Food Allergy Experience

Nuts on a Plane

Before my Little Guy was diagnosed with multiple severe food allergies, I had no idea how very, very, very (can I add another very?) controversial the topic of nuts on a plane is. Now that I’ve been thrown into the world of food allergies, I’ve learned there are some people who are absolutely certain they will die without the package of nuts while on a plane. Ok, I’m being a bit sarcastic and over dramatic. But seriously, people read some of the comments on the bottom of  articles. You’ll see that people are adamant nuts continue to be served.

But don’t get me wrong the anti-nut people can be just as frustrating to me. Both sides have drawn a line in the sand and absolutely with no uncertainty will give. They will not cross over that line and offer peace. Or to say, we could work together. There’s usually a round of name calling and high emotions for both sides.

Then you factor in the airline’s opinion. They seem to care but don’t feel there’s much they can do. They’ve drawn their own line in the sand that says, “we care, but not enough to make the other side mad”. The flight attendants don’t have time to monitor what people eat. They have no way to guarantee the seats, tables, or blankets are clean (which I believe everyone should be grossed out by that….just sayin’).

I personally believe some the issue is we’ve equated flying to peanuts. So much are the two now connected, that many can’t imagine they are two separate things. You can be sitting on a plane and flying without nuts. And you can be sitting on a plane with nuts but not flying. Just because you’re eating nuts, does not mean you’re flying. You could be sitting on your couch. You see it is possible. The two don’t have to be connected. And until we disconnect peanuts from flying, we will have people on both sides of the sand line.

I also believe part of the issue is that we don’t want our rights taken away. We, in general, feel entitled to have what we want when we want it. No one else should ever ask anyone to give up any of their rights. Not even if that action cause someone (often time a child but not always) to die a very scary death.

I also think the anti-nut on planes people can be, well, snotty about it. It doesn’t help to call people uneducated or killers. Even if you think it, you should be kind about your redirection. I get it, I have a kid with severe life threatening allergies. I get it. My “mama bear” instincts come out. I want to shout out loud my child’s life is worth more than your 2.00 package of nuts. But, really it doesn’t get us anywhere. And it doesn’t help with the education of the masses who strongly feel nuts are a necessity of life.

I do believe eventually we’ll see nuts removed from flights. And all of this upheaval will be a distant memory. We’ll all vaguely remember when eating nuts on a plan was an option.

But until then, can’t we have some good conversation on how to keep everyone safe? I mean, after all, isn’t that the real concern? And if it isn’t, it should be. We should have some compassion for others. We should understand our actions (in this case eating peanuts on a plane) could negatively impact someone else. And we should care. Because if we don’t, I’m afraid of where our world is going.

First Day of Preschool

Yesterday was the first day of preschool. We all survived. Heck, I even survived without tears! I think the no-tears was mostly because my husband does the drop-off at daycare instead of me dropping him off somewhere completely new. Irregardless of the reason, I made it without tears! Kindergarten, will be whole a new ball game. My goal this week is to have him have no idea how anxious I am. Because I don’t want my anxiety to result in his school anxiety.

A food allergy kid has a few more things to get ready prior to school than the average kid. Everyone has the school shopping list, but we had a few extra’s to take care of.

The Food Allergy Kid’s Back to School Check-list

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School Supplies

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Epi-Pen Bag

Action Plans Dr. signed and approved- In our case we have both food allergies and asthma

Food Plan discussed with teacher

Since his preschool is inside his daycare, most of these extra arrangements were easily discussed and arranged at pick-up or drop-off. It took about 15 minutes to discuss the plan for the epi-pen and realization that I needed a little baggie to put it in inside his backpack. We also discussed where to put his afternoon snack to make sure it made it to the preschool classroom. Overall, figuring out the logistics wasn’t too hard.

But, figuring out how to be comfortable with someone new caring for my little guy. To know that even though there will be new kids to teach and direct, she could keep him safe. That really is the hard part for this mamma. It’s the trusting a complete stranger with my child’s life. That’s hard.

On a positive note, I think this little guy was ready for preschool! He loved his first day and I’m sure he’ll love it again today.

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A Year of Growth

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I knew this day would come. We’re preparing for preschool for my allergic child. It’s a scary thought. I’m trusting a complete stranger in the care of a child where literally, one mistake could kill him. I’m not being over dramatic. It’s scary. It’s real.

This last year I’ve seen my little one grow and develop. He’s mastered counting, heck today he counted to 29. He’s very chatty and talks using some amazing vocabulary. He now even dresses himself. Yes, this year I’ve seen many of the typical development of a now 4 year-old.

What isn’t typical in his development? He asks if his food is safe for him to eat. And even more than that, he specifically asks about his specific allergies (milk, wheat, eggs, nuts). He knows if any of that is in his food, he doesn’t eat it. If he ever wonders if he can eat it, he asks. It’s pretty amazing that he knows his limits and has accepted them just as one would accept they shouldn’t eat grass.

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All of this helps me feel more comfortable sending him to preschool. He not only is ready academically but, he’s as ready as he can be with regards to his unique situation. And really, that’s a relief. The adults have to protect him, but it’s nice to see he’s taking an active role in being safe.

Trix is for Kids

I get really excited when I find a cereal or something that’s “normal” that is safe for my kiddo. So often I feel like I’ve read every single label in the grocery. Every. Single. One. And then, something amazing will happen. I will find something that either wasn’t safe for him before or I just didn’t realize was safe for him. It’s not uncommon for companies to change their recipes. It’s great when it works in our favor and something new becomes safe. It really sucks when it goes the opposite way, something that once was safe and then becomes unsafe.

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This weekend, I found this jackpot! Trix is not just for other kids, it’s now for mine. I can’t say if it’s always been safe, but I can say that Monday morning my little guy ate his first bowel of Trix cereal.

I know cereal isn’t the healthiest of foods. But, honestly, we eat so healthy in this house that I don’t stress too much over my kids eating some cold cereal.

Have you found a food recently that was a pleasant surprise?

An allergic Child’s Week of Suppers (25)

DSCF2304Hey there! Gosh I’ve been so busy. This summer has been an amazing one with lots of activities and less worrying over food allergies. I think my food allergy stress has decreased because of his decreasing numbers, lack of recent reactions, and he’s beginning to understand what he can’t  and can eat. It’s so nice to be here. I use to dream of this day but didn’t really think it would come. Don’t get me wrong, I still worry and stress. It’s just a bit less.

We are preparing for preschool so I’m sure there’ll be challenges with it. And I know I’ll write a bit about it later.

Here is my menu for this week. I’m trying out a few more recipes this week so hopefully I’ll get a chance to post those.

Monday: BBQ Chicken & French Fries

Tuesday: Tacos

Wednesday: Turkey Cutlets, Potatoes, Broccoli

Thursday: Pasta with meat sauce

Friday: Cola Pork Roast, Baked Potato, Mixed Veggies

Saturday:  Lunch: Chicken Salad, Chips, Grapes    Supper: Pineapple Chicken

Sunday:   Lunch: Leftovers   Supper: Grill-out Brats & hotdogs, 3 Bean Salad, Chips

What’s on your menu this week? Are you trying anything new? I’d love to hear from you.

 

Pizza, Pizza (Gluten-Free, Vegan)

Do you remember the Little Cesar Pizza commercials….Pizza, pizza. I attached a link to YouTube in case you’re not familiar with the “pizza, pizza”. It really doesn’t have much of anything to do with this post, except that it explains my title. Although, I’m quite certain that there’s something wrong with me spending so long to explain such a simple thing such as my title. I’m certain there is some sort of rule on writing or list of things not to do when blogging which addresses this. IF there’s not there should be. And I’ve now completely digressed from my topic.

Pizza (pizza, pizza) is a household favorite in many homes. It is a favorite of many kids. As an adult, it is one of my favorite foods. I honestly could eat pizza several nights a week without complaining. One of the best things about pizza is it’s diversity. You can put almost  anything on a pizza. Pizza toppings can vary from the traditional pepperoni to the less common of hotdogs or potato and onions.

I will admit, pizza (pizza, pizza) was something I was certain my little guy would not be able to enjoy. Afterall, the main ingredients to any pizza is wheat, cheese and egg. He was allergic to all three of those. Since then I’ve experimented with different options. I used Energ-G English Muffins, tomato past with Italian seasoning, pepperoni, and Daiya cheese. And this works well and it’s easy to send to daycare because they can microwave it to melt the cheese. But it’s not perfect and if you’ve had a regular pizza, there’s something lacking.

I’ve tried a couple of times to make homemade pizza crusts. But have failed. Well, that was until most recently. I finally found a gluten-free pizza crust that tastes good and works without eggs. I can’t really take credit for it as I took it off the Bisquick gluten-free flour box.

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Vegan, Gluten-free Pizza Crust

Ingredients:

1 1/3 cups Bisquick Gluten free mix

1/2 tsp Italian seasoning or dried basil

1/2 cup Water

1/3 cup Oil

Egg Replacer for 2 Eggs

Directions:

Heat oven to 425. Stir together ingredients until well combined. Spread onto the pan. I made individual pizzas so I divided the crust into four  parts. Bake 15 mins. Then apply pizza toppings.

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Our pizzas were like thin crust pizzas. Typically I’m not a huge fan of thin crust, but it really was pretty good. My kids both loved the pizza. This is a crust I will make again.

As for the flour itself, I’ve also tried the pancake recipe and we liked that. I plan to try the Strawberry shortcake and the biscuits. When I do I’ll let you know how they turn out.

 

The good and the bad

Yesterday was my Little Guy’s food challenge for milk. It had been a crazy week leading up to the challenge with dance recital prep and softball practice starting. That was kind-of a blessing because I didn’t have much time to think about or worry about his challenge. I usually get so pre-occupied with it as it approaches. This food challenge was potentially especially nerve-racking due he’s been anaphylactic to milk in the past.

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The night before the challenge I made 11 muffins with 1/2 cup of whole milk for the appointment. We got up quickly and rushed out the door, two muffins in hand. He was excited to eat the muffin and couldn’t wait to get to the allergist. He does love his food. The appointment start as all doctor’s appointments started with a weight and a review of his medications.

Then I was given the consent. The simple white piece of paper makes everything seem real. The risks are laid out there for me to see. It reminds me that this could be very dangerous. I’m reminded at the importance of my choices for him. This simple piece of paper reminds me that I am 100% making a risky choice for my darling boy. I nervously signed that line feeling relief that we are trying this new food in the security of the doctor’s office.

The actual challenge started off really slow. A small crumb on his lip, then a small crumb of a bite, a slightly larger bite, and so on. Each step was 15 mins after the one before it. With each step down, I relaxed a bit. I thought, maybe we’ll be ok. Maybe we’ll start eating dairy again. No reaction was noted all the way up to the last big bite. However, right before, we noticed a small red/puffy area on his upper lip. The doctor came in and looked over. His belly, back, and extremities looked good. So, she said lets wipe his face off and give him the last big bite. If he manages to have no further reaction after 60 minutes, we’d be cleared.

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We were amazed that even by the time the 6o minutes passed his spot had essentially disappeared. And that was without treatment! We all celebrated a victory and we received our instructions. One muffin once a day for a week and if he does well we’d increase the baked milk from 1/2 a cup.  We left with me on cloud 9. I was so excited I announced on Facebook that we passed the food challenge.

Well, the posting on Facebook should’ve been my warning. I shouldn’t have done it. My husband got home about an hour later and he and the Little Guy ate lunch. And sure enough, about the time he was going to daycare- 2 hours after we left the doctor’s office, he’d developed a red rash and became very hot. He had some hives on his abdomen and under his armpits.

After a couple of conversations with the on-call doctor (the allergist office closes at noon on Wednesday), we had a treatment plan in place and a decision to make. Do we risk feeding him a 1/4 of a muffin for a week with the hope of increasing his tolerance to the milk or hold-off until after a retest of his labs. Each one had benefits and negatives. The safest choice would be to hold off until his numbers drop lower.

Well, the decision was a hard one. I really felt like the fact he didn’t react right away and wasn’t anaphylactic he had a pretty good chance of eating the quarter of a muffin. And if he could eat it, then maybe building up a tolerance was possible. We’d only be giving him a 1/4 of a muffin or a 1/4 o of an 11th of a 1/2 of a cup of milk (did I lose you there?), he’d have such a small amount of the milk, that he’d be ok.

So, the question really became, did the risk outweigh the benefit? We decided that the risk was relatively low and his benefit was high. So, I called daycare and arranged to have him closely monitored. We are very lucky to have such a wonderful daycare teacher. She truly loves my Little Guy. I called several times today to check on him and he did fine. Tomorrow is day 2. We will try again and we are praying that this week goes by without incident. And we will see what next week brings.

The Results Are In!

I keep track of this running labs for myself mostly. I know several people who read this like to see how his numbers are doing, so I put them here. Also by posting it here, it helps me to see how they’ve come along.

 

Allergen       Original       Test 2       Test 3       Test 4            Test 5     Test 6       Class (1-6)

Cat                  10.9               22.4          70.7           67.4               17.9          45.2             4

Crab               ——               43              60              <0.35                                                        Neg

Dog                 17.4               44.6           55.9            52.1             24.1           20.1            4

Egg                 >100              20.3          34.8            24.0                13.9        10.9            3

Milk                41.2                70.8          82.1            48.4            17.8            9.87           3

Peanut          76.1                36.6           39.3            23.4             12.7            10.1           3

Soy                 14.2                 7.32           6.94           3.56                                  NA             NA

Wheat            33.9                  49.1          48.7           24.9            8.83          9.20            3

Mango           ——-              0. 67          0.91            0.35                                                       Neg

Nut Allergy Results

Allergen        Original        Test 2         Class 0-6

Almond         1.16                  0.78            2

Brazil Nut     0.51                 <0.35         0

Cashew                                     <0.35        0

Hazelnut       1.15                   0.67          1

Pecan             <0.35               <0.35       0

Pine Nuts     <0.35              <0.35        0

Pistachio     0.83                  0.52           1

Walnut          <0.35               <0.35        0

Chestnut       0.49                 0.38           1

Macadamia                             0.24          1

So, what do these numbers mean, you may be asking. In most cases, his numbers have improved. The largest drop is his Milk, dropping by almost 8 points. That’s great! This followed by dog which dropped by 4 points and egg which dropped by 3 points. Peanut also made a good drop. Although Hazelnut only dropped by around 0.5 which doesn’t seem like much, it actually dropped by 1/2. Several of the tree nuts have dropped too. Even the smallest drops are exciting for me as age 5 is quickly approaching. (Age 5 is a magic number as usually where they are at age 5 is where they’ll stay.)

We did have some increases. Wheat went up to 9.20 which is quite a bit lower than our original number of 33. Cat went up significantly and remains higher than the original. I marked Soy as NA because he safely eats it and it wasn’t tested.

As I mentioned in an earlier post, we are able to do a food challenge for both Milk and Egg. Since the Milk is the lowest, we have that scheduled for next month. I was pretty relieved that I didn’t have to wait 3 months like last time. I’m also pretty nervous. He has been anaphylactic to milk before. Now, granted that was when he’s numbers were much higher and it was uncooked glass of milk. But, still, it makes me nervous.

Some of you may remember that we did attempt an egg allergy in February. He failed it. He had developed a rash around his lips and (as he described it) salty taste in his mouth. We had to stop it and cancel the rest of the appointments. We cancel the appointments because his other results were higher than his egg and she didn’t want him to have a bad reaction and then he become scared of the tests. I felt very disappointed but the allergist said there was a lot of hope. He’s reaction was localized and wasn’t severe. She said that this was a good sign and felt he’d do better at the next challenge. So, we scheduled a lab recheck and here we are.

So we are hopeful. I honestly was hoping for much higher drops. Since they remain a 3 out of 6, there is a good chance he won’t pass. Usually they have to be a 2 or lower. We were quite successful with Soy which was a 3 at the time of the challenge. So, I do hope this will be the case this time.

It’s been a while….

Hey there! Sorry I’ve been a stranger recently. I think I’ve said this before, but if not, Kindergarten has taken us for quite the loop! My little guy with the allergies is not in kinder, but his big sister is. And anyone with more than one child knows, what impacts one child, impacts the other family members.

Since, I’ve been absolutely horrible at updating with the mundane stuff, I thought I’d better stop in for the more important update. This one is good news, mostly anyways.

Last week the Little Guy had his labs rechecked. We did do a failed food challenge earlier this winter for egg. Despite failing the challenge, he’d been ok- no anaphylaxis just slight rash around his lips. Overall all the allergist cancelled the other scheduled challenges but felt quite hopeful we’d have success in the future. Well, now the future is here, and we recheck his labs.

I don’t have the official numbers, they’ll be mailed to me and I’ll put them in here once I get them. But overall he had a lot of movement down. In fact, mostly movement down. There were a couple of upward moving numbers (boo!) but at least there weren’t many of those. But, since I don’t want to go off my memory, I’ll go more into that later.

The good news is, we will be doing a milk food challenge next month…wait, that’s right, next month! If that goes well, we’ll be adding an egg challenge. From my phone conversation, both the milk and egg remain at a 3 on the scale of 1-6. So, there’s still a decent chance he’ll fail the challenge. However, if he can pass, life will be safer for him and less worrisome for me. This is especially true as age 5 is quickly approaching.

 

Loving the Uneventful

I’m loving that the last couple of months have been uneventful. That’s the funny thing about food allergies, and I would guess any chronic illness, life is absolutely wonderful when nothing eventful has happened. I may be jinxing myself, and I truly hope I’m not, by putting it out here for the world to see.

Prior to food allergies, the uneventful was quite a different thought. It certainly didn’t fill me with joy. In fact, prior to food allergies, I thought the uneventful was boring, I equated it to staying home with no plans. It was a time when we we’re looking for something fun to do.

Now, the uneventful means safety, less stress, and relaxation. We’ve been soaking up all of our uneventfulness with family fun. We’ve traveled a few times back to visit family. We’ve had family board game nights and even played catch in the yard. Yup. This uneventful time has been filled with plenty of fun events!

How do you fill up your uneventful time? I do hope each of you have had a break from food allergies and all the dangers that lurk. I hope you’ve taken time to enjoy the breaks between testing, reactions, and worry. Please share any stories or thoughts. Thanks as always for reading!

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