Flashback: The Day Josie Became My Allergic Child

February 5, 2015:

It was a normal day in our home. I was sitting, pumping while Josie was sitting on the couch next to me, playing with her toys. She seemed so interested in what I was eating. “This child has yet to be interested in any food”, I thought. Every single time I’d attempt to feed her she would refuse it. She couldn’t even tolerate a simple glass jar of baby food. She’d vomit it back up an hour later.

So when I finished pumping, I decided to shove a tiny piece of my egg bake into her mouth and, well, the rest was history…

What I managed to push into her mouth was itty bitty teeny tiny bit. I honestly didn’t even think I got any in her mouth or that she swallowed any…

But she did…

Here was my post on Facebook that day:

“I’m at the Pediatrics. Josie had a severe allergic reaction. It was either eggs or feta cheese. It was a super tiny teeny little bit that made it inside her mouth. (My egg whites, spinach and feta bake). She immediately got red and itchy around the mouth and looked like little bites. And then she threw up and went poop. Within 45 minutes she was red all over and screaming. I almost took her to the ER. Now I’m here. I’m a mess. What did I do? Has anyone experienced this!? I never want to feed her foods ever again.”
While at the pedi, she started to desat. They had a lot of trouble getting a reading on her and when they finally did it was really low. Super low. 80%. She was pale in the lips and tips of her fingers/toes. I had no idea what was going on. But looking back now, she should have, without hesitation, been given Epi from that doctor! She had all the symptoms (not just TWO). But had I known then what I know now, things would have went a lot different that day. We spent 4 hours in that office while they monitored her oxygen.
That was the day I became Josie’s advocate. When I stopped trusting any and all doctors and what they had to say or prescribe. That was the day I turned into her hyper-vigilant, anxiety stricken mother. Her protector. Forever. This day changed both of our lives. It changed our family. It changed everything. Because little did I know then, that she’d be allergic to so much more…
Here is a photo of her before they sent us home. She was still very lethargic and red. But not nearly as red as she was when we got there 4 hours prior. She was full of vomit and completely exhausted. Josie was never one to cuddle up into my neck like that. But she was scared…this was the first for her.
(Side note: she totally looks like Juliette here, right?)
After that was all said and done, I scheduled allergy testing to be done. A swallow evaluation. A barium swallow, a GI consult. An EGD was recommended on my 10 month old (what????-absolutely not happening on my watch!), a nutritionist, a speech therapist and an allergy and immunology physician.
I was going into this blind. I had no idea what I was doing or what I was getting myself into. Most of these consults were a big waste of time. Until we discovered that her lack of eating/interest in food was basically because she knew it was poison to her. Smart girl. Terrible mommy. I should have known better. Especially to give 2 of the top 8 allergens together at once (for real, Stacy?!).
Just like today, when she was skin tested back then, her skin only took seconds to react. They didn’t even have to wait the full time to see if “maybe” there was a reaction. It was, without a doubt, positive. And this is what I posted on Facebook that day:
March 25, 2015:
“Sad momma here. My poor baby is allergic to dairy, eggs and casein (so far).”
And this journey and struggle continues. This was only the beginning. SO much more has happened since that day.
Screw you, food allergies!!!

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Food Allergies Suck!

I guess I should say allergies SUCK! And so does asthma!

So I know I haven’t said much about what has happened to our sweet Josie on this blog (in the past). I have promised an update or story but never really did it. It was too hard for me to travel back down that road and re-live the events that occurred. It was emotional and terrifying. But most recently (a few days ago), we had her retested and this was my update:

At 9 months old she had an allergic reaction to diary and eggs. And days away from her 2nd birthday, she had an anaphylactic reaction to dates and cashews (tree nuts). I almost lost her that day (I’ll always and forever be grateful for the love and friendship of Shantel Brock-you are an Angel). While her lifeless body lay in the hospital bed and her lips blue and her lungs trying to pull in all the air they could, I lost myself that day. Since that moment, I’ve never been the same. I’m scared at every given moment. No one TRULY understands. It’s painful. Not only does she suffer, but I do too. I always try to get out with other moms to get Josie to play with others but most people don’t know that I suffer in silence. I worry. My anxiety has turned into panic attacks. I make myself sick. I worry about too many kids with too many food items and not being able to watch her every move. It’s literally drove me insane. To the point where now I am seeking help to be the best mother to her. Because that’s all I want. I want to be normal, too. I try to stay strong for her. It’s hard. And no one can tell me anything that will make me feel better. Only a parent of a child with allergies can explain or relate to the never-ending fear that lives inside. The nightmares. The “what ifs” that seems totally ridiculous (to most people). Well, my little girl got blood tested after her near death experience and PICU at children’s hospital (over a year ago). And the results were shocking. Almost unbelievable. And here we are, more than a year later with high hopes that maybe, just maybe something has gotten better. Maybe something she was able to out grow. I finally found her a fantastic allergist. Who sat with me today for 4 hours ya’ll! 4 HOURS!!!! Why? Well, here’s the story: I made the appointment because my sweet girl starts school in August (Pre-K). And also because I’m tired of harboring her from play dates. I make up excuses but never want to blame it on her allergies. Really, it’s my worry (is what I keep telling myself). I just want her to get out more! The allergist and I sat there and talked about blood vs. skin testing. Skin testing is much more able to tell you the truth rather then false positives. Her blood work could have very well had some false positives. The doctor and I were positive and sure that that was the case. She asked me if I wanted the “tree nuts mix” or each separate nut tested on her skin. I asked for each separate. We tested, dairy, egg, tree nuts (all), peanut and chicken via skin test. Prior to this we were both so excited that she may be able to try COOKED dairy and egg (it changes the protein), and she may eventually out grow this. Skin test usually take about 20 minutes to react. Josie’s took 20 SECONDS! Yup…you read that right! 20 seconds! My poor girl came back positive then ever to all the allergens that she once tested positive to. Only this time it was actually worse. The doctor lost hope at that point. Her face said a thousand words. Her voice changed. She seemed truly concerned. I asked if we had to go to the ER? Was it THAT bad? She said it was pretty bad but we would keep an eye on her, give her benadryl and all that we spoke of earlier was out the window. No cooked dairy or egg. No trials. No reintroducing foods. She even mentioned that the likihood of her outgrowing this is not likely and won’t be tested again until she’s 5 years old. My heart sank. I can’t help but feel immense guilt. What did I do to her? Why? What happened? I made her, why can’t I fix her? I tried to keep my composure so Josie wouldn’t read my emotions and get even more scared. The doctor knew it was happening…I lost it. If I could do ONE thing in this world it would be to take THIS away from her and give it to myself. I’d do anything to make this go away. So the entire point of this post? Well, because some people don’t take Josie’s allergies seriously. THIS FOOD IS POSION FOR HER! It’s immediate and it’s DEADLY! IT IS POSION! IT CAN AND WILL KILL HER! And I hate when people say “oh just a little tiny bit won’t hurt.” Or they let their kid sip on my kids cup (well, your kid just ate a cookie that contains eggs/dairy, whatever else). People don’t realize the seriousness of contamination. Did you know that when I almost lost her more then a year ago, she ate a teeny, tiny bite of a Lara Bar (dates and cashews)? Tenny tiny! That’s all it took. Seconds went by and BAM…ambulance, ER, PICU and almost intubation. FAMILY, FRIENDS: PLEASE, PLEASE, PLEASE take this serious. I can’t bear the thought of anything happening to my baby as long as I’m living on this Earth. I NEED you to understand the seriousness! I NEED you to respect my wishes. Understand why I clean like I have OCD! Because there ARE allergens in our home. THIS is why I have a hard time getting out. THIS is why I have a hard time meeting other moms and getting my child to play with others. She’s a great kid! She’s super sweet and smart and LOVES to play with other kids. I just don’t want to be the mom that looks like I’m crazy, or hovering or nuts. The PTSD from almost losing her was and has been hard on me. The nightmares still happen. It could be why my panic attacks are at night, randomly. I wake up crying some nights re-living that event. The images just don’t go away. So although I’d LOVE to meet up and have my kid play with a ton of other kids. I just can’t because of me. I’m grateful to the friends and family who understand. Who truly know that one teeny tiny bite can kill her. Who respect my “craziness” and know I’m not insane. I love my daughter. And without her, there’s no me. Everything I do and don’t do is for her (them). Below are the pictures from today. They are heartbreaking. They are scary. They are what they are. My girl is happy and healthy. What she eats, is all she knows. She doesn’t eat junk. She’s doesn’t live off fast food, she just eats to live…she doesn’t live to eat. We live in a society where eating is all part of socializing. So with me having celiac disease and Josie’s food allergies, we don’t get out much. And it’s sorta depressing at times. It’s a lot of work to leave the house to go somewhere. I always worry about what she will eat…what I will eat…it really IS exhausting. So this is the truth ya’ll. THIS is why I am who I am. Josie NEEDS a mom like me who is hypervigiliant. I am her mother and her advocate. Please understand…my daughters life is priceless to me.

***The top left is PEANUT. The bottom left is CASHEW (what she had a reaction to in the Lara Bar a year ago). To the right is Chicken, Egg and Milk (top to bottom).

After thinking about this for the past several days/nights, I’ve determined that I’m not stopping here. We are going to see another allergist next Thursday. I want more done. More testing. Most opinions. I can’t stop and won’t stop at “well, we will re-test her again when she is 5-years-old.” At first that was okay. But the more I think about it…no! I am not done! What can we do?! There has to be more! I want blood work done. I want it all. I want her asthma reassessed. People seem scared to touch her. Tell me what to do-I’ll do it!