~seizure FREE me~

~seizure FREE me~

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

video

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.