snags are no fun

So we hit a little snag switching over to the GAPS diet. I started with introducing some honey, then properly soaked white beans, and then properly soaked lentils and all was going well it seemed. So then I introduced just a little bit of cheddar cheese as well. I didn't test it first, which I should have I guess. There is a way to test foods before introducing them on the GAPS diet, but I was hoping after being on such a strict diet already for two years {the Modified Atkins for Seizures diet} that we could just switch over slowly to the GAPS with out doing the intro and testing and all that stuff. I originally wanted to start with the intro, but our schedules have been so overwhelmingly busy and I didn't want to put of starting the diet any longer so I've just jumped in with out for now. Anyways I didn't notice any thing right away and then behavioral stuff started sneaking it's way back in. And he started wetting himself again. Just little dark spots on the front of his pants like he use to. It's like he starts leaking or something. He was very embarrassed about it, and would get really upset when I would ask him if he had an accident or tell him to change his clothes. It took me a moment to put two and two together I'm afraid, I mean it was nagging at me but I was hoping, once again, that it had nothing to do with diet. Then the sensory things started again, the panicked, overwhelmed, crying stuff started all over again in large groups of noisy people. We went to a place called Jungle Playland, that has all sorts of climbing equipment, slides, etc... it's like a giant indoor awesome playground. He fell apart {in the end he did start to play, but for the first half he clung to me and cried and looked absolutely panicked}. And that's when it hit me. It's starting all over again. I almost had a panic attack myself while we were there. Just thinking, Oh my Goodness, we can not go back to that! So I took everything but the honey back out of his diet again. And you guessed it... back on the right track. It will never cease to amazing me how much diet affects us in so many more ways then we realize! I am glad that we caught it when it was mostly behavioral this time. But this really hits home that his gut is still damaged and highly reactive. I have reintroduced the white beans a bit with no reaction and I really don't feel that it was the lentils. I feel very certain that it was the dairy. He was very sensitive to dairy before his seizures even started, so I knew there was a possibility that he wouldn't tolerate it. He just really wanted to try and I let him, and now we know. Not ready for that yet, possibly not ever.  Over all the GAPS switch over has been nice. To allow him unlimited veggies and fruit has been wonderful. Not having to count carbs, beautiful! Especially now that it's summer. He is able to eat out of the garden with out my having to count out 5 blueberries, or measure 1/2 cup of strawberries and then tell him he's done. That was really hard to do before, I just hated it! But no more of that, thankfully! I still want him to eat protein/healthy fats with his fruits and veggies because I feel like it helps balance things. But I've even relaxed about that when we are just eating out of the yard and I haven't noticed a problem with it, so I think it might be mostly a left over fear from when we were on the MAS diet. On that diet I had to pair all the carbs {his were from fruit and veggies sources} with a fat.  I'd have to say the honey is by far the best change. Oh the yummy treats I can make with honey! So much better then stevia. I still use a little stevia, mostly to sweeten cold drinks, like his lemon water or ice tea, but I have been able to expand his recipes and make the most delicious things! One of them being a trail mix made with honey that when processed a bit in a food processor doubles as a breakfast cereal. Will be adding that recipe soon! :)

Pinata, pinata, pinata...

We went to a family birthday party last weekend. I was told ahead of time that there was going to be a pinata, and his auntie said that she would buy Atty some special little toys to make up for the candy he can't have. Which was very sweet... I am thankful to have such supporting family members through this whole thing. The only problem left was how to deal with  piñata time. Should we take Atty somewhere else during that part? Should he just stand and watch? Should he participate and then give the candy to auntie for a trade? Everything else I had covered, I made him his special cupcakes for cake time, and I made him his type of bread and crackers, I packed his bag full of his type of food. But I just wasn't sure what to do at pinata time... I don't want him to feel left out, the magic diet already draws attention to him and has the potential to make him feel like he's on the outside of the group. So in the end I decided that if he wanted to participate he could. It's so hard to know what the best choice is. Last year {same kids party} my husband just distracted Atty, which was easier because he was littler. At yet another pinata party last year I just didn't call him over and there was so much going on he didn't seem to notice at first or care. I don't think he really understood. Plus there were toys in that pinata with the candy and he got some of those. This year everything seems a little harder in some ways. He's just so much more aware. I talked with him about the pinata. We went over what would happen and that he could choose to participate or not. That if he did participate he could collect the candy if he wanted to and then trade it with his auntie for special toys. He let it be know that he wanted to and that he understood. I also made him his freezer candies so that he would have his own treats as well. He was pretty excited about that. Pinata time rolled around and a pit grew in my stomach. Did I make the right choice? Would this blow up in my face, would he clutch the candy screaming and crying at the top of his lungs in front of everyone? I called him over like I said I would and he stood by my side, in the end he said he didn't want to swing at the pinata and clung to my side instead. When the pinata finally broke open, everything got pretty loud and scattered as kids scrambled for falling candy... and that is when Atty fell apart. A cry from deep down inside burst forth and he was lost. It was such a heart broken cry. He was completely overwhelmed. I quickly picked him up and walked away. We found a quiet corner to hid. I will admit I also became completely overwhelmed by his sadness and tears started streaming down my face, I had to swallow hard against the sobbing that threatened to escape. I feel so frustrated and helpless some times by all of this. Not that I really want any of my kids to have candy. I wasn't upset about the candy in particular, I don't feel like any of my kids really need to eat candy. It was just that he couldn't do what everyone else was doing, it's not a choice, he simply can't. I just don't want one to feel left out while the other ones have fun. I also don't want to make all my kids feel like the odd ones out, sitting on the sidelines watching all the fun. I sat with Atty while we calmed down and then we talked about it a little. I think it just all hit him at once and became all too real for him before he had a chance to process it. One minute the kids were taking turns swinging and the next candy was everywhere and the kids were going crazy picking it up. Atty doesn't do well in commotion like that and then the added context of candy just threw it over the top. Anyways after we had calmed down and talked {I had hid my tears fairly well from Atty, didn't want to add to the situation or make him feel like I was feeling sorry of him. Feeling sorry for ourselves won't do us any good. It is what it is. Sad at times, but over all good. } I asked him if he was ready for his treats. That brightened him right up. We went and got them and then he lead me back to the quiet spot to eat them. I really liked that he knew he needed more quiet time and found it on his own. He sure is growing up. All and all I'm not sure that I would have done it any different. Except that in retrospect I probably shouldn't have talked about so many times with him before hand. I felt like I wanted him well prepared, but I think it just made it a bigger deal for him, and I know by now that that doesn't actually work well with him. It works really well for one of his brothers, but it doesn't seem to work for him. Makes it into too big of a deal or something. He is sometimes very hard to figure out. I think I'm going to have to claim the pinata back for kids who can't have candy and get one for his birthday next year... and fill it full of toys. I've also decided from now on that when ever I know there is a pinata at a party I will get little toys and trinkets for all my children and then after the party any candy they bring home I will trade them the candy for the "special prize of toys and trinkets". Because I can't really have the candy sitting around the house anyways and they can't eat it in front of Atty. Plus they really liked Atty's toys and I have a feeling all in all they feel like they are the ones that ended up on the short end of the stick. Candy... who cares. Toys last longer and are way more awesome. :)

The power of candy

So.... all my hard work was almost challenge in a split second.

I had to take our van in for some work and the place we went happens to be in our mall. So during the hour and half wait I took the kids to the play area in the mall. My nightmare as I am not a mall person AT ALL. The kids were having a blast though, running around, playing on the toys, and with the other kids. Toward the end of our time there Atty and his brother were talking to some other kids and their parent. I was watching them and helping their baby sister on a toy. I look up at them, then down to Lala {nickname} and then back up at them. At that moment I realize that Spike {nickname} is putting something in his mouth and Atty is about to! I said "Atticus Stop" sternly and loudly so that everyone was looking at me. It was a bit embarrassing but I need him to understand the importance of what I was saying. I called him over and in his hand was a candy! Candy, the thing I have been strictly avoiding because of his diet. The last place on earth I thought he would get his hands on something restricted was here. Really it hadn't even crossed my mind, and I'm normally on high alert for this sort of thing. You are not even suppose to have food or drink in the play area! All the get togethers we have gone to where I have followed him like a shadow making sure to tell people about his diet and enlisting others to help me keep an eye on him. All the get togethers we have skipped to keep the stress of the diet down. I was in shock. I quickly took the candy away {It was just a little thing, but after coming so far on this diet I refuse to risk it.} and told him why. Briefly and to the point, then I let him know that he could have one of his treats when we got home. He accepted this and didn't throw a fit or anything. I would have understood if he had, because he hasn't been handed candy in a year and he is a kid after all! Candy is candy, and we all love it and one point or another. I was so proud of him. Because I was in shock and because I'm too freaking polite I didn't say a thing to the man who gave them candy. He didn't speak a lot of English anyways so trying to explain Atty's diet and all wouldn't have worked out very well. He seemed really sorry and said so, but I just could not believe that he gave anything to my kids! I sort of thought it was an unspoken rule that you don't feed other people's kids. The part that really upset me the most frankly was that they even took candy from a stranger in the first place. I know I was there so they felt comfortable, but we have had so many talks about this sort of thing. To see how easily it is all forgotten is disturbing! We had a talk about it after leaving and will be discussing it daily for a while to really sink some lessons about strangers into their little heads. I'm not one for scaring my children about strangers, but I do believe in teaching them about stranger safety. Which is why I was so upset at how easily they accepted something from a stranger. Candy, it is powerful and that power is scary!

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!

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!

{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.

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.