Thursday, January 31, 2013

Its been a rough week

This food allergy stuff is not easy. As we are coming up to almost a month of being gluten/dairy and now food dye free, the newness is definitely wearing off. And while knowing the right foods he can eat is getting easier, the fact that he cannot eat certain foods is not. Friday at school they had a birthday. All the kids got donuts. I didn't know it was a birthday so I was unprepared. I had trail mix in my car. So he ate trail mix. When I picked him up, he said he didn't care, but he was grumpy. I know that it has to bug him. Especially because he LOVES donuts. Friday night we went to a birthday party. It was a movie night party with pizza, popcorn, and treats. So I fed him dinner before we left, popped our own popcorn, (most of the store bought stuff has yellow "natural" food coloring...thats no where near natural) baked him some gluten free brownie cupcakes and headed to the party. He was fine with his stuff but I could tell he was looking at that treat table the whole time. There was sour patch kids on the table. He loves sour candy, so I looked it up and they are gluten free!! I know that he is very sensitive to red and yellow food dye so I kept those out. So i gave him the green and...wait for it...the orange ones. Mom FAIL. Did I not go to kindergarten and remember that red and yellow make orange. So I paid for it immediately. He was crazy hyper. Could not sit still. Kept giggling, repeating certain phrases over and over, couldn't keep his hands off of me or Olivia. He even said at one point (speaking as fast as humanly possible) "Mom, I think I had too much sugar, I should never have sugar again" On the way home, he had a panic attack because he had to pee and it took us two whole minutes to pull into a fast food place. His panic attack, coupled with the food dye, game him an asthma attack. This was the the first time time the entire month that he had to use his inhaler. We were both so bummed. He kept saying "I don't need my inhaler anymore, I don't eat gluten. Broke my heart. It was my fault. I didn't think it through and fed him something that is like poison to his little body. We paid for it for the next 24 hours. He didn't feel better and get back to his happy self till he woke up Sunday morning. hard.

So Monday comes, he goes to school and when I pick him up, one of the moms asked him how he liked the vegemite. He said he liked it. Ut-oh. I asked him when he got to the car what she was talking about. He said she talked about Australia and then they had some food from there. Vegemite and something with coconut on it. Here we go again. He said "I had it on a spoon instead of a cracker so I wont throw hissy fits" I looked it up and the main ingredient is barley. Gluten filled barley. And the coconut thing? A coconut cake. The mom didn't know, and his teacher was not out there with him. And since its so new, she's not used to this either. I don't blame anyone, but it's just frustrating. That day was bad. He cried and flopped on the ground every time I asked him to do one page of homework. He was moody, angry, and mean. He had a huge hissy fit when I told him it was resting time and needed his inhaler again. It is SO crazy what food can do him.

The last two days have been really hard too. He comes home from school and is just grumpy. He has thrown hissy fits both days but insists that he didn't eat anything from school. It's SO hard to do this when I am not around him 24/7. He's 5, he loves food, and is used to being able to eat anything. So when he eats something he is not supposed to, I can't get mad at him. We are learning. All of us. And I'm hoping that he continues to see how he feels when he eats something that he is not supposed to and decides he doesn't want to feel that way. I just have to keep giving him grace. I have to understand that even if he hasn't eaten something he is allergic to, he might just be having a bad day. I have to remember that he is 5 and will still get upset and make bad choices. I try to remind him that he still needs to treat us with kindness and respect even if he isn't feeling good. I tell him I know that it is harder to be nice when he's feeling bad, but that it is not an excuse to lash out on everyone. And while I understand why is he doing it, its still not ok. When he yells at us, or throws a hissy fit, he always runs to his room and says "I'm a bad boy". I have to constantly remind him that he is not a bad boy, he is just making bad choices. After he has calmed down, he has asked me if I am going to get sick of him. This breaks my heart the most. Every night I have to reassure him that I love him no matter what his choices, and that I will NEVER get sick of him. I have to give myself a little grace too, but that is not as easy. I get very frustrated and sad when he throws fits. I blame myself for feeding him the wrong thing, or not handling the situation right. I get so bummed that I work so hard to feed him the right stuff and when he's away from me, one little thing ruins the next 24 hours (or more) for us. All that hard work down the drain. Its emotionally and physically exhausting for all of us.

Now I want to talk about my husband Kevin. He has been my absolute rock through all of this. He is amazing. He has so much patience and tenderness with Toby. Once he saw that it really was the food making Toby act this way, it really changed his heart with regards to Toby's fits. He used to get totally frustrated with him, as did I. But now, Kevin sees it in a much different light. In the middle of a fit, Kevin has been able to go in and just talk with Toby. He stays in there even when Toby is screaming at him to leave. He just sits, listens, and talks about his day, legos, star wars, army men...anything. He talks calmly and quietly, without emotion. Just two boys, hanging out. And this is EXACTLY what Toby needs. He calms down so much faster. And always comes out with a smile and an apology. I now call him the Toby whisper-er.

Olivia is also having a bit of a hard time. She has started lashing out by talking back and yelling at us for little things...big things...anything. I picked her up from school early yesterday for a mommy coffee date. I asked her how she's feeling and she told me that she feels like we pay attention to Toby and not her. Talk about a dagger through the heart. Its totally true. We spend so much time and energy trying to get Toby healthy. She is healthy, she can do things by herself that Toby cannot. So she gets less attention. I am trying to fix that. One day at a time. I want her to know that she is just as important, just as attention worthy, just as loved.

And that...takes more energy. I feel like I am out of energy. So if you are the praying type, could you say a quick prayer for me...for our family today? I am tired, and spread really think these days. I am trying to remain positive and thankful.I WILL get through day at a time.

Monday, January 21, 2013

Tobys New Journey

So Toby has been gluten and dairy free for two weeks now. I cannot even tell you how beneficial it has been for him. (As well as the rest of the family) Wow...where do I even start???
Toby is a happy kid. Like...a REALLY happy kid...till he's not. There are two Toby's. There is the sweet, kind, easy going and happy kid that he is when he is around most people. And then, there is crazy Toby. And this Toby only comes out at home. Anything at all could set this Toby off. A TV show being turned off, me telling him to do something simple like get dressed, or even a tower of legos falling down and breaking when he wasn't ready for it to. These are normal life things that happen. Things that normal kids can handle. But sometimes Toby just could not handle life. He would have the worst melt downs. When he throws a fit, I mean, he takes things to a whole new level. He screams...SO loud. Cries hysterically without any chance of calming himself down. He would cry and scream for so long that he would give himself asthma attacks. He would be coughing and hyperventilating, gasping for air. He would scream irrational things over and over like "I just want my door open" when it was open. He would go on like this, flopping and rolling all over his room, running into walls, kicking and hitting the walls. Hitting himself in the head saying "I'm an idiot" over and over. (I am in tears right now as I right remembering some of the worst ones where by the end of 30 minutes we would both be sobbing and I would be begging God to help us just get through this) One day, after a really bad one, I asked him what I could do when he was like this. I felt like there was nothing I could do to help him. He looked at me with the saddest eyes and said to me "Mom, just pray for me". He went on to tell me that he hates throwing hissy fits and just wishes God would help him stop. As a mom, my heart was broken. My kid does NOT want to act like this. He does NOT just need to be spanked/disciplined. He could NOT control himself. He needed help.
After lots of thinking,praying, and researching, I realized that the times that he acted the worst, was when he ate something he was allergic to. He is highly allergic/sensitive to red food dye and he always seemed to be the worst after ingesting some of it. Even waking up with a fever one night after giving him a bite (yes, a bite!!) of red velvet pancake. It was affecting his body. And now it was affecting his mental health. It was time for a change.
*After two weeks of gluten and diary free I am so happy to report: The hissy fits have stopped completely! We have only had had 2 melt downs (mini hissy fits)in the two weeks. One happened after church one Sunday. I was really discouraged till I realized I forgot to tell the people at church that he couldn't have snack and he ate goldfish and pretzels (both use red dye no. 3 as a preservative) He literally came home from church, laid on his bed crying, flopping back and forth repeating "I don't want to go to sleep, I don't want to go to sleep, till he eventually passed out after 10 minutes later. The other happened after church because they gave him red koolaid. (which is gluten free but again red food dye). We spent all day waking on egg shells around him because everything made him cry. He even said to me "Leave me alone mom. Im grumpy and just sick of myself" I cannot BELIEVE how much the food he is allergic to affects his mental health. And it gets me really sad for all those "bad" kids out there, whose behavior could be completely changed with small diet changes. (But thats a whole different blog.)
*His asthma has also been non existent since he's been gluten and dairy free. Not one asthma attack in two whole weeks!! That might not seem like a lot, but he needed it almost every day before. Especially when the weather goes from cold to hot like it has been. He has even been out running around twice for over 20 minutes (which again, might not seem like a lot but that is a long time to be running around for an asthmatic kid) and I would go grab his inhaler because in the past he would have needed it, but nope, he didn't. Its been AMAZING.
*He has been so happy, so much more of the time. He still has has moments, where he gets upset or agitated, but it is manageable. I can talk him down, where before nothing could talk him down. When I tell him to do something, he jumps up and says "ok mom". It catches me off guard every time because before when I would ask him to do something, I would brace myself to get ready for battle. But no battles, the worst he does now, is ask me if he can do it in a minute when he is done with whatever he is doing. WOW...such a change.
*He is sleeping better. Over 12 hours a night without waking up. He had stopped taking naps in October, but has napped, without complaining 5 times in the last two weeks. He even put himself down for those naps!! Even he sees how much this diet is helping. It was actually a blessing that he got the foods he was allergic to those two times because I was able to point out his behavior after he ate those foods. He understands. So he doesn't complain when he cant eat certain foods. I tell him they have gluten in them and he doesn't ask again. He sees how much better he feels. Our house is SO much more peaceful. I am SO thankful that certain information and experiences have been put in my path so that I was educated on this stuff. I am so greatful to everyone who gave me support,tips, and their knowledge when I was researching this stuff. Everything is coming together and feeling much more normal after two weeks. Praise the LORD!