I put candles in the cake and the muffins and Atty didn't seem to mind at all.He's really be so accepting of this diet so far. We went to the zoo the next day and I packed a lunch for all of us, because I wanted to take care of our company but also so that I could be in control of the food to some extent and plan what Atty was going to eat around that. It went smoothly. Except for the fact that I brought four muffins that I tried freezing to see how that would work...and it doesn't work...they got mushy in the center when they thawed out and Atty declared them Yucky, so sad. I was hoping that I could just make big batches on the weekends and freeze them, sort of stock pile on them, since he loves them so much and goes through them so fast...but I guess that not going to be an option. At least the way I've been making them, maybe I will need to experiment a little more with it. Our company did want to buy the kids some ice cream or something to be nice. She talked to me first about it which I really appreciated and we settled on seeing if there were any snow cones. I read in a book about how you could get a plain snow cone and then add sugar free flavoring to it, like the stevita breeze powder so I thought we could try that. Unfortunately all the snow cones apparently came already flavored so it was a no go. Since there was no way to make a treat for Atty the subject was dropped and thankfully our guests realized that it wouldn't be fair to get any of the kids a treat if Atty couldn't have one.

Every time we successfully make it through a social function involving food I feel a little bit more confident. I learn new things every time it feels like and it makes the next time easier. I know that there are many more social events to come and right now I'm already trying to come up with different ideas for Halloween...the worst candy holiday of all!!! But with a little creativity I think we can make it work.

Atty is starting to not be so enthusiastic about food that he was loving before, which does make me nervous. There is so little for him to choose from that I'm afraid of running out of options and then having to force/bribe him to eat and it turning into a control issue. So far it's been a breeze for the most part and I've been really careful in letting him have choices when available and keeping things positive. He's starting to back off of the avocado some which I hate to see. The only meat he has been eating is his special hot dogs and turkey sausage and now he's not eating that as well, but doesn't seem to have anything else new that he likes more to replace it. He use to love chicken or roasted turkey but he's not into that right now either. He does love the muffins and they are made out of almond meal so there is some protein in there and he's eating certain nuts too so that's good. There seems to be a macadamia nut shortage or something because I can't find them bulk in my regular store nor have I been able to buy them bulk in the other two stores I looked at. I seriously don't know what that's all about. My regular store just told me that they haven't been able to get them in a while, but the guy didn't know why. They are the prized nut on his diet, so I really need to get my hands on some more!! I love that he is eating nuts because they are such a good source of protein and fat for his diet, but...they are so stinkin' expensive! One bag of almond meal is around eleven bucks and it only makes about 24 muffins! That only last about three days...so yeah, yikes! I think I'm going to need to order bulk on line and fork over the hefty price because in the long run it will save me money. The macadamia nuts are even more expensive then the almonds...and the cheapest nut {the peanut} he can't have because it has the highest carb content...of course. Nothings ever easy or straight forward on this diet. I guess because peanuts are not actually nuts that's probably why. The other nuts have carbs too, but because of the fat content, or something like that, his dietitian said I don't have to count those carbs. He use to love peanut butter, so I was sad to see it go. I can't get him to warm to almond butter he just doesn't go for it. I need to get a scale so that I can branch out in recipes for him. In all the Ketogenic recipes the ingredients are measured by weight, so in order to use those recipes I have to get a gram scale. I haven't done that yet because a good one is really pricey and I didn't know if I was going to need one or not. Being as he has to be on this diet for 2 years, and my creativity is starting to feel maxed, and he's already getting bored with the meals, I'm thinking I better just get a scale and jump in with both feet.

Saturday, July 17, 2010

Should be rosy

I keep waking up with this sinking gut feeling wondering if I remembered to give Atty his medicine the night before...or it will cross my mind mid day and I will stand there racking my brain contemplating whether or not I mixed up his medicine that morning. I've never forgotten his medicine, but it haunts me anyways. I have awake nightmares {and nightmares at night} along the lines of there being some sort of natural disaster and I am unable to get him more medicine and/or food for his diet and he goes into status epilepticus. The very thought of status epilepticus (which is doctors have mention way too many times) makes my heart lurch and my stomach turn. I don't want to think about it but I do. The thought of having to witness my son going into nonstop seizures with no way of helping him makes my anxiety spin out of control. I've read a lot of stuff about having survival kits for emergency and such and I've seen it mentioned that you should have extra medicine on hand so I'm thinking I will ask his doctor about having an extra months supply around...even if I have to pay out of pocket. I don't want to sound like a paranoid freak but it would give me such peace of mind I think, or at least a little. Extra medicine and extra oil plus foods on his diet that can keep like tuna and nuts.

It scares me that there is this beast looming to snatch up my child if we can't keep that beast at bay. If there is a break in the chain, if we don't make peace with the beast it will swallow up my child and not return him. How many days...or would it just be hours...how could I face that as a parent? The image skitters through my mind. I remember his 6 minute seizure in the hospital. How the panic scorched through my body and I shoved it down so that I could count and stay clear headed. I remember ordering the nurse to get the emergency meds and as she ran from the room I fought to say in control. How every second seemed like an eternity. The words that flew out of my mouth were not pretty. I lost all control of that part as I struggled to stay in control of the rest. I remember begging him to come back to me, telling him over and over again that it was all going to be okay, that he was going to get better even though at that moment I didn't know if it was true or not. Status epilepticus just keep ringing in my head. I think of that seizure and I know that I could not endure a seizure with no end...watching my child fade before my eyes in what looks like such a violent and unreachable way.

I think I'm suffering from post traumatic stress disorder or something. My anxiety has been overwhelmingly high for about a month now. I've cut out coffee...something I thought I'd never do...and that did help a lot. I've been trying some other natural things to that have helped some, but I haven't feel this sort of anxiety in years and years. It's making me irritable and easily frustrated. Not in a way that I can't cope with but I feel it and don't like it. Mix that in with a bit of depression (baby blues? I don't know.) and I'm a mess in the inside. I know this is always how I deal with stressful situations, I react to them WAY later on. I keep it together during the ordeal and then fall apart much later when it feels more safe to do so. I already had a total blubbery messy cry fest a few weeks after his seizures stopped and I thought that was me dealing with it, but apparently that was just the tip of the ice burg. I know I will come out of this but I think I'm going to need more help...I feel sort of stupid about it but I think I will see about seeing a professional that know about post traumatic stress disorder. Just so I can talk this through with them. It better then bottling it up. I've done lots of bottling my whole life and it's not good. So anyways that's what is going on right now. Everything should be rosy because he's really doing well, but instead I'm feeling my anxiety bubble up from deep with in and I need to get it capped pronto.

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!

Thursday, May 27, 2010

How can it be possible?

I feel like I just woke up from a really bad dream.

The kind of dream that hangs around even after you've crawled out of bed and you just can't quite shake it off.

It feels weird, all that we went through, I find myself questioning the whole thing.

How can we be having seizure free days after non-stop seizures for months? It's been one stressful event after another since January. The ER visits, the hospitalizations, the falling, the bumps and bruises, bloody lips, medicines tried, medicines failed, phone calls, doctors appointments, blood draws, and on and on and on. It feels so deadly quiet now. I find myself not relaxed like I thought I would, but on edge like a lull in a storm, waiting to be hit again. Can it really just get better like this?

Things just can't go from what they were to what they are so fast. Can they? So it must be that I was startled awake and it was all just a bad dream. Such a surreal four months could not possibly have existed.

Except we have the pictures, and the scars, and the journals, and the follow up visits.

I need to shake this feeling off and keep on moving on. We have a whole new set of issues coming up...like potty training, behavioral issues, and speech therapy. As well as keeping this diet successful, which is the most important thing of all. It may be the end of one part of this (for the most part) but we still have a long ways to go.

Wednesday, May 26, 2010

a BIG step ahead...

For the last few days Atty has had only a few really mild seizures. Not even the full body kind, just really short absence seizures and some stumbling. This morning after he woke up I went to put on his helmet and he resisted. I thought about it for a moment and then decided that I didn't want a power struggle. I need the helmet to be a good thing for the times he really does need it. So I said okay and took a deep breath. I thought back on how much he was falling before the helmet when we had to wait about a month to get it (that was so frustrating!) and how little he is falling now. Then I bravely faced the day (after calling my husband to tell him how nervous I was).

I can tell that he really likes the feeling of being helmet free. We had a couple of hot days and by the end of the day his head would be all sweaty. I would take his helmet off before bed and he would want me to rub his head and scritch (scritch being lighter then a scratch for anyone who's wondering, ha, ha) it a little because I think it would get all itchy. Anyways I am loving seeing his beautiful red hair again. That is definitely one of the things I was missing the most, I absolutely LOVE the color of his hair.

Gorgeous, shiny, brilliant, fiery hair.

This picture gets me all emotional. Because I've been waiting a while now to see the boys all playing together again...just like before. So far today I haven't noticed a single seizure!! I can hardly believe that we tried 6 different medicines and didn't get any relief...until we tried a diet. Wow.

Monday, May 24, 2010

What's for lunch?

Lunch time!Atty's is the monkey plate...on this day I gave him raw veggies because he can have more (certain kinds) of the raw verses cooked, I tweaked it a little and gave him slightly less then a cup of raw veggies so that I could give him a few thin slices of apple. Normally he can have 1/3 of a small apple as a serving or 1 cup of raw veggies. I have to pick them off of a list of acceptable vegetables. I gave him olives for fat and butter "candies" (each one being a tbsp of butter). Turkey sausage is some thing he really loves right now and I add oil to them to increase his fat intake. I also poured a little oil over the veggie sticks. I always give him a smaller plate because it makes it look like more.

Butter "candies" are just butter melted with Stevia and a flavor extract. I pour the mixture into ice cube trays and put in the fridge (or freezer) to harden. I put them on a tooth pick to make them like a sucker. I found this adorable heart shaped ice cube tray that I've been using and I want to see if I can find a good deal on some summer themed trays as well, to change it up a bit. He was just eating cubes of butter, but he doesn't seem to be very enthusiastic about that anymore. He tends to like a certain food exclusively for a while and then abruptly stop liking it. Which is a little nerve wracking when there isn't much to choose from on this diet.

He always eats one type of food on his plate at a time, then when he's finished he moves on to the next. He gets really upset if you offer him something else before he's done with the first thing. I am having to work on getting him to self feed again because he is capable most days but doesn't want to. He will pick it up and hand it to me and say "help me". I'm glad he's using his words (we've been working hard on that) and want him to continue to communicate verbally. But I get frustrated also because if he can pick it up and hand it to me he can certainly put it in him mouth! For a couple days he was really throwing horrible fits and refusing to feed himself, but I keep gently insisting and he seems to be self feeding more and more each day.

Two things he eats a lot of right now. I literally thank God every day he continues to like avocado. Seriously. We had to take him off of the heavy cream because of his reaction and it makes it a lot harder to get enough fat into his diet. Avocado is such a great fat for his diet, so I am very thankful that he hasn't tired of it so far.

Here are the fats that I rely heavily on. Lots of butter, grape seed oil and extra virgin olive oil. I wish he could have coconut oil but the one time we tried that (about a year ago) he had a reaction in the form of a body rash, and I've been afraid to try it since. His dietitian would like to try it again once his seizures settle down and we are in a good routine. It would be awesome if it worked for him because it's another good fat, and it's pretty yummy in flavor.

This is what was left over. Pretty typical. Not big on the veggies right now, but I keep offering because eventually he will nibble on a thing or two. It's a good thing that he likes to eat the same things over and over again...makes it a little easier. So that's what a normal meal looks like for Atty right now...exciting right?

I attempted to make a pan baked bread thing (with almond meal as the flour substitute)...like cornbread...only not. He humored me and ate a little. I'm going to attempt to make flax seed crackers next from a recipe his dietitian gave me. Wish me luck!

Saturday, May 22, 2010

{just rambling}

It's interesting how the dynamics have shifted around here. Spike, my youngest son, has always wanted to be in the same playing field as the big boys. Always striving to be equal to his big brother. Who is 15 months older then him. Spike and Atty are only four months apart, almost twins. Atty has always been bigger is stature then Spike and easily looks older then Spike by more then the mere four months. Spike has always been the 'little brother' the 'baby' of the family. That is until Strawberry came around of course. Even so he's still my littlest boy. Atty easily filled in the slot of middle child. I have noticed though that now ever since Atty's health issues Ira has switched and is now trying to be at the level of Bubu 'babying' his 'little' brother Atty. They cheer Atty's every little accomplishment together. They pick up the things Atty drops. They comfort him. They've been teaching him how to walk, and run and talk again. They protect him, and watch over him together like two big brothers. Spike took this on eagerly. But it snuck up on me. I watched him today helping to feed Atty and it struck me. They both treat Atty like he's the baby of the family now. Which is sweet but not all together helpful for Atty. He needs to start doing some stuff on his own again as he gets more capable but his brothers are always stepping in and doing it for him. I think Spike will probably always seem like the older one now in every ones eyes. He has in a lot of ways always seemed like an old soul and I know he likes to feel older so I don't think he will give up this new position if he doesn't have to. Atty's never been one to fight for much of anything, he's super easy going about a lot of stuff. It will be interesting to see where this shift takes us and how the brothers will adjust together. So far as I've said Bubu and Spike are pairing up. So Atty and Strawberry are spending a lot of time together. It's not that the other two boys are leaving Atty out, Atty just chooses to hang out with Strawberry and I instead. I always though of the three boys as being together in everything but now I don't know if that's the way it's going to go.

Atty went through another rough patch, he had to be switched to sugar free for one of his medicines and had a hard time adjusting. I think he might be coming around now. One of the days last week he had a lot of hard drop attacks. He kept falling down backward, it's a really wild thing to see because he just falls straight back for the most part. Like some invisible hand yanked him back. Anyways he got a bloody mouth three times and ended up with a super fat bottom lip. I for the life of me couldn't figure out how he was getting a bloody mouth when he was falling over backward.

I also made a mistake one of the days with his meals and he ended up with extra carbs and I think that is also why he had the really bad day that was worse then the bad days he was already having. The day he ended up with all the hard drop attacks, I had screwed up the day before. It didn't dawn on me at first until I was going over his meal tracking sheet and realized my mistake.

He's also having a harder time sleeping again ever since they upped the dose on the medicine that was causing insomnia before. They had upped this medicine fairly fast when he was having a super hard time a while back and it had caused major insomnia so we went down on it. Then at our last hospital stay they took him off the most recent medicine they had put him on, the one I had told them wasn't going to work and ended up in the words of his doctor "poisoning him after all". At that time they decided to again up the medicine by a little bit that was giving him the insomnia. I just wanted him to be able to go home so I didn't argue. But now it really seems to be making it hard for him to sleep again. His doctor said we could go down on it back to the previous dose, but I'm afraid to make any more changes until we figure out the other sugar free medicine. In the mean time I am losing a horrible amount of sleep with his waking on top of the sleep I already lose with Strawberry's nursing at night.

At the moment though he is playing at my side while I type and that's always nice to see. The doctors have told me that they don't know how much brain damage he has suffered because of all of this. I am amazed by how clear he seems to be considering the days upon days of constant under lying seizures he has endured since February. He's certainly not back to base line, but we aren't out of the woods on this yet either. Yet.

Thursday, May 20, 2010

A post in which I feel sorry for myself about people feeling sorry for me...

I just came to the realization that there are people in my life that are feeling sorry for me. Sorry. For. Me. I don't know if I can express how much this grinds me the wrong way. Empathy, compassion, understanding, care, love, support...those are all great. But I don't need anyone to feel sorry for me. There are people who are now leaving me out of things, not telling me about the happy in their lives because 'well you know, with everything that's going on with Atty'. Like all of the sudden my life is so horrible that I couldn't bare to hear about the happiness in other peoples lives (which by the way isn't me, even if my life was so horrible, I would still want to hear about the good stuff going on around me). People give me sad looks. All conversations center around Atty now. And not Atty as a little beautiful boy, Atty as in seizures. I get that there is a lot going on with him right now, I'm living it. But life goes on. Marches on. It has to. I have other children. I like all the same things. I'm the same person. So is Atty. There has to be a balance somewhere. I know friends and family are concerned and I love that about them, that they love us so much it's like it's happening to them. I know I just have to address it when they have the wrong idea about something. When they leave me out because "well you know, with everything that's going on with Atty". None of us ever expected this to happen and we are all learning together and I know I need to be patient and not get my feelings hurt, but it's hard. I can see the looks on some peoples faces when they are around us and Atty has a seizure. Uncomfortable, unsure, freaked out, and I feel bad for them. Why? I feel like I need to apologize to them. Make them comfortable again. I'm noticing, or maybe just imagining that I'm noticing the people that are drawing away, because they can't handle it. I really didn't think I had anyone in my life like that. I hope I'm just imagining it. This is the side of things that I hadn't really thought about until right now. I'm still processing it. My emotions are so wild right now that I tend to swing from one extreme to another so I have to really think things through before I act. I have felt feeling that I didn't think even went with a situation like this. Situation like this. I don't even like putting it that way. I guess I'm fight against anything even being wrong. I want to just smooth it all over, keep on going. That's not really possible and maybe that's what I need to come to terms with. We went to the park, my best friend and I, with our children. I could feel and see all the stares as I walked around with Atty. It bothers me I'm not going to lie. This isn't even going to seem rational but I feel like other people are thinking there must be something wrong with me to have a kid that has something wrong with them. Ugggg that sounds horrible, because of course it's not true. But I feel it, and I feel so judged. I saw people look away when I looked up, I saw people telling there kids not to stare and I freaking Hate it. I was choking down tears at the park. I was feeling sorry for myself, and I hate that even more. I'm just going to say this and people are probably going to dislike me now but I feel embarrassed to have a kid wearing a helmet*. And now I'm crying because that's a horrible thing to say. But it singles him out, it singles us out, and it makes people feel sorry for us even before they know what is going on. They get all weird and awkward. I guess as long as I continue to feel sorry for myself I shouldn't be mad when people feel sorry for us. Except I haven't voiced any of this anywhere else except on here, because I like to look strong and capable and ready for anything. Not like the self centered crybaby I look like in this post. I started this blog though for the real emotion, to journal the experience, and today...hopefully just for today...I am feeling sorry for myself.

I just wrote a self pity post about how much I hate it when other people feel sorry for me. Cue Alanis Morissette song now...Isn't it ironic, don't ya think...

*I just want to clarify that I am not embarrassed of my son, I am so extremely proud of him and how resilient he is. It's more that I'm shy and have struggled with anxiety all my life and don't like attention of any sort. I even hate having people sing happy birthday to me, because I hate having everyone staring at me and singing for me...I really, really don't like being singled out. Which is weird because I'm always choosing to go down the more unconventional path in life and to be an independent thinker, both things that can in some cases really single you out. I'm a bit of a complex gal I guess.

Tuesday, May 11, 2010


Atty's been driving me crazy with his constant mom, mom, mom's lately. Driving me almost to the brink of insanity really. He will say it over and over again then when I answer he will just stare at me. When I give up and go back to what ever it was I was doing he will start in all over again. Today I seriously had enough. He started in with the mom, mom, mom and I snapped at him. Told him to stop saying mom over and over again if he didn't have anything to tell me. He looked at me and said Momma? So now I know that he knows exactly what he is doing and he is in fact truly trying to drive me insane. I had to laugh in spite of it all.

Today(regardless of his evil plan) was a good day. He had maybe seven seizures. Maybe. If that. Awesome. Walking better, still not back to normal but at this point it could also be due to the high doses of medicine too. No diarrhea for two days, bonus. Haven't been giving him any whipping cream, just butter, maybe that has helped. He has been crying a lot at night though and saying ouchie and flailing around so I can tell some thing is still bothering him. I am so tired. Oh what I would give for a solid nights sleep. But I know that I will some day miss even this. When they are all grown up. I was thinking about how I just want to put all of this behind us but then I realized that I don't want to miss a moment of it because if I did I would be missing his childhood. This is him. This is our reality. I don't want to miss a moment. Today he covered me in kisses. He kissed me over and over again as if he'd been missing it. To feel his love for me was so heart warming. As mothers we do and do and do and so rarely do we get in return. Those little moments make it so worth while. Tomorrow we have his two week follow up with the dietitian. She said she would be able to give me some ideas for a dairy free diet. I hope it works and it is still some thing I can get him to do. Food is hard because I really can't make him eat. I can encourage, I can be firm, I can even bribe (which I HATE to do) but I truly can't make him. So far it's only been a bit of a struggle and a lot of give from me. A lot of letting go of how I would like him to eat, my idea of a balanced wholesome meal. A lot of wrapping my head around the fact that even though this is different and way off base for me, it's working for him. It's WORKING. I mean seriously, I felt that it could...but it is. I can hardly believe it. I keep finding myself wondering if it's only going to work for a little while like the medicine. I know I shouldn't think like that but there have been so many set backs during all of this that it's hard not to. Today I felt like I could breath, for the first time in a long time and it was so wonderful. I know we have a long way left to go, but I'm starting to feel that little flicker of hope that I lost there for a moment and it feels really good. I know that there are still going to be rough days and if we end up going all the way into the ketogenic diet I know it's going to be so much more intense but...seeing him today playing a tickle game with his brother and laughing...I will do anything.

Friday, May 7, 2010

Somethings got to change...again

He's having a reaction to the dairy. I feel so beyond frustrated. While I changed a child and a bed full of nasty poo in the middle of the night last night I felt numb. Beyond crying. We are just trading one thing for another around here. I knew it was getting worse but I was trying to deny it. Yesterday he started his weird behavior too, the stuff that looks autistic. This is the way he got before (over a year ago when we were trying to figure out his food sensitivities) when we reintroduced dairy into his diet. He starts giggling frantically about nothing, hitting his hand repetitively on the ground or flailing them around in the air. He starts having tantrums, and crying over nothing or everything. Sitting by himself rocking. Talking less, being unresponsive. It will just get worse and worse we already know that. So know I have to tell the dietitian that he is having a reaction to the dairy like I feared he would. Things are going to get real complicated. They said that we could try to do the diet dairy free, but they didn't sound very sure about it. Plus I'm all ready having a hard time getting him to eat what he needs to eat. Of course that could just be because his stomach hurts so much from the dairy and it might get better once the dairy is removed again. I knew he would have a reaction. I've seen it happen every time he's gotten his hands on some dairy. But the dietitian gave me the hope that maybe not this time because he's only eating the high fat dairy (butter, heavy cream) and none of the others that are high in protein lower in fat. I guess he's sensitive no matter what. He's just a super sensitive being. I don't want to go back to changing numerous poopy diapers a night like I was before discovering his sensitivity to dairy...so somethings got to change...again.