A Second Attempt at OIT:

So Josie’s first day of OIT was a big, fat, fail…

And I’m not going to lie…it was completely all my fault. Why? Because I’m me. Me as in the anxious, scared, get-these-flash-backs-of-her-dying-in-my-arms PTSD moments. My anxiety was so heightened at her appointment, I almost felt like I was going to die. I took a glance at my FitBit to see my heart rate and it was above 120. That was at resting. Lord. I look back now and am so angry at myself for ruining this for her. This time it’s going to be so much different…

Well, with that being said, our sweet girl is starting her first day of OIT on May 9th! (If we can get this illness out of our house!) This time we’re doing things a little differently. ..

Daddy is going to take her. As most know he’s much more relaxed and she (I think) is more drawn to him. I booked a hotel the day before and the day after only 0.2 miles away for if they need me or I want to come there. I could walk there if I wanted to.

But for me to physically be there? No way! I am no good for her. My husband has told me, the allergist knows and that entire office probably thinks I’m nuts (no pun intended). But that’s okay. I am. I’ll admit it. I am terrified of feeding my child small lethal doses of a food that could potentially kill her. But on the upside there are thousands of positive stories and the success rates are phenomenal. The decision is a no brainer. We’ll do anything for Josie.

Of course with any doctors appointment that I cannot attend, I will probably pace the hotel room with my 19-month-old in hopes to not hear my phone ring. The first appointment can take anywhere between 4-8+ hours. Not a trip that I want to be involved in because I cannot imagine being calm enough for her.

We’ve made some pretty huge steps since that last attempt. Josie now takes Zyrtec liquid in a medicine cup. WHICH IS HUGE! She wouldn’t touch any medicine, at all, what-so-ever (without throwing it up) and because I’m sure her PTSD from past reactions/hospital visits/ICU, etc. But what she absolutely WON’T take is anything in a syringe. KEEP ANY AND ALL AWAY FROM HER. It terrifies her! Like to the point of freak out, throw yourself on the floor, type of freak out. So when we attempt again this time, they will NEED to put their syringe (they used on her last time), in a medicine cup before even entering the room and I’m willing to bet she’ll down it like a champ.

She seems to think she will go to the doctor once and walk out of there eating ice cream. Children have no sense of time. Since our last visit we talk about that doctor a lot. In fact, we talk him UP a lot. We finally convinced her that she can eat what baby sister does if she will go and see this doctor.

Josie: “Mama, can I go see Dr. S so I can have him give me medicine and then I can go eat ice cream with you and daddy and baby sister, please mama, please?” How precious is that? And bless her heart! It’s literally the small things in life we take for granted. She has no clue on the amount time this will take to be “desensitized” enough for her to enjoy that ice cream cone one day. Thank goodness we’re doing egg and milk at the same time. If that goes well, we’ll move to tree nuts and then peanuts (together or separate, we don’t know yet). Then try to tackle the whole chicken thing…

This post is short and sweet. Mainly a reach out to those friends and family who have prayed for Josie before, to please, please, please keep us (Josie) in your positive thoughts and prayers. Please pray that this works for her. I really do have good faith in this allergist and I am confident he will change our lives forever. And if that being the case, I will never know how to repay him for that. It will be priceless!

Read past experience here:

Josie’s Journey into OIT-Day 1, The Consultation

Reflection

Flashback: The Day Josie Became My Allergic Child

Food Allergies Suck!

Food Allergies

This is Our Lifestyle

 

Reflection

My daughter has a “disease”…FOOD ALLERGIES. But that doesn’t make her disabled. That doesn’t mean that we can’t be around people or have people visit us. It doesn’t mean we don’t want to be invited! It doesn’t mean that people have to be scared to come over to our home and play with her. Or have people visit with food. This just means we (her parents) need to be careful. This just means that me, her mother, will be a little more watchful of her when we go places and pay less attention to conversation (my apologies-I may look like I have ADD). It means I’ll have to learn to multi-task. It doesn’t mean that her life is restricted from living it normally like all others without food allergies do. We are learning to LIVE WITH IT! It just means her mom will be anxious, so get used to it. This is the new me…the permanent me. I’m not going to change. It doesn’t mean that I’m not a good friend or fun to hang out with. It just means my senses will be heightened and you may not be used to that. I may be listening to you but staring at my child. It just means that I love my child more then anything in this world and she is NUMBER ONE in everything I decide to do and everywhere I decide to go. Josie is an amazing, fun, loving, sociable, full-of-life little girl. And if you know her, YOU KNOW THAT! And she plays well with EVERYONE, of all ages. She loves to laugh and sing. Dance and dress up. She’s a normal little girl, who loves to play with her friends. Please don’t exclude her because of her food allergies. Trust me when I say that I am always prepared and ready to jump into action if needed. You cannot possibly imagine how my mind spins 24/7 with worry. But more than ever before, it’s now the time to let go just a little bit and it’s time for me to realize that THIS is our life. It is not going to change. THIS is how it will be. THIS is how we are going to have to make it work. I have NO control over curing her. But what I can do is give her the most normal life possible without making her feel left out. I won’t make her feel left out anymore. I won’t keep her home because of MY worry. She’s getting older and starting to realize it. She senses my anxiety, stress and worry. And I can’t help but say shame on me for allowing her to see that. Now I realize that for her sake, I need to step away and find a way to worry without showing her. She’s a smart little girl! So day by day I will give her a little bit more independence…but I’ll never, ever stop hovering. That’s the mother I will always be for Josie. I was meant to be her mom.

SaveSave

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!!!

SaveSave

SaveSave