...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!!!

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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.

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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.

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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.

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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.

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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.

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Okay I'm done rambling for now...