We had a regular OIT day, nothing to report except I may go broke buying movies to get through rest time. Today we purchased and watched Rio 2 on Amazon Video. Cute movie if you liked the first one!

What I do want to talk about is hard for me to write about. I want to talk about how to be a supportive friend to someone who has a food allergy child. It's difficult to write because I don't want to be perceived as needy or asking for these things personally. Or calling out friends that do or don't do what I am about to mention. Sure, I have been let down, we all have with friendships, but I do have some amazing, supportive friends! They check in and offer to help with my oldest when I have to take my food-allergy son to the doctor. The past week I have been so grateful for my friends.

My long-term goal is to use my voice to help others outside of the food allergy community. There is support out there for families living with food allergies, but less positive resources for those who sit on the outside, but have a friend, co-worker, or neighbor impacted by food allergies.

Let's first be crystal clear. I am not talking about family in this post. Family is a completely different topic.

We all know what it's like to see someone struggling--or just going through a tough time--and you don't quite know exactly the best thing to say or what to do. Often times we use a general, blanket statement like, "I'm so sorry, please let me know if there is anything I can do to help." Or, perhaps we say something like, "I'm here for you, day or night, just call me." We all say these things, myself included!

These are all really nice things to say to someone, and let's be clear about something else, I'm NOT knocking those statements, but I am here to help you do better. Be the friend that the one who is struggling will remember a year from now or 5 years from now. 

Supportive friends say similar things as mentioned above, but then they go a step further. Here are some examples:

Example #1:
Let's say your friend's child had a severe allergic reaction and she is scared.

First you would say whatever is authentic to the situation. Something like, "I'm so sorry this is a tough time right now for you. You must be scared to leave your child's side. Please know that I am always here to listen, (day or night), run an errand for you or if you just want to get out of the house and do something for an hour or two, with or without the kids."

Now you are the exceptionally supportive friend so you will not wait for the struggling friend to call and redeem the offer. Text one morning and again on another night and ask "How are things? How is your child doing? How are you feeling about it all?" Asking the question gives the person the opportunity to talk and vent if they desire. And you do that often, checking in, asking questions. When a person asks specifics like "How did you feel when your child was reacting?" that opens the door for a conversation instead of the "How are you?" and getting the reply of "We're doing okay, thanks for asking." Listen to your friend and respond. Ask more questions. Questions show you are actually interested in learning how she is feeling and why she is feeling that way.

Then, next time you are going to the store, send your friend a message and say, "I'm running to the grocery store, can I pick up any allergy friendly goodies or a coffee for you?" If you know the allergies and something that is safe, pick up something without asking and drop it on her doorstep. Add a magazine or something for her and just tell her you were thinking of her.

One of the hardest things can be getting your friend to do something. She may not be ready to leave her child in fear of another reaction. Ask her if you can bring over coffee and just hang there with her. Ask her if she wants to meet a park with the kids. Ask her if she wants to go to Target when the kids are asleep. Whatever it is, ask her to do something. If she says no, try again another time.

Example #2:
Your friend is starting OIT with her child and it's nerve wracking. To top it off, she is alone. (I don't know where I came up with that example? Although my husband is back now.)

Emergencies. Blah. Yuck. Double blah. Food allergy families plan for food allergy emergencies. I personally role play in my head so I'm not scrambling in the emergency. Some of my favorite things friends have said to me have been to show me they are okay being the person I call in an emergency. Friends have said...
"I will drop whatever is going on and come if you need me."
"I am going to turn my ringer on tonight, and loud. So call me if you need me to come over."
"If you have to go to the hospital, I will take your older son here so he doesn't have to go too."

I have an amazing friend and fellow food-allergy mama that often checks on me when my husband is gone. It's sweet! Do that stuff. 

Good friends make you feel supported and that you have back up in an emergency. It's never good to feel alone.

And if your friend is starting OIT, ask her if she wants to borrow some DVDs or ask if she wants to borrow some books/games/puzzles to make the mandatory rest period more fun. See something at the dollar store? Put together a rest time bag for the child with little, calm activities. Ask if she needs help during the up-dosing appointments.

Example #3:
You are having a party and want to invite your friend and her food allergy child to the party.

It's all in the communication and start early. "Hey friend! I am having a party and would love it if you and your child would come. But I want to make sure it's safe for him/her. Can we talk about what I can do to help you to be able to come and enjoy the party?"

Now ideally you do this as early as you know you are having the party. If the child is anaphylactic to a food and it's possible to avoid the allergen then simply say, "I am happy to avoid peanuts on the menu." 

I had a friend invite us to a party and she said, "We will have no peanuts on the menu." It was that simple. We brought our own food for our food-allergy child because of the cross-contamination risk, but we felt comfortable attending. Then when we arrive her husband told us he made sure not to feed the kids peanut butter that day and they wiped the counters. A hug was appropriate in that situation.

Now know that some people may not tell you anything as they don't want to be a burden. So you may have to pry. How can I accommodate the menu? Should I wipe anything down? 

We went on a park playdate once and the sitter who organized it texted all the moms going and asked them not to serve their kids peanut butter before they came. More hugs!

Going above and beyond in little ways says SO MUCH.

Please comment below with any comments or questions on supporting food-allergy families. There are many more examples for future posts. 

If you read this far, you are a supportive friend. Thank you! Love you!

Today was a cluster. Really. None of it OIT related, but it was a cluster that started at 7:50 this morning. My oldest son (no food allergies) was afraid of something but wouldn't own up to it and tell me. By the end of the day I finally figured it out. And if he had just told me, I would have been able to get him the information he needed to no longer be afraid, or at least greatly reduce his fear. This instance was not allergy related, but the lesson is.

When armed with information, you can significantly reduce your fears and anxiety.

My OIT son is 4 years old, and my oldest is 9...a fairy mature 9 unless he is playing with his brother. So when we knew OIT was starting, I chose to pull him aside to talk to him in detail about what going to occur. I also spent over an hour with him giving him the full allergy training I give at school. He learned the signs and symptoms of a mild vs. an anaphylactic reaction and what do in those situations; he learned about labeling laws; he learned about inclusion; he learned food allergy statistics; and he learned how to administer an Auvi-Q and an EpiPen. 

I talked to my oldest about what the "rest period" during OIT meant and what I expected of him. I talked to him about it all, except the fact that his brother would be actually consuming the allergen. I told him what I told my 4 year old. That he would be taking "special peanut medicine to help with his peanut allergy." I did tell him he may eventually eat a peanut if his body accepts the medicine and it would help protect him when he goes to elementary school. He was on board as he is very well aware of the allergy risks at school. 

My hope is that I have armed my 9 year old with the information and training to not freak out in a situation. I also hope he takes this seriously and is respectful. But my biggest hope is that he has the information to not be afraid, rather he has the information to be strong and positive for his brother.

That said, my husband and I have worked very hard, (especially the first few days when everything was new) to give our oldest more attention and praise so he didn't feel in the background when we were obviously focused on this new OIT environment in our home. One-on-one dates, special reading and snuggling, notes in lunches or on their door, whatever it is (no matter how small) they can make a difference to the experience the non-OIT kid has during the initial introduction phase.

Dare I say I may be starting to get a hang of things?

Dr. Dan's chapstick, pillow, stuffed animals, lunch, dose, 5 sips of water and swishing and swallowing, more food with apples or applesauce, and finally two hours of rest.

But I fear as soon as I get comfortable with a dose it's time to go in for an up-dose. I got the text message reminder today. Thankfully we have chosen to up-dose every two weeks instead of weekly. Perhaps two out of four weeks a month I won't be on edge.

I was on the side of sad today. I did put makeup on today. I did leave the house with the kids 3 hours after dosing. We didn't have any OIT concerns. So why then was I on the side of sad today? I suppose its a part of the process. Feeling a little sorry for everyone involved--including myself. But then I tried to remember my number one goal - reduce risk in elementary school and beyond. And then I flashed forward to college (father than I expected my imagination to go). My son could dose having a bite to eat before going to sit in a lecture hall for an hour. Hopefully by then the rest period will be shorter, or the landscape of food allergies as we know it is drastically improved. Either way, with OIT he could eat in the cafe with his friends. And by "the cafe" I really mean "ANY CAFE."

I am going to remember to visualize when I am down. Not something I have really ever done before, but why not? Everything else is new to me these days.

No school today. No Dad today. The kids and I did some drawing, I used YouTube since I have no artistic bone in my body. I love the quick drawing tutorials! Above is mine. My OIT kiddo is obsessed with planes right now, specifically military fighter jets. That might be a little more complicated to draw so I started here. Speaking of complicated...

​I never really like it when my husband travels. It always snows heavy or there is some big event when he is gone. It's never normal. And it still doesn't feel normal yet here just on day five of OIT.

Here are some things I found helpful today when solo parenting and wanting to be more child focused than housework. So when it's early on in OIT and you are a single mom or parenting solo, here are some tips:

• Grocery shop as much in bulk ahead of time. (My husband shopped for me yesterday!)
• Make meals ahead (Yesterday I asked my husband to grill salmon for tonight and pork chops for tomorrow.)
• Wash and chop fruit and veggies (Yep, you guessed it! I asked my husband to wash and cut the broccoli so I just had to drop it into boiling water. He also chopped a bunch of veggies for the week for the kids.)
• This morning, pre-dosing, I took the opportunity to prepare my son's school lunch for tomorrow and snack bags of everything that goes in his lunch for every day of the week. I will have to make sandwiches daily, but the snacks and veggies are ready to grab and go.
• PAPER PLATES AND BOWLS. Let me say that again. PAPER PLATES AND BOWLS. I decided because I am killing the environment using them this week, I am using my Norwex cloths to clean the counters and floor after meals so I am off setting by not using paper towels. (Whatever makes you feel better using disposable. But I am telling you, no dishes is a lifesaver.)
• The end of the day is always crazy. So I took the garbage out mid day. I made the coffee for the next day then as well. I filled humidifiers for the night and all the little things that stack up at the 7:00 p.m. hour.

These things are just good tips for non OIT families as well. But having the freedom after dosing to know I didn't have a sink full of dishes, dinner to make or garbage to take out made a huge difference in latter part of the day. I was able to focus on the kids and watch them more closely. We had so much extra time for me to play and even snuggle on the couch. 

The only thing that didn't go smoothly today was rest time. Our 4-year-old OIT kid was roaring to go build LEGOs after watching one episode of LEGO Masters. So I had to coax him into watching more T.V. as I don't trust him to play calmly when his brother is around. Those two together think they are LEGO Masters, but they are LEGO wild and crazy...anything but calm.

When given the choice for something with a number, I always choose a number related to my lucky number #4.
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OIT Day #4 did not disappoint! 

We played outside in the morning and enjoyed the sunshine. We came in early enough to have my son's heart rate go back to a resting heart rate, ate lunch, dosed, drank water and had a 2 hour rest time. He was wanting to get up and play with his brother's new LEGO airplane, so I did have to come up with something else to watch to entice him to stay on the couch for another 30 minutes though. 

I cautiously let them run around at the 2.5/3 hour mark and all was well. 

There was no throat clearing or coughing and we did not give Zyrtec.

Today was also the first day with no tears from anyone...thank you lucky #4.

Tomorrow my husband leaves for a 4 day business trip. There's that number 4 again. 

We are now at the dose of 1/400th of a peanut, reduced from 1/100th on Day 1. 
There's that lucky #4 again. 

If I had written this post in the morning you would have heard I was scared. Our son woke up and shortly thereafter he began throat clearing and had a dry, short cough again. My mom gut told me it was related to the OIT dose, even though the allergist suggested otherwise. I am glad one of the parents in the OIT Facebook group I am in said she would demand a reduced dose and not updose for a month, taking it slow. Her thoughts were that there shouldn't be any detectable reactions this early on and this could be his body's way of reacting.

I can't continue like this. On pins and needles with a tickle in his throat coughing. And my husband is traveling the better part of next week on top of it all.

I messaged the allergist and kindly explained that my mom gut told me the throat clearing and cough was related and could we reduce his dose with the current suspension we had in our fridge. (We don't live close to the allergist.) She responded quickly with a new dose and was positive and supportive. I am constantly reminding my family, if you don't ask for what you want or need, you aren't likely to get it. I am extremely pleased that she was receptive to my concerns and desire to slow down. She did request we get a strep test though since my oldest tested positive last week.

I quickly called the pediatrician's office to see if we could get an appointment today. Nope, Monday 9:00 a.m. I hung up the phone. I listened to him cough and clear his throat. Nope, I couldn't wait until Monday. I called back, I politely explained the situation and told her I know she was in the call center but could she somehow reach a nurse in the office to see if we could just get swabbed for strep. As I waited 5 minutes on hold I got ready. The nurse came on and said, "I'm sorry we can't do that." Here we go again, if you don't ask for what you want or need, you aren't likely to get it. I politely explained that I understood, but if she wouldn't mind asking the doctor and that I didn't need much of her time, just a quick throat check and a swab. Desperately and confidently all wrapped into one I then said, "Can you please ask her?"

A few minutes later the nurse came on the line and asked if we could be there in 20 minutes. "Yes," I said, but I was worried we wouldn't make it.

It's about 15 minutes from our door to the check in desk. My oldest pulled out his happy go lucky voice and got his shoes on and talked his brother into going. I pulled out the "let's have some suckers and get in the car" card and we were off. Oh wait, no. Because my son was clearing his throat so much he was drinking a ton of water. We were buckling up and he decided he had to pee. Back in the house we went!

We managed to be walking in the clinic's door at the appointment time. Whew!

A lot of craziness but in the end we ruled out strep because his test came back negative. I messaged the allergist and asked if Zyrtec or anything would help. Her Physicians Assistant said yes and so we gave him some shortly after his lunch OIT dose. And...

We heard no more coughing or throat clearing for the rest of the day! Yea! 

But is it the Zyrtec that solved it or the lower dose? Tomorrow we will try not to give Zyrtec and find out.

I am getting ready to go to bed in what was once my safe place. Our home was always a place I generally felt safe in with our food allergies. I diligently called companies so I could ensure the products in our house didn't share manufacturing equipment with peanuts. But now, dosing his allergen daily and then watching him like a hawk, all of a sudden our home no longer feels safe. I don't feel safe anywhere right now and that's something I didn't consider before today.

"It's just day #2."
"Take it one day at a time."
"You will soon find your new normal."
"You'll figure it out."

It's like when someone tells you to relax. It's almost infuriating, and it makes you more mad and the furthest from relaxed. All of the above are not suppressing the tears of fear and guilt today. It's not calming my frustrations or nerves. I was fine yesterday.

I woke up after promising my 4-year-old we would play all morning and I wouldn't clean ANYTHING. Whoa, I know. I quickly jumped in the shower because I knew "Mommy's going to shower" wasn't going to fly cutting into play time and all I would get would be at minimum a chance to dry my already almost dry hair. With a shower in I felt ready to play LEGO airplanes all morning and build a new one that arrived as well. We played. We ran. He had my full attention. 

Well, that's a lie. I was paying attention and present, but after my 4-year-old didn't want to eat breakfast I was watching the clock preparing for dosing time. He had to get enough food in his system. He had to hydrate. He had to be calm 30 minutes prior to dosing. He had to eat a lunch with his dose and something after dosing. He had to swish and swallow his water five times after dosing. I needed to have everything ready for his T.V. time after dosing so he wouldn't want to get up and get something. Mr. Independent was mad before dosing that I went to his room to get his pillow. I had to go back upstairs and put his pillow back in his room so he could climb the stairs to get it himself. Was he too wound up after that incident? Was his heart rate elevated after climbing the stairs? So many things besides playing were in my brain, but yet I still managed to have fun.

We ate lunch, dosed, remembered everything, and all went well with the rest period. We ended up watching a movie midway through so we had a full 3 hours of rest time. And then he got up and began activity. A dry cough started. I made him drink water and calm down. It went away. Then it came back. At the 5 hour mark the same thing happened. He said his throat was sore. He was clearing his throat. 

I was worried about him. Worried about my oldest who returned to school that day but when home wasn't getting the attention he needed and felt he should stay in his room due to the cough happening when he was involved in activity with his brother.  I had pure Mommy guilt.

I ended up posting in my OIT Facebook group and they advised I reach out to our allergist. I did and she said it's pretty far out from dosing, especially at the 5 hour mark. She said lets watch and make sure he wasn't constipated as constipation is associated with more delayed reactions. Sigh, I have so much to figure out. Back at it again tomorrow. One day at a time. We will get to a new normal.

All the "to do" boxes checked and mentally prepared for a full-day of rapid desensitization we woke up to a morning where winter decided to finally show up in February! Shoveling was just another thing to deal with after having to quickly alter our plans for our older son who tested positive for Strep the day prior. (Luckily we had quarantined him in his room with lots of movies and our allergist said we could proceed if my allergy son felt healthy.) My "I'll do what you need me to" husband woke up early, picked up my mom and brought her over to stay with my oldest and shoveled the driveway all before I had my hair dry. I know he was happy to do it as I had taken the lead on all the preparing and packing for the day thus far. 

I baked chocolate sprinkle donuts the day prior to ensure my son would eat breakfast at 6:30 a.m., as he's a late riser and a non-breakfast eater by nature. He ate most of it with some fruit and then willingly got his boots on and we were out the door. 

After some goldfish and water during our snowy 45 minute drive, we arrived just on time at the allergist's office. Consent forms and a full consultation had already taken place a few weeks ago so they didn't mess around and we quickly got started. 

From 8:35 to 2:46 our little 4-year old patient consumed 21 doses of his life-threatening allergen. The first dose was 1/30,000th of a peanut or something crazy like that. And the last was just about 1/100th of a peanut. Every 15 minutes or so he would consume a liquid suspension of orange Tang or Kool-Aid, (I don't really know what they used) mixed with the peanut powder. 

Yes, we had prepared our son on what was going to happen that day. Yes, I bought new LEGOS, new books, and snuck away some Christmas toys when he wasn't looking and forgot what he had opened for this day. Yes, my husband put down his phone, took the day off work and played with his son. Yes, I baked muffins and packed lots of snacks. Yes, we lucked out with a decent night's sleep. But it doesn't matter what we did. Our 4-year-old pulled through like a champ. He sat up tall; opened his mouth and drank his doses; squished and swallowed water five times after each dose; had his lungs, oxygen and heart rate checked before every dose; and ate applesauce because his doctor said it was good for him even though he hates it. He pulled through in every way imaginable. To top it off, when we got home later he said, "It was fun playing at the doctor's office today." 

My heart was proud of my son and my heart was so happy we didn't experience any sort of reaction whatsoever during the process. I had heard mostly about mild reactions including itchy throat, tummy aches, vomiting, etc. But he kept saying, "I'm fine" and he was!

The long day did catch up to him though and he had some tears that evening. I ended up sleeping with him--which I never do--until about 2:00 a.m. just to make sure he was okay. But when he started kicking me and I was scrunched in the corner of his full-size bed I snuck out to my room. When he woke up, he didn't even remember we had a "slumber party."

I am hoping day #1 will be a blur eventually for us too.

Late last year the opportunity presented itself for my son, 4 years old, to start Oral Immunotherapy (better known as "OIT") for peanuts in 2020. My husband and I jumped in line cautiously, had 5+ hours of conversations with our allergist and four other moms of children who went through OIT, read "The Food Allergy Fix" and spent significant time discussing the options together. 

And now, here we are, about to begin. Our OIT journey starts in just a few short days, ironically just before Valentine's Day. I started this site Valentine's day week a year ago and never made any headway. Look what "I'm about to give my child his life-threatening allergen, now what?" does to me! Starting a website was daunting and scary, but now it seems like top 8-allergen free CAKE compared to what we are about to experience on day one of OIT.

What is Oral Immunotherapy?
Oral Immunotherapy (OIT) is training your body so that it no longer thinks your allergen is the enemy. You are desensitizing the immune response by consuming the allergen in gradually increasing amounts. The desire is that the patient will eventually be able to consume the allergenic food without experiencing an allergic reaction.

Day One of OIT
This is the most difficult day I can foresee. This is a rapid desensitization day where the patient consumes extremely small amounts of the allergen over 6-7 hours. This all-day OIT boot camp I am calling it, (because it is sure to kick my butt and I won't want to sign up for it again) prepares the patient's body to then accept pre-measured daily doses of their allergen at home. 

Every two weeks after our son's rapid desensitization we will then return to the allergist for an increased dose to then give for the following two weeks.

When to stop is determined between the patient and the allergist based on how the patient is doing and what the patient's desires are. Do they want to free eat their allergen? Do they want to just be protected for cross contamination? 

The Dreaded Required "Rest Period"
There is a dreaded two-hour required rest period each day after consuming your daily dose. Say what?! I'm complaining about resting daily for two hours? Um, heck yeah. Parents know what it's like with a young child. If you want them do to it, they want the opposite. "Son, go get all the ice cream out of the fridge and make an amazing chocolate sundae with all the toppings you want!" What does your son say? "No Mom, I DO NOT WANT ICE CREAM! I WANT A POPSICLE!" It doesn't matter what you ask, if it's your idea they want no part of it. And whenever you desperately need them to do something it's NEVER going to happen. So I am preparing my poker face and will not show any weakness or desperation. I will also blame EVERY.SINGLE.THING  on the allergist. Not my rules! Doctor's orders!

What's with the rest period? The short answer is if you get your heart rate up you can cause a reaction. No exercising, hot baths/showers, no running, no jumping, nothing that will get your heart pumping or your cheeks flushed.

"Hey 4-year-old boy! No running!" That's just bat s#&* crazy.

We will be watching lots of movies before we get comfortable testing out the rest period waters. I'm worried about him getting hot, getting frustrated, getting sad, having a tantrum or sibling fight, jumping, running, climbing the stairs, you name it I am worried about what could elicit a reaction. Blah. Damn rest period. And not just that, some patient's need only 90 minutes and others need four hours, you just don't know; two hours is the average.

Day One of OIT is Approaching, Now What?!

• Ensure your epinephrine is current and not expired
• Train friends and family on the signs and symptoms of anaphylaxis or a mild reaction
• Train friends and family on how to administer epinephrine
• Talk to your child about what to expect on day one of OIT; I recommend this book
• Use the following packing list to help you prepare for the rapid desensitization day and don't forget a vomit bucket and some plastic garbage bags for the car ride home just in case. You can line the floor mats with the garbage bag. 
• Finally, say a prayer, deep breath, meditate, dance it out, whatever is your thing...do it to give yourself the emotional self care to be calm, present and focused on day one. 

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Do you or someone you love have experience with OIT? Share your stories below, I'd love to hear from you!