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

Today we had our consultation with (another) new allergist for Josie…

It was a 4 hour drive (technically 3 hours) to Austin from Houston…

But after two diaper blowouts in the carseat, several pee stops for Josie and getting gas and coffee, we finally made it. Everyone was a little over it before it even began. It was a long ride.

My nerves are shot. My girl screamed through getting her weight, height and VS (absolutely refused). The doctor was very kind and patient and spent over an hour with us as I cried on and off about a plan and how much guilt I have from her allergies and near death reactions. We are set to start OIT August 14th. I’m totally freaking out. I am so happy with this doctor, but I am absolutely terrified and anxious for the pending thought of actually doing this. I don’t know how I’m going to rest easy up until this day. I need a good distraction. So friends that are local, please help me with this. Y’all that know me, KNOW I’m anxious all the time. But I REALLY need y’all more then ever right now. I’m afraid I’m going to talk myself out of doing this because of my own fears and panic.

THE PLAN: We are doing BOTH egg and dairy at once. The younger in age, the better outcomes. It’s just getting this girl to cooperate and stick to the plan that will be the challenge. How on Earth am I going to get a toddler who hates food to eat this dose for me daily?

BAD NEWS: He did say how much he’s concerned about her numbers. And said numerous times that “her numbers are high. Really high” 😢. But he has a good feeling about this and I’m going to try my best to trust him with my baby.

The first appointment is at 8am. It’s a 6 hour appointment. The waking up early, the drive and the time spent is just a teeny tiny sacrifice we’re willing to make to help our girl.

Let’s remember: THIS IS NOT A CURE. Especially with her numbers, this only helps her NOT to develop an anaphylactic reaction and/or to (in hopes) desensitize her from these foods. But the catch? She’d have to eat them every single day for the rest of her life to maintain that desensitization. Eventually she’d be able to eat these foods but not in high doses like mama can eat an entire cake in one sitting. 😂 (I’m trying to be funny here although I feel like crying). I just want my girl to have the peace of mind that time is on her side if she ever bites into that food.

The plan to tackle peanuts and tree nuts is down the road. Those levels are just too high. And dairy and egg are in everything! I think it’s smart to start there.

WHAT TO EXPECT: This process of desensitization, can take anywhere from 6-12+ months JUST to be able to bite and not react. And all the work is on me. I have to make sure she stays on her doses and sticks to her regimen. And y’all know how I am with regimens. If I’m good at anything, it’s that.

We will travel to Austin every two weeks (to up-dose). At that appointment, they will give her an increase from the two weeks prior but ONLY if I’ve given her the allergen in that small dose at home every day (full 14 days) leading up to that next up-dose (increase in allergen).

I can’t believe we are doing this y’all! I can’t believe it!

I know so many people will ask. And so many have reached out with good vibes and prayers. I appreciate you all. Thank you to those who’ve reached out and those continuing to pray for our Josie girl. I have a good feeling she’s going to be in good hands. And we are both willing to do anything to get this to work.

We’d like to track our journey. And when I say “our”, it’s because it’s not just Josie’s. Although the end result is for her to have a more normal life but also for her to have a more normal mom. I can admit that I had anxiety before kids. But after kids it got worse. But then having an allergy child made it 100x worse. So if she can get well, then so can I. We can both breathe together. I have faith this doctor is going to one day give us all what we’ve been waiting for. This is all in God’s hands.

SaveSave

SaveSave

SaveSave

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!