~seizure FREE me~

~seizure FREE me~

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.

Monday, May 3, 2010

Do our eyes play tricks, or can it be true?

Wow the modified Atkins diet is already making a difference! He's talking. In fact he's now driving me crazy with his constant repetitive "mom, mom, mom" All. Day. Long. Then when I answer him he just stares at me, fun. Then the whole thing starts all over again...I guess you'd have to be here to understand the sheer annoyance of it all, but I wouldn't wish it on anyone else. To be annoyed by him again, ahhhhh absolute bliss. ;) He's walking around too! Of course now that means he's falling more because he's still having drop seizures, but he looks so happy with his re found freedom. He's playing a little bit with his brothers and they are all adjusting to that. I am so pleased. I hope that we don't have to do the ketogenic diet after all, because it would be so much easier to stay with the Atkins diet. If it continues to make him better. He's far from base line and still having more then 20 seizures a day, so many that it's hard to keep an accurate count, so we have a long ways to go. I've read that drop attacks are one of the hardest to control. Progress is good though, real good. It does appear that he is having a reaction to the dairy, so I have to keep a close eye on that. It would be hard to do either of the diets with out dairy. He is suppose to eat a lot of heavy whipping cream and butter. He's not very fond of the whipping cream, but so far he loves the butter, cubes of butter, did you puke a little in your mouth? Yeah... I think one of the hardest parts of this diet is making it work for the whole family. Making meals that are not the same that still look the same. Giving Atty extra snacks and food that the other boys can't have that look like treats. Especially because in our effort to entice Atty we are calling them things like Candies and Treats and Ice cream. He hasn't been interested in food in general and he has to eat the high fat portion to make this diet work. He did eat a full avocado yesterday though, that was awesome. Every time I figure out something that he likes that works for his diet I get so excited. One of the worse parts of the diet is the sheer amount of time I spend in the kitchen now. I already spent way to much time in there, now I feel like I should just place a cot in there and camp out. Also Atty still can't feed himself very well, or doesn't want to try the food and so it takes a LONG time to finish meals. I really have to fight my irritation at that. My husband and I can hardly believe our eyes though, it's truly amazing the results we are seeing so far. I hope and pray that things continue to improve. Pray in the morning. Pray mid day. Pray at night. Wake up in the wee hours of the morning and Pray some more.

Saturday, May 1, 2010

A moment of weakness

Because all signs are pointing towards Atty having Mitochondrial disease (still waiting for results from the biopsy) I started doing some more research. I did research about Mitochondrial disease around the time that he had the severe reaction to his two month vaccines, but being as he is over three years old now I had forgotten a lot. I started watching videos about kids with Mito and now I can't stop crying. I feel anger (I can't really explain that, but I feel it in there somewhere). Frustration. Despair perhaps. Actually I really don't know how I feel other then the overwhelming sadness. MERRF or MIRAS seems like the most likely diagnosis for him, but there are lots of others. Both of those have lots of unknowns. Lots of things that Could happen. Not that will, but Could...the unknown is horrible. This is all so overwhelming. I keep thinking about him, how he was a few months ago. Just a few month ago. Now I can't stop crying. I know I'm getting ahead of myself, because we haven't received the results yet, the words haven't been said in all finality. But I feel sure of the diagnosis, there are just too many things lining up that point to this. I know that it's a waste of time to cry about this when I don't have a final diagnosis of Mito from the doctor yet, but I guess I'm feeling weak at the moment. I'm letting my fears take over. It's a pretty easy thing to do right now, I'm fighting a losing battle with my anxiety, something I've struggled with my whole life anyways. Sometimes I just need a good cry so that when I am faced with the battle for real I will have the strength to fight my way through. I'd rather have a break down at home in privacy then in the doctors office. I was going to post about how the modified Atkins diet is working (yes we are seeing some awesome results right now) and how it's not working (he's seems to be having a reaction to the dairy in the diet as I feared he would). I guess I will go into detail on that later, right now I feel really distraught and I wanted the Atkins post to be a bit more upbeat.