Tuesday, August 30, 2011

It's All Fun and Games Until You Have to Leave the Bubble

This summer, we had a lot of relaxing time at home.  We had time to find all new foods for Bubble Boy to enjoy and naively, I started to think this allergy thing wasn't going to be so bad.

Oh, you silly mommy.

Since preschool has started back, Bubble Boy has gone to school 7 days.  2 of those days have included food activities--food activities that he could not participate in.  For now, he isn't showing that he minds this at all.  I let him decide what to take as a substitute and he is fine with that.  But I know that as he gets older, this isn't going to be so easy.

Yesterday, the boys were home with me, and we went out to run a bunch of errands.  I packed 2 snacks, but when we were only halfway done, the snacks were gone and Bubble Boy was complaining that his tummy was rumbling.  So there we were, surrounded by restaurants, and there was nowhere to go to get him some food.  (Water, water everywhere and not a drop to drink.)  So I had an idea--we were going to our library and they have a small cafe inside.  Knowing the kinds of food that are normally offered, I was pretty sure there would be fruit there.

And there was fruit!  Score!  I was so proud that I had figured out a great snack for him on the go.  I ordered both boys a bowl of fruit salad (which was pre-made and sitting in a cooler case).  The fruit salad contained honeydew, grapes, cantaloupe, and strawberries.  Bubble Boy doesn't like strawberries, so I transferred them all over to the Carnivore's bowl and he devoured them immediately.  After only a few bites, Bubble Boy started telling me that the fruit was burning his tongue and he didn't want any more.  I was surprised because fresh fruit is his absolute favorite.

Within 15 minutes, he was having sharp stomach pains and by the time we got home, his lower GI system was going haywire.  We know he's allergic to oranges, but there weren't oranges in the salad.  The only thing I can think of is that maybe he is also allergic to strawberries and just having them touch the other fruit bothered him??

This experience was so discouraging to me (and certainly no fun for Bubble Boy) as it was a reminder of just how limited our options are for eating away from home.  If I can't even feed my kid fresh fruit from a restaurant, that is just sad....and frankly a bit scary.
I have to admit that I've been pretty angry ever since then.  I think it is finally hitting me that this is for real.  While it is true that Bubble Boy could outgrow some of this, it is also true that this could be our reality for the rest of his life.  And that ticks me off.  For the inconvenience that it causes our family, but especially for Bubble Boy, who (because of the fact that I'm in charge of his diet) doesn't even know how hard this is going to be yet.

And even though being mad isn't going to help anything, I'm going to allow it. 

And then I'm going to pack a cooler of food in our car to keep on hand for days like that.

Wednesday, August 24, 2011

Crazy for Eggs

After all of the allergy testing we did with Bubble Boy, we knew that the offending foods definitely contributed to his tics.  But tics aren't Bubble Boy's only symptoms.  He has eczema-prone skin, has had hives on a few occasions, and doesn't have the most stellar digestive track record.  But out of 11 foods, we weren't sure which foods caused which symptoms.  The allergist encouraged us to do food challenges and we knew for sure that peanuts/almonds caused tics and we suspected also hives and cottonseed, chicken, and corn definitely caused tics.  We never did an egg challenge until a few weeks ago, and we decided that since the doctor made him a formulation that should allow him to enjoy eggs in very small amounts, we would give it a shot.  We had french toast for dinner--one of Bubble Boy's absolute favorites.

We didn't notice any issues that night and we were so relieved.  The next day we went to a local water park and Bubble Boy's behavior was out of control.  This is so not like him and it was odd.  It was like he couldn't even process what I was telling him to do.  He was doing bizarre things like sticking his head under my dress (bathing suit cover up) and being more reckless than he normally would.

That night, I talked to Rocket Man about it and brought up that the eggs could be the culprit.  He thought it was possible, but also said it could just be the excitement of the water park, which was also true.

This past week, we were out of town and we stopped at Waffle House for a bite to eat (we always know that anywhere that makes a grilled cheese can usually accommodate Bubble Boy's allergies).  But once we got inside, Bubble Boy begged for a waffle.  Knowing that the waffles contain eggs, I decided to let him have it and see how it affected his behavior.

The next day, he was out of control again.  It was bizarre.  His behavior was such that, if he was like that every day, I believe that once he got into school, they would have labeled him ADHD or something like that.  And even though I was having to scold him, I felt sorry for him, because I knew that that wasn't really him, and I knew that he couldn't even help it.

It really makes me wonder about kids who have been labeled or who have behavioral problems and if food allergies could be a culprit.  It also makes me sad to think that kids like that might be taking medications that they really don't need when they could just make some dietary changes.

We are so lucky that we picked up this so early.

Monday, August 8, 2011

The School Supply I Never Thought I'd Buy









This year, I will be making a visit to the school nurse to leave an EpiPen with her.  Although I am going to be discussing Bubble Boy's allergies with his teacher and making it clear that he should not ingest ANYTHING unless it is sent to school by me, we are going to do this just to be safe.  It's true that up until now, the worst of Bubble Boy's reactions to food have been hives, upset stomach or neurological tics, but it is also true that allergic reactions can suddenly get more severe without warning.  It is also true that sometimes they get less severe or disappear completely!

But for now, we are playing it safe.  My hope is that it sits there all year gathering dust.

And for anyone who is interested, this is the letter I will be hand delivering to his teacher on Thursday:

Dear Ms. Preschool Teacher, 
Bubble Boy is so excited to begin this school year with you!  I know it will be a great year.

Recently, after dealing with a number of transient tics and an outbreak of hives, Bubble Boy was diagnosed with multiple food allergies.  The allergy testing revealed that he is allergic to:


Clearly, we have had to make drastic changes to his diet!  Because many of these allergens can be a “hidden” ingredient in some foods and because there are so many to keep track of, my request is that Bubble Boy is not given access to ANY food unless it is something that I have sent in for him.  (For instance a store bought chocolate cupcake would likely contain corn, cottonseed, eggs and chocolate.)  If you can give me notice anytime there will be special treats (cupcakes sent in for a birthday or any fun learning activities that include food), I would be happy to send him in an equivalent item.  I would also be open to taking the responsibility of room mom if you think it would make things easier when planning food activities.

Thankfully, Bubble Boy has never experienced a severe life-threatening reaction to a food item.  However, we know that food allergies can get more severe with time (or sometimes they can go away altogether!).  For this reason, we have an EpiPen for Bubble Boy and will be leaving it with the school nurse in case of an emergency.

I don’t foresee any problems this year, but I do want to make sure we are on the same page.  Please feel free to contact me with any questions.
The Reluctant Crunchy Mom

Saturday, July 23, 2011

Healthy, Kid-Friendly Recipes

.....that also happen to be allergy free, but it kinda depends on what you're allergic to. 

I've been forced to get creative around here with literally every single thing that goes into our mouths.  And while it's a whole lot of work, and frankly sometimes, a whole lot of money, I am for the most part thankful.  Obviously, I am thankful that Bubble Boy is doing so much better.  But even more so, I am thankful that our whole family is eating better, widening our horizons, and paying attention to our health.

Personally, my tastes are changing and no one is more surprised than I am.  I can't even think about eating most fast food anymore.  And last month, I was at the store and Keebler cookies were buy one get one free.  I bought some Deluxe Grahams and Grasshoppers and got them home and found that I couldn't even force them down.  I had absolutely no taste for them

So without further ado, here are some of the new recipes I've been trying!

Let's start with side dishes.  I was killing myself looking for main courses that didn't include chicken, beef, or shrimp, and finally I realized that if I found enough healthy sides, we could make a meal out of side dishes! 

The whole family likes this garlic parmesan orzo--a little more tasty and sophisticated than your regular mac and cheese.  Bubble Boy gobbles it up!  Last night, we had quesadillas and I made this quinoa and black beans.  Now Bubble Boy didn't like this one, which is just as well, since he is allergic to both corn and onions (I kept him a small serving out before I added those ingredients), but I thought it was delicious!  Not to mention that the Carnivore gobbled up 2 servings.  This will be a great, healthy, hot lunch for him during the school year.  Sweet potato biscuits (from the recipe book "Appetite for Reduction") were a great side dish one night when we got pork barbecue from Whole Foods for dinner.  Neither of the boys were crazy over them, but they ate them without a battle, and since they won't tolerate sweet potatoes otherwise (even sweet potato fries--they're crazy!), I count it as a victory.  

I only have two main courses to share with you, but they are both great.  First off, is Snobby Joes.  A vegan take on Sloppy Joes--but don't worry, no fake meat involved.  Green lentils are used in lieu of ground beef.  I made them sans onions so that Bubble Boy could have some.  Not surprisingly, he didn't jump on board, but it wasn't really up his alley, taste-wise, so I wasn't too disappointed.  I loved them and while I served them on bread the first night, I ate the leftovers on tortilla chips and melted shredded cheddar on top.  Delicious!  Tonight we grilled out some wild Alaskan salmon on wood planks.  Expensive, yes.  But when Bubble Boy's dinner plate goes from this (and that's the garlic Parmesan orzo):

to this:

it makes it so worth the splurge!!

So now for the really fun part--the baking.  Bubble Boy is allergic to eggs and chocolate, which puts a dent in baking, for sure.  While I do seek out vegan recipes, because they've already accounted for not using eggs, I have gotten brave enough to start doing my own substitutions with other recipes.  Friday afternoon, I made Banana Oat Muffins, but I kinda did my own thing with the recipe, and they came out beautifully!  Here's the way I did it:

 3/4 cups all-purpose flour
3/4 cup whole wheat flour
1 cup rolled oats
1/4 cup white sugar
1/4 cup brown sugar
2 teaspoons baking powder
1 teaspoon baking soda
1/2 teaspoon salt
2-3 tbsp wheat germ
2-3 tbsp ground flax seeds
1single serve container of organic unsweetened applesauce
3/4 cup milk
1/3 cup vegetable oil
1/2 teaspoon vanilla extract
1 cup mashed bananas (which for me was 2 medium bananas)
Mix the dry ingredients.  Mix the "wet" ingredients.  Add the dry ingredients in and mix.  Bake at 400 for 18-20 minutes.  My version of the recipe made 14 muffins.

We have also been making a lot of pumpkin recipes (muffins and cookies), but I seem to change the recipe up every time, so I don't have it down to an exact science.

Then today, I made these Peanut Apple Pretzel Cookies from the recipe book "Vegan Cookies Invade Your Cookie Jar".  Since Bubble Boy is allergic to peanuts, I used sunflower seeds instead, but only about 1/4 cup.  They're great and hearty like a granola bar.  The Blackstrap Gingersnaps from the same book are simple and delicious, but I favor this gingersnap recipe because it turned out crunchier.  I had to do an egg substitution here (I think I subbed some oil and one Ener-G egg replacer).

I always love to hear about new recipes.  If you have a good one to share, feel free to leave it in the comments or email me at crazyallergickids@gmail.com.

Monday, July 18, 2011

Fig Newtons for Breakfast

Last Wednesday, I took Bubble Boy back to the allergist.  When we found out about all of his food allergies, the doctor told me that if we chose, they might be able to make up a neutralizing formulation specific to some of the foods that would allow Bubble Boy to eat them in moderation.  Doing this meant a lot more pokes (shots) and on that day, Bubble Boy had been through enough.

I explained to him that the doctor might be able to help him eat more foods, but he maintained that he didn't care how much he was allergic to, he didn't want any more pokes.  Frankly, he's been through so much, I wasn't going to push the issue.  I left it up to him.

For a few weeks, he stuck to his guns.  No more pokes.  Then we realized that he really is allergic to corn, and his crazy diet got a lot crazier.  One night at dinner, we were trying to encourage him to get the pokes so he could eat more food.  Finally, I threw down the ultimate gauntlet:

"Bubble Boy, I am worried that if you don't get any pokes, there won't be a single thing in your Halloween bag that you will be able to eat."

I know that sounds like a terribly mean threat, but it is absolutely true.  Being allergic to peanuts, chocolate, corn and cottonseed is a death knell to Easter baskets, Christmas stockings, and Halloween candy.  (I'm not all evil--I had been thinking ahead and planned to replace all of the candy with organic or all natural candies.  I had also thought of the option of "buying" the candy from him and giving him money for it that he could use to buy a toy train.)

But he made up his mind.  He would make a black belt decision (he takes karate) and opted to get some pokes.  In the spirit of leaving this decision in his hands, I also let him decide which foods he would get pokes for and therefore be able to eat.  He chose corn, peanuts, cottonseed, chicken, and eggs.

So on Wednesday, we spent 6.5 hours at the allergist getting tons of pokes.  It was a rough day, because of the screaming and crying during the pokes, but also because as they gave him the little injections under his skin, I could see his body begin to betray him.

As they did the egg test, he began wildly clenching his hands.  During the peanut test, his scalp began to itch and he got bizarrely hyper.

They formulated the drops for him and explained what I already suspected.  Taking the drops doesn't mean that he can just go crazy and eat all of these foods.  We are practicing extreme moderation and we also have to be sure to alternate the foods that he has.  My general plan is to keep feeding him the same foods at home, so that when we are out and about, he can do a little bit of cheating.  For instance, our grocery store offers kids free sugar cookies.  Now he can eat one when we go, even though it contains eggs, and I'm sure, some sort of corn product.

He had to take the drops for at least 3 days before trying any of the foods.  His first request was fig newtons, so on Saturday morning, I served this up to him for breakfast.

And after dinner last night, he asked for 5 mini marshmallows for dessert......and got them.

Even though we're not going to be going crazy with this--I'm so happy for him that he has a very little bit of wiggle room.

Sunday, July 10, 2011

The Questionables

Now that we have been on this allergy journey for about 6 weeks, we've kind of figured out how to eat around here.  Kind of.  It's still a struggle, but we're making it. 

We removed the 10 offending foods from Bubble Boy's diet and noticed vast improvement.  But we still see "flare ups".  Some flare ups, we can trace back to mistakes we've unknowingly made.  But some flare ups that we can't trace back to any mistakes that we know of.

Enter the Questionables.

You see, when his allergy testing was performed, there were foods that he definitely WASN'T allergic to and there were foods that he definitely WAS allergic to.  In the middle, live the questionables.  After finding out that Bubble Boy had 10 definite food allergies, the doctor told us to remove those foods and not to worry about the questionables right now.

But when he's eating right, and the symptoms still show up sometimes, the questionables are a good place to look.  Unfortunately, there are a lot of them.  Let me break it down for you like this. 

Bubble Boy was tested for 34 foods.

He was NOT allergic to 13 of those foods.  Interestingly enough, there was only one food that he had absolutely no reaction to at all.  It was cane sugar.

He was definitely allergic to 10 of those foods.  The list is on my sidebar.

Which means that 11 of the foods were questionable.  These foods are:
Salt Water Fish
String Beans
American Cheese
Cheddar Cheese
Parmesan Cheese

Yikes, right?  So we were able to trace back some of his flare ups to times when he has eaten corn, corn chips, popcorn, and corn Chex.  Not to mention that corn is in everything.  I'm not kidding.  Everything.  That glass of water you're drinking?  There's corn in it! 

Not really, but it feels like it sometimes.  Think of corn syrup, high fructose corn syrup (which we would like to avoid as much as possible, but with 10 other things to worry about, it's hard), and corn starch.  It's even in baking powder, which is why we ate some flat muffins the other day.

So we did a corn test.  We completely eliminated corn from his diet for 4 days.  Then gave him full blown corn (you like how I referred to it as full-blown corn, almost like it was uncut heroin or something) in a "controlled setting", aka our dining room.  His tics were flaring up within a few hours.  Nothing terrible like the time he had cottonseed oil, but definitely there.

While not on the questionable list (he didn't even get tested for it), we are contemplating that cinnamon may be a problem.  Mostly because in my baking frenzy, I believe cinnamon has been the common ingredient in all of my dishes and he was having a steady hard time with his tics.  Rocket Man and I had discussed this possibility, and then Rocket Man had lunch with his half sister and happened to find out that she was allergic to cinnamon. 

What do you know? 

I've kept him off cinnamon and will do a test in a few days.

So, as you can see, we've been up to some serious adventures around here (not).

Now I'm off to sneak a Krispy Kreme doughnut that I've hidden from Bubble Boy because it definitely contains 2 confirmed allergens and at least one questionable. 

Shhhh, nobody needs to know but you and I, my invisible friend.

Tuesday, July 5, 2011

I feel like I've been neglecting this--my second, smaller, red headed stepchild of a blog.  It's mostly because I've been busy.  Busy and discouraged.  Or maybe busy being discouraged.  Bubble Boys tics are increasing again.  They're still not as bad as they were, but they're pretty bad right now.  I find myself wracking my brain constantly trying to figure everything out.  It wouldn't bother me so much if I realized that we had made some food mistakes, but when we think we're doing everything right and this happens, it's confusing.

I keep coming back to corn.  How interesting, right?  (not)  Corn was one of the many "questionable" foods that showed up on Bubble Boy's test.  And it's in pretty much everything.  Seriously.  Think of corn starch and corn syrup and high fructose corn syrup and corn oil.  It seems like I can at least track other tic "surges" to him eating corn on the cob, corn Chex, and corn chips.  So starting today, I am removing corn for 4 days, then I will do a corn test.  And to do it (on top of the 10 other foods) seems to take as much work as sending a rocket into space.

But now I want to stop complaining a bit and talk about some victories.  Bubble Boy has agreed to try new foods every day, and he's doing great at it.  Granted, he only likes about 10% of what he tries, but that's okay.  We keep plugging along.

First there was sunflower seeds--he likes them!  I was shocked.  Then yesterday I bought pumpkin seeds which are high in protein.  He didn't like them that well, but I mixed them in with sunflower seeds and he doesn't know the difference.  So that's pretty awesome.  I think I will also mix in some raisins and that will be a good little snack.  Or heck, even a side dish at dinner.

And he tried pineapple, and liked it.  I'm not surprised that he liked it--he loves fruit, more surprised that he has refused to try it up until now.

Then I found a brand of crescent rolls that didn't contain cottonseed oil!  They are by the Immaculate Baking Company, which also makes delicious premade cookies--my favorite is the molasses gingersnap ones.  I don't know if these crescent rolls contain any corn because I do not have a package on hand.  We won't worry about that right now.

I've been doing a ton of baking.  Some of my successes have been pumpkin muffins, pumpkin oatmeal cookies, wowbutter oatmeal cookies, molasses raisin muffins, zucchini muffins and gingersnaps.  I even found a good boxed cake mix at Whole Foods that didn't need or contain eggs, and we had some yummy cupcakes for Rocket Man's birthday.  (I have pictures of all of this lovely, delicious fare, but I left my camera at the beach....grrr)

While we have all agreed that the gingersnaps are by far, the most popular thing I've made, I have to say the molasses raisin muffins won the prize for equal deliciousness and healthiness.  I linked to the original recipe above, but I will share it here because I made a number of modifications.

2 cups plain yogurt (great, because Bubble Boy doesn't eat any dairy other than cheese!)
1 single serve cup of unsweetened, organic applesauce (instead of 1 egg)
1/2 cup brown sugar (I added this because there was no sugar in the recipe...1/4 cup would probably have worked too)
1/3 cup molasses
1/2 cup raisins (I decreased by half.  1 cup of raisins seemed a bit like overkill)
1/2 cup wheat germ
1 cup quick cooking oats
3 tablespoons melted butter
1 1/2 cups whole wheat flour
1 1/4 tsp bakingsoda
1 tsp cinnamon
1/2 tsp ground ginger
1/4 tsp ground cloves
1/2 tsp salt

(follow the prep and baking instructions on the site I linked to)

Don't be too impressed.  I've had my share of flops too.  Pumpkin french toast was a major flop with the kids, and I cannot seem to make a decent granola bar to save my life.  I think my trouble there was that I kept substituting apple sauce for certain ingredients and it turns out cake-y.

So there you have it.  I've been a frustrated, discouraged, baking fool, who sends any extra baked goods that need to be eaten to my husband's office.  As it turns out, those rocket scientists will eat just about anything.  Even cookies made with fake peanut butter and tofu.