oit.

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Oral Immunotherapy, aka OIT, is used to treat life threatening food allergies.

About two years ago, I came across a few mothers in an online food allergy group from my area. I soon discovered this new treatment. One of the mothers was already driving several hours biweekly to have her son treated for a severe milk allergy.  She was right in the middle of OIT. I was amazed! After a while, one of the mother’s organized an evening to meet and discuss OIT. We all sat on her patio and soaked up all the knowledge we could from this brave mom who was already treating her son. At the end of our evening, we prayed. It was a hopeful and earnest prayer from a group of mothers who were desperate for healing in their children.

I believe that even in the early stages of this process, God was behind it all. The coincidental finding of these local mothers, the one brave mom with all the knowledge and all the rest, it’s all God’s story.

There were two main reasons why this treatment was not an option for my son at the time of this meeting. #1 It wasn’t covered by insurance. #2 The closest doctor was 8 hours away.

Only a few months ago, we discovered that another doctor was added to the list of physicians providing OIT and he was only 2.5 hours from us. Also, he files with insurance. Not only does he file with insurance but, he is in our network, even though he is out of state. The procedures have already been pre-approved by our insurance company. There are currently only about 25 physicians in the country providing this treatment.

I met with one of those same mothers again last week because two of her children are already seeing this doctor and now in the middle of their treatment! She said, “I believe this doctor starting an OIT practice is a direct reflection of our prayers that night on my patio.” God knew I was going to need some major support on this one because he has brought some amazing Godly people into my life who are on the same journey I’m on.

Our start date is May 11th. The treatment itself takes about one year. The first day of dosing takes 6 hours in a room at a hospital. You start with tiny doses, literally invisible, and gradually increase, approximately every 15-20 minutes. Doses are given in clear liquid. The goal is to get to 3mg (still tiny) of peanut by the end of the day. You go home with doses to take at home every day. There are several rules that must be followed. For example, doses must be taken about the same time every day. Also, there cannot be any exercise or activity that gets your heart rate up for two hours after the dose. Studies have shown that this increases the chance of reaction. Also, illness complicates the process. Doses must be stopped during illnesses and you have to backtrack in your dosing. So, you may have worked really hard to get to a certain place, but often have to go backwards.

We will drive back to the doctor once every two week to “up-dose.” Then, travel home and continue our daily doses on our new dose. Once we are eating enough peanut flour, we convert to actual peanuts. By the end of the year, we will be eating around 8 peanuts a day.

This begins the maintenance phase which is ultimately forever. For at least a year, you eat a specified amount of the peanut every day.  Sometime later, a food challenge is given where a higher amount of the food is given and observed in a clinical setting. If the challenge is passed, the child often goes on to eat whatever form of the food they wish.

This is the gray area. Doctors aren’t sure about what happens next. A recent study showed that children who stopped consuming the food redeveloped the allergy within 3 months. Therefore, it is recommended at this point to continue consumption of the food indefinitely. But, seriously, who wouldn’t want to eat 8 peanut M&M’s every day?

Am I scared? Yes. I’m completely scared. In fact, more scared than I ever have been about anything in my life. It’s on my mind constantly. I’ve imagined every bad scenario. I’ve had nightmares and near panic attacks. I’m afraid he will have a reaction and never trust me again. But, I’m putting on my brave face. I’m in the process of turning off my worrying and picking up peace.

On the way to our first consultation with the doctor a few weeks ago, I felt like God spoke to me. I was praying and begging for confirmation. This is what I felt Him say to my heart. “It’s just like your pregnancies. You were afraid and there were bumps along the way. But, I sustained you. At the end of each pregnancy, your miracle was delivered.”

I don’t know what this process is going to be like for us. Many children race through with no reactions. Others have constant tummy aches and some have bad reactions. The unknown is frightening.

Here is what I do know. I know that my son can have an accidentally exposure at any moment. Every single day is a risk. The older he gets, the less control I have over the situation. Fear hovers over us. In the news, children are dying from this allergy.

But, no one has ever died from OIT. In fact, 80% of kids make it to the end of the treatment. They can safely eat the very food that would have hurt them only a year prior. This treatment is much more controlled than any accidental exposure without it ever could be.  I see pictures of my friend’s child with the milk allergy doing things like eating ice cream for the fist time and my heart skips a beat. They are done with milk OIT. A part of him is free that wasn’t before. I’ve seen many videos of kids safely eating real peanuts for the first time in their lives. I want that for Roman. I want him to conquer this!

All the moms, they say it is the best thing they have ever decided to do. They say it is all worth it x 1000! I have yet to speak with one that says they would go back and not do OIT. They are all very glad they did. All I can do it trust God. How could I not go for a chance to let God use this to heal my son?

As we approach the start date, please pray for these things. 1. Roman’s environmental allergies to not flare up this spring. (This could delay the process or make it hard for us to distinguish between environmental allergies and dose reactions.) 2. Health and strong immunity in Roman’s body. 3. Peace and strength in Roman’s mind and mine. 4. No side effects from dosing.

More post to come on our journey towards OIT!

life with a peanut allergy

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Roman was my first baby. When he was six months old, I let him lick a No-Bake cookie. Immediately, he broke out in a rash around his mouth. That was my first sign there was a problem. I chose to avoid peanuts for the time, until he could be tested with an allergist. Months later, he was skin tested which resulted in a very large skin reaction that left us for sure he was allergic to peanuts.

When he was two, he had an unknown reaction while traveling on a bus with a ton of teenagers in the middle of no-where Georgia. We were youth pastors on the way home from youth camp. It started with body hives and lead to profuse swelling. The skin over his joints was literally overlapping at the creases. We called 911 from the bus, they met us on the side of the interstate and Roman took his first ambulance trip to the nearest hospital where we stayed for several hours.

From very early on in his life, fear and anxiety had a chance to take root in him.

Several more times, Roman had unexplained reactions. Once, Roman was in classroom with someone eating a pb & j sandwich. Even though my son was instructed to sit at a different table, later in the day he had a reaction where his eyes swelled shut and he had difficultly breathing.

These instances always lead to antihistamines, steroids and breathing treatments. Our epinephrin pens are never far from us. Its our greatest fear that we will have to use it. The actual use of it isn’t what is scary. It is the idea that if we use it, he is having an anaphylactic reaction. Anaphylactic reactions can lead to death.

What is your greatest fear? Many of us would say suffocation. Imagine the fear of suffocation from an anaphylactic reaction. Imagine that fear in the mind of child.

When he was six I finally decided to have blood work drawn on him that tested further for the allergy. His results came back at the highest possible level. We were heartbroken. We had hoped he was one of the few that outgrow this allergy but he was not. It was here to stay. Not only was it here to stay, it was bad. The doctor made sure that we understood. If he were to have peanut, he would not get a rash, he would, more than likely, have an anaphylactic reaction.

The problem with peanut allergy, like many other food allergies, is that it is never completely avoidable. It can be hiding anywhere at any time. Foods can easily be “cross-contaminated” in a factory when several different items are made on the same equipment. Workers can cross-contaminate in a restaurant. If a worker touches something with peanut in it, then touches your food, you can be exposed. The tiniest amount of exposure can bring about a reaction. Imagine a kid in the movie theatre eating a Reese Cup and wiping his hand across the fabric seat. Then, my son comes along and touches the seat, while he eats his popcorn. It can be fatal. Imagine that you just ate peanuts and then kissed my son on the cheek or touched his face.

As a mother, it is on my mind at all times. Every food label in my home has been mulled over so he is safe here. But, when we are anywhere else, safety is never felt. He is now eight years old and is crushed by the weight of fear. We have seen him have full-on panic attacks in restaurants when he got a little choked, thinking he couldn’t breath because he was exposed to a peanut. Everywhere he goes, its on his mind too.

If he is having problems with environmental allergies, it often get confused with a possible peanut exposure.

He played basketball this season. I could tell on the court that he was “in his head.” Sometimes, he withdraws and is quiet which is definitely not his normal personality. He later told me he worries about things like whether or not someone ate peanut butter then touched the ball. He concentrates on not touching his face which consumes his thoughts.

This is the most heartbreaking part of it all. It is the anxiety and fear my son feels.  We don’t care that we can’t have peanuts. These years are so vital in his development. His personality has literally been shaped by this allergy. In 6-8 years, he will no longer be at my side 24 hours a day. I won’t be able to monitor every bite that goes into his mouth. I wont be able to wipe down tables and scan the room for possible culprits. What if he kisses a girl or eats the wrong brownie at a friends house?

So, here we are. Life has brought us to this crossroad. My eight year old has a severe peanut allergy and now there is possibly a treatment when there had not been one before. For years, the only treatment has been avoidance. But, now, there is something new, a possibility. Oral Immunotherapy. The treatment isn’t without risk though. It involves actually feeding your child the food they are allergic too! Can we do this? Can we handle this pressure?

More to come on our steps towards Oral Immunotherapy, aka OIT.

tug-of-war.

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There is a war waging for our hearts, to shut them down and disable those who love Jesus.

I feel it stronger than ever before. I went away for a women’s retreat and found God in a place I hadn’t visited for a while. Not a physical place, but a place of depth within my soul. I found Him waiting for me for to crawl through the haze and reach Him.

There is power in people, in bodies who hold the same spirit. When we are together and dig down deep, our spirits unite and God seems to swell up and make Himself known in a way no one can deny. There is strength in unity and love. There is strength in wanting and needing God. There is strength in honesty and humility.

We found God. Anyone who was there can confirm that their hearts melted into one big pile of butter!

That is where I am finding myself now. I am butter before God. The moment I begin to worship Him, whether in my car or church, read the Bible or pray, there He is. I feel Him close and my eyes continue to instantly well up with tears. It’s like all that “stuff” that was between Him and I has diminished. I don’t have to work as hard to find Him. I don’t feel like He is a million miles away. He is close and I trust Him.

But, I have a feeling that something doesn’t like it.

I feel a strong pressure in my weaker moments to collapse, to give my thoughts back to the one who confines them. It feels like spiritual tug-of-war. Satan sees power in the hands of those whose hearts and minds move freely within God’s will. My days, since being home, have been harder than ever. I’ve thought things like “I should have just stayed in bed today.” On the other hand, my moments with God have been richer than ever. He is worth it. I choose to fight this fight against the one who devours. Our fight is not against flesh and blood, but against rulers, against authorities, against the powers of this dark world and against spiritual forces of evil. (Ephesians 6:12)

“I lift up my eyes to the mountains, where does my help come from? My help comes from the Lord, the Maker of heaven and earth. He will not let you stumble; the one who watches over you will not slumber.” Psalm 121:1-3

If this is you, I encourage you to fight. Lift your eyes up and realize where your help comes from! He is worth it! 

HLC Women’s Retreat

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In His hands are the depths of the earth, and the mountain peaks belong to Him. Psalm 95:4

HLC Women’s Retreat starts TOMORROW! 

We are heading to the beautiful Blue Ridge Mountains of Georgia! From the moment the retreat was scheduled, I began praying that every women who was meant to be there would find a way to make it happen! Every time someone added, I began dreaming about all the things God had in store for them.  So, for those of you who are going, it is meant to be!

God has something fantastic waiting for you this weekend!

XOXO

See you there!

Margie