Food Allergy Experience

Deep in the Trenches

This morning was a rough one in our house. My Little Guy had a field trip so I needed to pack him a sack lunch. He was cranky and had a few meltdowns. I ended up making him two breakfasts of which he ate one. He cried through getting his teeth brushed and getting dressed. It was one of those mornings I wished I was a stay at home, homeschooling mom. That way he could sleep until he woke-up. I know he was tired, he’d had soccer practice the night before which demanded a bath due to being dirty and sweaty. Bed time was pushed back.

With all of that going on, I forgot to put together an AM and PM snack for him. I forgot to fill out the daycare slip.

It was one of those mornings. Everyone whose been a parent longer than a few days have had those days. The days that people tell you about but you can wrap you’re mind around until you’ve experienced. Those days where nothing, and I mean nothing, goes right. Those days help validate the statement: Parenting is hard.

Those days are the days as an allergic child’s parent that you don’t have the luxury of having. One bad day with one bad move can result in your child getting sick and spending time in the ER. One day of forgetting to pack his snack now has me re-arranging my work schedule to find a time to drive him his snack. You must be at the top of your game 100% of the time.  (This of course is completely impossible to achieve. You will make mistakes and have bad days.)

Don’t get me wrong, I’m not saying we’re Supermoms. Sadly, I don’t have any super powers unless you count amazing organizational skills or the power to stay calm. I’m not saying we deserve a special trophy for dealing with day-to-day life. (Although I wouldn’t turn down a coffee and doughnut). I’m certainly not saying I’m a better mom than anyone else or my trenches are deeper than yours. (Just for the record, I hate the let’s compare wounds/trenches game because no one comes out the winner.)

I am saying, that we don’t have the luxury of having a bad day or a bad morning. We don’t have the luxury of saying, I forgot his snack but it’s OK he’ll eat what everyone else is. I am saying life is hard and stressful in this trench.

But the joy of seeing my happy, healthy little guy. My little guy whose not itching or red and blotchy but happily playing without a care in the world. That makes me extremely happy. That tells me that all those cruddy, stressful, bad mornings and days are 100% worth it.

So go, hug your babies. Remind them that you love them. And remember, some days you’re deep in the trenches and life is tough, but you’re baby’s happiness is the payment that will always pay back 110% of effort you put in.

And the Winner is….

Its been a crazy week! I did receive a copy of all my Little Guy’s labs but I’ve not had a chance to type it. Even though I’m don’t have time to type all the results up, I did want to give a quick little update.

Max had his allergist appointment last week. It was a chaotic week and I completely went to the appointment on the wrong day. Yeah, I was a week early. Super embarrassed and ready to slowly with my head down, walk out of the office, the nurse stopped me. I was in luck, there had been a cancellation. On top of that, I realized I forgot our insurance card. The lab, despite having been there multiple times, won’t draw any blood without the card. I asked the nurse for one more favor, a copy of the insurance card. I must say, I said a prayer of thankfulness that everything worked out OK.

Despite all of the stress, his appointment went wonderfully. The Dr was very impressed with his progress. She commented about how very different he looked from when she first saw him. We talked briefly about possibly stopping his daily Zyrtec and will probably do this in June after the pollen counts drop some. She ordered his lab draws and off we went.

My Little Guy handles lab draws amazingly. He’s always sat still and watched his blood drain from his body. This draw was another example how amazing he is and how grown-up he’s getting. He climbed up in the chair and asked to sit alone. The lab tech was cautious before she started and impressed when she finished.

On to what I imagine most of you are really reading this for, he’s results. I quick brief over view. His wheat went up again. I’m growing to accept the fact that may not go away. His nuts were all over the board, some going up and some going down. The Egg went up but really doesn’t matter much as he’s now eating that safely. The best news is, his milk. That dropped almost two points. This is awesome because this means he can do a food challenge. In about 6 weeks, we’ll be doing the baked milk challenge.

And so the winner this time around is milk. And of course My Little Guy. Here’s to hoping the next few weeks go by quickly and he passes his baked milk challenge so we can eventually move on to Ice Cream therapy. :)

The Wonderful Egg

One of these days, I’ll stop talking about how absolutely wonderful eggs are to have back in our diet! It’s really been a wonderful thing. It’s nice to have eggs in the house for my salads at lunch and pancakes are a bit more fluffy with eggs.

We’ve had a few struggles tho. Luckily Max loves scrambled eggs so that’s pretty easy to get him to eat. Not a big fan of what I call “dunkable” eggs (fried egg where the yoke is a bit runny). And not a big fan of Deviled eggs. But scrambled, he’ll take scrambled eggs anyday or anytime. He’ll take them in a box or with a fox. He’ll take them on a train or in the rain. He likes scrambled eggs. (And yes, I am amusing myself….).

The challenging part, the part I’m still working on, is making sure he gets some egg everyday. This includes baked. That’s been harder than I expected. It really forces me to make a menu and stick to it. If he eats a muffin in the morning than I am good for the day. Otherwise our suppers have to have some egg in it (meatloaf, fried rice, etc). It’s not the hardest thing to do, it just requires organization, good planning and less spontaneous meals. Not that we were ever really spontaneous before but he gets fewer choices for breakfast.

I’m happy to have some great new choices for him. I’ll make another entry soon with some of the great new items he’s tried. This morning he had a cinnamon roll for the first time ever! And he’s enjoyed a bagel recently for the first time.

Life is good here with the eggs! I’ll post some new products soon!

And the Egg Verdict is…..

It became official today. My Little Guy has outgrown his egg allergy. I’m so very happy! We have a few new rules to live by now. But even with the new rules, life will be amazing! And this mama will feel so much more secure in his safety!

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Our new rules regarding the Little Guy’s egg:

1) everyday he must eat something with egg

2) once a week he must eat an actual egg

Yup that’s it. Two rules to add to our list of dietary management. But life is getting easier. My only problem is I now need recipes with eggs in them.

So, if you got an amazing recipe that uses eggs, please share!

Egg Challenge: Update

It’s hard to believe we’ve been working on the egg challenge since December 1st! As previous posts have stated, we started off pretty slowly introducing egg back into his diet.

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Here’s an overview of our progress: Week 1: Baked egg challenge in the office: 1 egg to 24 muffins. Then one of those muffins daily x7 days

Week 2: 1 egg to 12 muffins daily x7 days

Week 3: 2 eggs to 12 muffins daily x7 days

Week 4: 3 eggs to 12 muffins (for us cupcakes) x7 days

Week 5-6: pancakes daily

Week 6-7: French Toast

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We started French Toast last Saturday and the Little Guy has been doing an amazing job. He is now up to 3 pieces of French Toast daily. It is with his gluten free bread which is smaller than regular bread. I would guess it equals about 2 slices of regular bread to his 3 slices.

I do have a dilemma. He is to eat French Toast 1-2 weeks before moving to scrambled eggs (yes that’s our next step!). I want to start scrambled egg on a weekend instead of during the week just in case. This way I’ll be here to watch him instead of relying on daycare to watch him. I could technically start scrambled egg on this Saturday. He would have had French Toast for 7 days. Or if I wait, it will be a full two-weeks of French Toast. The problem is, he’s been very cooperative with our reintroduction and I know having the same food for two weeks can get old. I don’t want him to decide he doesn’t want to eat his breakfast.

It has been good buying eggs again and I’m amazed on how many eggs we’re going through weekly. I’ve also looked through the grocery aisles excited for the new things the Little Guy will be able to eat soon. I’m beginning to get very excited for him.

The wonderful world of eggs (challenge)

As many of you know, we’ve started adding egg back into our diet. The Little Guy had the food challenge almost 4 weeks ago and is now on 3 eggs baked in 12. The first 3 weeks we did muffins but this week I made cupcakes. He was getting super tired of eating muffins and I hoped cupcakes would help him want to eat it. But we’re still struggling a bit. I think he’s just tired of eating basically the same thing (cupcakes are basically sweetened muffins with frosting on top…) every day. I’m hopeful that next week we’ll be able to move out of baked goods.

The last 3 weeks have been incredible for this food challenge. We’ve had a few before, some very successful and some not so much. In the past I’d approach these challenges super excited. That was, of course, until he stopped passing them. Once we had a couple failed attempts, I became more anxious about it. More worried.

This egg challenge is the furthest we’ve gone in a challenge like it. We’ve completed a soy challenge and shellfish. But both were much more straightforward, he passed we could eat it. This challenge, however, has had more steps. I thought I’d share the steps with you. At least the steps, we’ve completed so far.

Week 1: Baked egg challenge in the office: 1 egg to 24 muffins. Then one of those muffins daily x7 days

Week 2: 1 egg to 12 muffins daily x7 days

Week 3: 2 eggs to 12 muffins daily x7 days

Week 4: 3 eggs to 12 muffins (for us cupcakes) x7 days

I’ll call the allergist back on Friday to get further instructions. So far, he’s not had any reaction to the eggs. I’m really hoping we’ll be out of the baked muffin/cupcake/bread type items.

The road so far…

We’ve come a long way on this journey. As a baby, my little guy was an itchy mess who hardly slept through the night. He’d find a way to itch no matter what we did. We covered his little hands with socks and he’d still find a way to rub his face and little body. When we held him, he’d rub is face and chin against our clothes. He had a little wiggle dance he’d do when he was laying. That squirmy dance paired with his gloved hands made him look like an inch worm wiggling his way around.

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His itchiness impacted our lives. We didn’t sleep well because he didn’t sleep well. We worried because his skin would be missing and scabbed over. We worried because this behavior isn’t normal for a baby. All new parents or parents of a baby feel stressed and feel the lack of sleep. But with our undiagnosed food allergic baby, life was beyond words. I worried and stressed and felt helpless to help him. It broke my heart to see him so miserable and not be able to fix it.

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At six months, he was hospitalized with an abscess and the hospitalist recognized an allergic child almost immediately. She referred us to his allergist. I’ve learned since we were very lucky as many parents are not allowed to test their kiddos until after 1 and some not until after 2 years! That seems appalling to me given our experience. But I digress.

Knowing was a relief and a battle all of its own. It felt good to put a name, a label on what was happening to him. As a nurse, I understood the life-threatening possibilities. This brought on more fear and anxiety. Especially as his skin seemed to improve but then break-out randomly without knowing a cause. It was struggle emotionally, especially in the beginning. Food was a comfort but yet deadly to him. Trying to keep him safe and keep relationships became a challenge. No one understood what I was going through. No one wanted to help me. I felt completely alone. I felt that people nodded their heads one second and would just as easily shove prohibited food in his mouth the next. My husband and I were two parents against the world.

I could write about the stress and how it affected our marriage, but I feel that could be a post in and of itself. I will say, that even a rock solid marriage like my husband’s and mine felt the waves of stress. It was inevitable we’d feel it pulling and tugging at us. Luckily, we are strongly bounded and this struggle has, in my opinion, strengthened our bound.

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Then came the food challenges. Each one brought new hope and fear. A couple brought bitter disappointment tears.

Tears shed could also be a post of its own. I’m not a crier. I don’t tear up often and few have seen me sob. Too many days during this whole thing, I’ve spent time behind closed doors with tears rolling down my cheek. I’m certain many people in life will be surprised to read that last statement. But yes, I’ve cried over food allergies enough that my body shook. I am strong and his food allergies have made me stronger. I’ve accepted the fact that sometimes I have to cry and cry hard.

Now, in the present, he passed his second food challenge. We are now adding baked eggs into his diet. He is on week two of muffin therapy. Thankfully he loves muffins and doesn’t mind eating them daily for two weeks straight. I’m not sure what next week will be for his daily food but I’m hopeful for something other than muffins. Mostly for my Little Guy’s sake but also because I’d like to bake something different.

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I’m not sure what the future will hold. I’m not sure if he’ll continue to outgrow his other allergies. I’m not even 100% certain we’ll get eggs back despite the muffin therapy. I am sure many parts of the past could be in my future. I do know I feel anxiety when I think about what the future will be.I feel nervous and anxious at the thought of school. And, parts of me still wants to take my family and live in a bubble in Alaska. But running and hiding won’t work for a little boy who wants to live his life. Who deserves to live his life.

Update: allergy testing

I’m very late getting this posted. I do apologize. A few weeks ago the Little Guy went to the allergist. We had a really good visit. He did get his first ever flu shot. They changed the recommendations last year or the year before but we’d never given him one. However, his numbers have been decreasing so we felt it would be safe to do so. He also had his labs checked.

We got his results back and all the labs look promising. They all decreased except his wheat which increased slightly. All of the rest had dropped by almost half in the last year, approximately 1/4 since last spring. We have a food challenge scheduled for baked egg. This time however I’m doing it a bit different. I am baking 1 egg in 24 muffins. During the food challenge he’ll eat 1 muffin and hopefully he’ll pass it this time. I’m hopeful.

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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