We eventually got on an elimination diet (no wheat, dairy, soy, corn, tomatoes, eggs, or nuts), but still no allergy testing was done. After months of follow up visits, Doctor number three insisted that I stop breastfeeding to more strictly narrow his diet. I still regret following this advice as I now believe that she doubted my ability to follow the necessary food plan. At the time, I felt a deep sadness that there was something wrong with me, and that I was passing that on to him through my breastmilk. Stupid.
In June of 2012, Easton had his first full blown allergic reaction. Hives began to bubble up around his mouth and on his hands, and we immediately rushed him to an urgent care. They gave him a large dose of Benadryl and monitored him for about an hour. The next day we made an appointment with an allergist. This was the day we began to get real answers. This was the day we met Dr. K. She put Easton on a low antihistamine regimen and ordered blood work to test for IgE reactions to the most common allergens. The first round of tests showed reactions to dog and cat dander, peanuts, egg whites, fish, and dust.
Dogs? That meant our dogs. Pepper and Sparky, our two beloved miniature dachshunds. There was nothing to do but find them new homes. This was our child we were talking about, but that didn't make losing the dogs easier, it just made it the only possible choice. Dr. K encouraged us that we would see improvement with the dogs out of the house, and with heavy hearts, we found them new families. We also made some other changes to help reduce dander such as replacing our sofa, adding air purifiers, enlarging our home's air filtration ducts and creating an allergy-free zone in the playroom. Dr. K was clear that dander was just about impossible to remove even with careful cleaning, and that it would take several months for our home to be dander free. In the meantime, Easton stayed primarily upstairs (where the dogs had not been allowed), and we created a large gated area with a plastic sheet covered with a blanket to keep him off of the carpet.
We did see some reduction in his eczema, but not nearly like we had hoped. We had reintroduced wheat (in the form of Cheerios) and we were trying out cow's milk. Neither went well. The eczema began to ramp back up, and he was suffering with regular bouts of tummy trouble. We cut the wheat and dairy again and tried coconut milk instead. No go. He vomited it up every time. Dr. K suggested a specialized hypoallergenic formula called Alimentum. The liquid formula is the only product on the market free of any of the commonly offending proteins, and boy are they proud of it! It smells utterly inedible, but with a little coaxing, we managed to get Easton used to it. The only problem with this was cost. Oh. My. Goodness. This stuff is expensive! Providing the standard 32 oz. per day was costing around $300 per month in addition to expensive allergy testing and copay after copay. Beyond that, we were also seeing development milestones being missed, and we were concerned about how the battle with malabsorption would affect his overall growth. Thankfully Dr. K and her staff worked diligently sending in forms, paperwork, and explanatory letters to our insurance company regarding Easton's need for this formula. As a result, after a few months of red tape and several hundred dollars, we now purchase his formula through our pharmacy, and it is covered by our insurance with a copay. PRAISE GOD!
At this point we began seeing Easton gain weight and energy. We started seeing a speech therapist to work on his lack of communication. At 15 months he was not pointing to locate, following simple commands, or using more than three individual words. As we saw his body healing, we also saw his bright beautiful mind and personality come to the forefront. His vocabulary exploded, and his balance and coordination improved as well. We were fortunate to develop a wonderful relationship with his early childhood specialist, Ms. Linda, and she became a beloved part of the family.
With so much to celebrate, we also struggled with frustration. Months and months went by, and we couldn't understand why after removing the dogs and all offending foods from his environment, we were still seeing chronic reactions ranging from hives across his cheeks to even persistent and violent vomiting. We spent months in frustration, confusion, and desperation. We wrote down everything he ate, and we watched him carefully at every meal. Coconut milk. Avocado. Tomato. Grapes. Zucchini. Paprika. Chili powder. Bell pepper. Peas. Mango....and on and on and on. It seemed like the "random" reactions would never stop, and each time Easton's body had to fight one of these reactions, we lost ground on his developmental progress. As a parent, it is simply heartbreaking.
Then on March 8, 2013, Easton experienced the full brunt of a severe allergic reaction. His face and hands were speckled and splotchy, but because he was off of his antihistamines in an effort to prepare for a skin prick test, the nurse at the allergist's office recommended just keeping an eye on it and giving antihistamines if I felt it was more than we were willing to see him endure. At that point we were unsure if it was an acute reaction or broader reaction to environmental allergens. He began to act strangely after lunch, climbing up and down off of my lap in a frantic, fearful way. I just knew he wasn't okay. I went ahead and gave the prescription equivalent of Benadryl, but the cascade of histamine was already on a roll. He began vomiting over and over. I called Dr. K, and she stayed on the phone with me as I administered the EpiPen into his thigh for the first time. Perhaps the scariest part of this was that my son who usually fought me with every diaper change barely moved as I pressed the injection into his leg. He was simply too weak. We rushed to the emergency room, both covered in vomit and crying, and the staff there immediately took him to a room. They stripped his clothes off and attached monitors to his toe and chest. Dr. K had asked me to call her when we got there so that she could speak to the doctor who would be treating him. They decided to give him two more injections - an antihistamine (he never did keep down the oral antihistamine), and steroid - to help stop the chain reaction ripping through his body. The nurse who had filled out the paperwork I was too shaky to do myself brought us a warm blanket and a bottle of water, bless her, and Easton cried until he fell asleep on my chest. My husband, Allan, who had come rushing from work, arrived and we just stared at each other in disbelief. We always knew it was a possibility, but we somehow never really thought we would be there.
This began another round of consultations with the allergists in Dr. K's office. What was it this time? What else should we test for? What do these foods have in common? We all began searching for answers. It was then that I began to search medical journal articles and food allergy forums for myself. There had to be something to this. Oral allergy syndrome? Chemical sensitivity? What were we missing? I came across some medical journals that sited several of the foods Easton had reacted to - each of these foods were either "high" or "very high" in salicylates. This is a natural preservative found in many plants in varying levels. It is also used as "salicylic acid" in a range of cosmetics and pharmacological uses. Aspirin is straight up acetylsalicylic acid usually derived from Willow bark. Aspirin allergy is rare. Being intolerant to salicylates in food is even less common, but everything fit, so I gathered some medical journal articles, our food journal, and a list of foods divided by salicylate content, and I made an appointment with Dr. K. Now, let me tell you, I was NERVOUS. This is a woman who I greatly respect and appreciate, and I felt like a crazy person for walking into her office with a medical theory, but after plenty of prayer, talking to Allan and a another good friend, I felt that I had an obligation as my child's advocate to at least bring this to her attention.
Dr. K did not disappoint. She listened carefully while her nurse made copies of everything I had brought. She nodded patiently and smiled when I attempted to reassure her that I have the utmost respect for her and hoped I wasn't being obnoxious. She said, "I have a great deal of respect for you too, and I know you're intelligent. Of course I want to hear what you think." (!!!!!) A doctor without a massive ego!! This had not been my experience in the past. She is a truly special person. She asked for a week to research, and said she would call me with her thoughts. YAY!
The next day, after just six short months of weekly therapy with an early childhood specialist, Easton was determined to be too far AHEAD to continue in the program. How great is our God?! Don't get me wrong, He is great and mighty and sovereign right in the middle of the worst moment of our lives, but when you see a child go from being basically non communicative to speaking in sentences, using pronouns, tenses, plurals, and following instructions easily, in just 6 short months, you have to praise the Creator for his goodness!
Well, Dr. K did call me back. One week later she called to say she was fairly certain I had cracked the code of Easton's persistent reactions. We officially added to his diagnosis of allergens - foods high in salicylates. This left us with the food plan we are on now. It's very limited, and very bland, but so far Easton is doing well. We hope to see his system calm enough to be able to get an accurate blood test and possibly even a skin test. We will likely be on this food plan - I don't like the word "diet" - for about three months before even attempting any food challenges. In the meantime, we are taking on the challenge of strict avoidance, maintaining our joy in the Lord, and recording our family's journey. We are optimistic that he will continue to thrive, and we are eager to chronicle this time as one of learning, struggling, crying, praying, and praising God for His great provision.
May 11, 2013
At this point we began seeing Easton gain weight and energy. We started seeing a speech therapist to work on his lack of communication. At 15 months he was not pointing to locate, following simple commands, or using more than three individual words. As we saw his body healing, we also saw his bright beautiful mind and personality come to the forefront. His vocabulary exploded, and his balance and coordination improved as well. We were fortunate to develop a wonderful relationship with his early childhood specialist, Ms. Linda, and she became a beloved part of the family.
With so much to celebrate, we also struggled with frustration. Months and months went by, and we couldn't understand why after removing the dogs and all offending foods from his environment, we were still seeing chronic reactions ranging from hives across his cheeks to even persistent and violent vomiting. We spent months in frustration, confusion, and desperation. We wrote down everything he ate, and we watched him carefully at every meal. Coconut milk. Avocado. Tomato. Grapes. Zucchini. Paprika. Chili powder. Bell pepper. Peas. Mango....and on and on and on. It seemed like the "random" reactions would never stop, and each time Easton's body had to fight one of these reactions, we lost ground on his developmental progress. As a parent, it is simply heartbreaking.
Then on March 8, 2013, Easton experienced the full brunt of a severe allergic reaction. His face and hands were speckled and splotchy, but because he was off of his antihistamines in an effort to prepare for a skin prick test, the nurse at the allergist's office recommended just keeping an eye on it and giving antihistamines if I felt it was more than we were willing to see him endure. At that point we were unsure if it was an acute reaction or broader reaction to environmental allergens. He began to act strangely after lunch, climbing up and down off of my lap in a frantic, fearful way. I just knew he wasn't okay. I went ahead and gave the prescription equivalent of Benadryl, but the cascade of histamine was already on a roll. He began vomiting over and over. I called Dr. K, and she stayed on the phone with me as I administered the EpiPen into his thigh for the first time. Perhaps the scariest part of this was that my son who usually fought me with every diaper change barely moved as I pressed the injection into his leg. He was simply too weak. We rushed to the emergency room, both covered in vomit and crying, and the staff there immediately took him to a room. They stripped his clothes off and attached monitors to his toe and chest. Dr. K had asked me to call her when we got there so that she could speak to the doctor who would be treating him. They decided to give him two more injections - an antihistamine (he never did keep down the oral antihistamine), and steroid - to help stop the chain reaction ripping through his body. The nurse who had filled out the paperwork I was too shaky to do myself brought us a warm blanket and a bottle of water, bless her, and Easton cried until he fell asleep on my chest. My husband, Allan, who had come rushing from work, arrived and we just stared at each other in disbelief. We always knew it was a possibility, but we somehow never really thought we would be there.
This began another round of consultations with the allergists in Dr. K's office. What was it this time? What else should we test for? What do these foods have in common? We all began searching for answers. It was then that I began to search medical journal articles and food allergy forums for myself. There had to be something to this. Oral allergy syndrome? Chemical sensitivity? What were we missing? I came across some medical journals that sited several of the foods Easton had reacted to - each of these foods were either "high" or "very high" in salicylates. This is a natural preservative found in many plants in varying levels. It is also used as "salicylic acid" in a range of cosmetics and pharmacological uses. Aspirin is straight up acetylsalicylic acid usually derived from Willow bark. Aspirin allergy is rare. Being intolerant to salicylates in food is even less common, but everything fit, so I gathered some medical journal articles, our food journal, and a list of foods divided by salicylate content, and I made an appointment with Dr. K. Now, let me tell you, I was NERVOUS. This is a woman who I greatly respect and appreciate, and I felt like a crazy person for walking into her office with a medical theory, but after plenty of prayer, talking to Allan and a another good friend, I felt that I had an obligation as my child's advocate to at least bring this to her attention.
Dr. K did not disappoint. She listened carefully while her nurse made copies of everything I had brought. She nodded patiently and smiled when I attempted to reassure her that I have the utmost respect for her and hoped I wasn't being obnoxious. She said, "I have a great deal of respect for you too, and I know you're intelligent. Of course I want to hear what you think." (!!!!!) A doctor without a massive ego!! This had not been my experience in the past. She is a truly special person. She asked for a week to research, and said she would call me with her thoughts. YAY!
The next day, after just six short months of weekly therapy with an early childhood specialist, Easton was determined to be too far AHEAD to continue in the program. How great is our God?! Don't get me wrong, He is great and mighty and sovereign right in the middle of the worst moment of our lives, but when you see a child go from being basically non communicative to speaking in sentences, using pronouns, tenses, plurals, and following instructions easily, in just 6 short months, you have to praise the Creator for his goodness!
Well, Dr. K did call me back. One week later she called to say she was fairly certain I had cracked the code of Easton's persistent reactions. We officially added to his diagnosis of allergens - foods high in salicylates. This left us with the food plan we are on now. It's very limited, and very bland, but so far Easton is doing well. We hope to see his system calm enough to be able to get an accurate blood test and possibly even a skin test. We will likely be on this food plan - I don't like the word "diet" - for about three months before even attempting any food challenges. In the meantime, we are taking on the challenge of strict avoidance, maintaining our joy in the Lord, and recording our family's journey. We are optimistic that he will continue to thrive, and we are eager to chronicle this time as one of learning, struggling, crying, praying, and praising God for His great provision.
May 11, 2013
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