Food Allergy Awareness Week 2014....and a glimpse into an allergy mom's life.

Mason this past September 2013 at the Houston FARE walk for allergy awareness...posing at the Epi-Pen stand with his own personal epi pen.

If you look at Mason's allergy testing you will see he is allergic to 4 things:

Peanuts

Cow's Milk

Eggs

Soy

However, he can tolerate all things soy (even edamame!!!) He can also tolerate cooked eggs and milk, so we are very lucky in that sense. He can have baked goods as long as they are nut free! Raw milk however will cause him to bust out in hives and vomit. Yuck.

We kicked off Food Allergy Awareness week this year wearing the tshirts we got at last Year's FARE walk.

Wearing his food allergy walk tshirt for preschool to help raise awareness!

Some people have said to me "I don't know how you do it" in reference to Mason's food allergies. I remind them that you don't know how strong you are until you have to be strong. I don't have a choice. I have to be the anti-allergen nazi to keep my kid alive.

When we go to a party I have to keep a super close eye on him...what if someone offers him a piece of candy with nuts in it? Or something with uncooked milk like homemade buttercream frosting or any kind of "dip" (oh the vomit that will ensue!)?

We were home for Christmas this year and were at my cousin's house and the kids were all running around playing and I hear my other cousin say "Mason's not supposed to have peanuts right?" and immediately I felt the blood drain from my face. The way it was worded was as if he was in the act of eating them. I whirled around to discover she was offering all the kids candy out of a bag and he chose a peanut butter cup. She said what triggered her memory about his allergy is his allergy alert bracelet. I don't see my family more than maybe once a year so in reality they have no actual clue about his allergies, and I don't expect them to be his allergy warriors. That's my job. And I almost failed.

What if Theresa hadn't remembered about his allergy, or seen his bracelet, and what if, what if, he opened that peanut butter cup and ate it?? My eyes are welling up as I think about how real the fear is that that could happen.

We've already had one ambulance ride to the ER while visiting home in NY this past September, and I've also used an epi pen on Mason. (You can read about that here.)

On a side note do you know how much an ambulance ride with Kunkel costs? $500. 

An allergy-related trip to the Faxton-St. Luke's ER? $220.

But when you're in a panic because you're fearing for your child's life, money doesn't matter.

You inject that damn epi pen and you call 911.

You just do it. And you remain thankful that your Mom happens to be with you to keep you calm and to follow the ambulance in your car with Aidan while you ride with Mason to keep him calm.

On a daily basis I have to remember/worry about things that normal moms don't. Did I bring the epi pens and the benadryl? I have to turn around and go back if I forget them. Did I bring a Mason-friendly snack, in case the other kids are eating something he can't have?

There was a day we were supposed to meet Brittany at the Zoo, and we got there and as I was loading up the stroller with our stuff I realized I left them home because he had school that morning and they were in his backpack, not my purse. So with a screaming Mason who was pissed we had to leave, we had to get back in the car and head home. 

I have to watch him as he eats in restaurants, because I'm just sitting there waiting for there to be a reaction from some sort of cross-contamination in the kitchen. We can't eat in Asian restaurants because they use lots of peanuts in their cooking, and the risk of cross-contamination is WAY too great. 

He can't have cake at Birthday Parties because the frosting is either buttercream or the "whipped" dairy frosting, and that will make him vomit. Thanks to a tip from a friend from PA I can buy him the canned frosting to use on cakes because believe it or not, most of them contain NO MILK. I shudder to think about what's actually in it then. I always used to make my own frosting from my great Aunt Edna's recipe....but hey if Mason can't have it...canned garbage it is.

We went out to a concert Friday night and the boys were with people we really trust (otherwise this allergy mama wouldn't have left them),  yet I was checking my phone every 5 minutes to make sure I didn't have any messages from home.

Everyone who gets left with my kid gets a lesson on epi-pens, signs of anaphylaxis, and what foods are prohibited. It's nice when someone watches them in my own home because we are a nut-free home. I don't have to worry about peanut butter cups or granola bars with nuts being accidentally ingested. Ok, so we have one hidden jar of Peanut Butter on the top shelf of the pantry for nights when the boys are sleeping and Ry and I have to give in and have a taste....but other than that. No nuts.

For his second day at preschool during the week, he represented with his "It only takes one bite", "Team Mase Face" shirt that I created for the allergy walk last september. And his boots. He always wears his boots. a True Texan. ;)

I am that lady scouring and double/triple/quadruple checking ingredient lists on foods at the grocery store. Not because I want to, but because I'm trying to ensure that the label doesn't say something like "May contain peanuts/tree nuts, processed on the same equipment that processes peanuts/peanut butter, may contain traces of nuts".

And candy bars? Forget it. Way too risky. Sorry kid, no chocolate bunny for you at Easter!

Do you know how many brands of pretzels contain the warning "processed on shared equipment that also processes peanut butter"? Tons. Because peanut-butter filled pretzels are a thing, and that's why something as simple as pretzels, that YOU may not think would be related to a peanut allergy can affect my shopping experience.

My days are filled with worry and anxiety. I fear the day he goes to Kindergarten and he is out of my sight. Yes, he goes to preschool now, but it's a small class, and they never leave the room they're in. What happens when he's in Kindergarten with hundreds of other kids and walking in hallways and eating lunch in a large cafeteria where an adult who personally knows Mason can't say "hey Mason don't eat that!". Little kids are sneaky, I worry he'll be offered a peanut-laden snack on the playground or the school bus where he can't be helped. I lose sleep over it. So many kids die accidentally like that. Most days I hide it pretty well, but rest assured I am constantly worried and full of anxiety about his allergy. It doesn't end. I think about worst-case scenarios all day long. I am a helicopter mom and I am forced to be. If I don't look out for him, who will?

If you give a Mason some milk.....

Tonight at dinner I accidentally switched the boys drink cups. This means I gave Aidan rice milk and Mason got Aidan's cows milk, which he is allergic to. 

It was brought to my attention mere minutes after the mixup when Aidan told me his milk tasted funny and I quickly noted that the color of their cups were wrong. Aidan should have had the blue cup but the blue cup was in front of Mason. 

Damn it. 

I figured he couldn't have drank all that much since Aidan was pretty quick to notice my mistake. 

However, as Mason finished eating he told me his belly hurt and I knew he was going to throw up. He sat on the couch (yes, yes Uncle Adam I knew he was going to puke yet I put him on the couch……) holding his belly and I decided to get him into some comfy jammie's instead, and like a pro I made sure I picked a pair that buttoned down the front so that when he puked (I knew it was inevitable), I wouldn't have to pull puke covered jammie's up over his face and head. 

15 minutes later he was vomiting on the couch. I cleaned him up and got him in the bath and then noticed he had hives all over one of his ankles. Then I notice he had hives spreading across his chest.  

Unlike the ER trip in September, this time I knew he had consumed milk so I gave him benadryl which cleared up the hives almost instantly, and sent him off to play before bed.

He was and is absolutely fine from the incident. Mommy, however, felt like absolute shit considering I'm the one who switched the little Ikea cups at dinner :/
Apparently milk was in the sun chips that made him vomit and covered his mouth with hives and blisters in Sept, but since I didn't know it was milk I was afraid it was peanuts, and that's why I was so quick to whip out the epi pen.
This time I'm glad it was only milk and it was only hives and vomiting…and it didn't hurt that Dr Daddy was home when it all happened either ;)

Mason's nasty allergy reaction....the scariest day of my life so far.

I figured some of you may be curious as to what happened to Mason on Sunday, so instead of telling everyone who asks individually, I figured I would write a post about it.

Sunday we were at a friend's house and I let Mason have some French Onion Sunchips. He is technically allergic to milk, but I have been told by the allergist that if the milk is listed as the 4th ingredient or lower that he can have it. His reaction to milk and eggs is eczema, not anaphylaxis, so he says he needs to continue to be exposed to those allergens so that he does NOT develop an anaphylactic reaction to them.

So the chips had some milk at the bottom of the ingredient list, but I let him have them. He was sitting on my lap eating them. Shortly after he started rubbing his palms together like they were itching. When I flipped them over to inspect the palms I saw they were covered in hives. Then I turned his face to me and saw he had hives all over his chin, and a giant blister on his lip! I panicked slightly but tried to keep my cool. I gave him benadryl and continued to monitor him. I was quite concerned because the hives he had were freakishly similar to the ones he gets when he touches peanuts. I was wondering if the bag was contaminated with nuts or something. I was also thinking about that poor 13 yr old girl who died recently after eating peanut butter tainted rice krispies treats. She didn't have a reaction immediately so her parents gave her Benadryl and monitored her. By the time she had a full blown reaction 20 minutes later both her epi pens couldn't save her and she died. THIS is what is going through my head right now....but I'm trying not to panic.

The hives were gone in minutes and we headed outside to watch a parade, then walked a few blocks to a feast (which was the reason we were down in Utica that morning).

We met up with Joe & Erika and their 2 munchkins at the feast and all Mason wanted was to be held, so I obliged. He fell asleep almost instantly on my shoulder, which is odd for him....even with Benadryl.

 I placed him back in the stroller to sleep and about 15 minutes later heard him crying. he had woken up vomiting.

I wasted no time, didn't get him out of the stroller, didn't comfort him...I jabbed him with the epi pen, while shaking like a leaf and freaking out inside. I didn't hesitate. I didn't care if I was overreacting, I just did what I've been told to do when he has a bad reaction like that.

 I didn't want to wait, I didn't want to run the risk that I had already waited too long to react.

At this point I'm panicking and shaking like crazy. I strip him out of his vomit covered clothes and hold him. Poor Erika was wonderful and was handing me wipes and trying to clean puke off of us and cleaning it out of my stroller. I can't thank her enough for her calmness in my moment of sheer panic. My checklist starts running through my head: 

"1-Administer epinepherine
2- Call 911".

Do I call 911 or just take him to the ER myself? Joe calmly assures me I need to take him to be checked out and says he looks very pale, so my Mom and I leave the festival as fast as we can and walk a few blocks back to my car. While in the car on the way to the ER he starts acting super groggy and I can't tell if he's losing consciousness or is just exhausted from the ordeal and the Epi. At that point I pulled over at a Nice N Easy and called 911.

First time ever in my life. 

They sent some first responders from the Utica Fire Department and by that time Mason was acting normal and they said that even though he was acting fine now that it could change and he needed to be seen in the ER. Instead of running the risk that he start reacting poorly while in my car, I had them call an ambulance and we rode in that to the ER while Mom drove Aidan in my car and followed behind us.

We were promptly seen in the ER (funny how kids +food allergies+ epi pen used jumps you up in line), where Mason's stats were normal and he was talking to anyone who would give him the time of day. A volunteer even came and gave us a bag of little goodies to play with, which had a lollipop too. He was in heaven.

He was extremely well-behaved and did everything the Dr asked him to (such as "open your mouth and say ah"). By this time all 4 Grandparents were in the ER waiting room with Aidan, who was apparently behaving as well, anxiously waiting for us to be discharged.

He seemed OK, and the ER Dr said there was just something about the milk ingredients that didn't react well with him.  He also said that most times in the powdered flavoring for chips that the milk is often uncooked and unpasteurized.....Mason can handle cooked milk products but not raw. (He had pulled up the ingredient list from the internet and gone over it before coming to talk to us.) He gave him a few days of oral steroids to take and wrote me a new script for epi pens before we left.

Thankfully this event had a happy ending, but I tell you what...now I am that super crazy anal allergy mom when it comes to milk. I was never worried about milk before because all it did was flare his eczema, which was treatable. Now I have to seriously watch what I give him because unless I know it's really cooked, it could cause a much more serious reaction!!! 

I was also told by the paramedics and the ER Dr that they were impressed that I had actually used teh epi pen because apparently most people wouldn't do it. 

I was terrified my child may die. I HAD to use the epi pen.

So thankful Stacy invited me over that night for a stiff drink. I sure needed a friend to cry to that night and a bottle of wine later when she told me I saved my baby's life using that epi pen, I knew I was going to get through it....and be stronger and more ready for it the next time.