Letters You Never Thought You Would Send

As I email this out to everyone, I am posting it here to read as well. Never in a MILLION years did I ever think I would have to send out a letter like this. I just cannot take the chance anymore. Everyone needs to be aware because I am tired. I am tired of telling his story. I am tired of being hyper-vigilant. I am tired of of all of this.

I know that I cannot be tired. I refuse.

But I can ease the burden some. I hope that by sending out this letter, it will do just that. Maybe only by one person, and that's okay. All it takes is one...


Seriously!

TinaMarie

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Dear family and friends,

Earlier this year, after Andante’s first birthday, we had him tested for allergies. Both his skin test and his blood test came back with the same results. Andante is severely allergic to casein (the protein found in all dairy), eggs, and peanuts/tree nuts, and yellow dye no. 4 & 5. He is also intolerant in different levels to soy, gluten/wheat, tomatoes, peppers, cats & latex.

If you remember seeing Andante in his first months of life, he had incredibly bad eczema, to the point of open sores and flakey skin. At that time, we did not know the cause was food allergy related. After completing an elimination diet, the Pediatrician and I determined at least one allergen was gluten/wheat, so we excluded all gluten from our diet, and made plans to have Andante tested after his first birthday. While I was trying to wean him, we gave him cow’s milk like most people do. He immediately had his first anaphylactic reaction. Thankfully a dose of Benadryl did the trick, and stopped his allergic reaction. After a call and a visit to the doctor, we were given an Epipen, which contains life-saving epinephrine, and an immediate appointment with the Allergist.

In late June of this year, Andante was mistakenly given a piece of rice cheese with his lunch. Unknowingly, the rice cheese has 2% of casein in it. Within a minute, Andante swelled up to double his size, with massive hives covering his body. After giving him a dose of Benadryl, which usually works, we had to administer his first Epipen – something we hoped we would never have to do. He was having an anaphylactic reaction to the casein. After administration of the Epipen, we were taken by ambulance to the hospital where we waited for 4 hours until Andante was out of the woods (See Sealing Our Fate post for picture taken during ER visit). When we were released, we were given a steroid medication to help bring down the swelling, which took the normal 4-5 days to completely disappear. Since then, we have had no incidences.

Because of Andante’s allergies, our lives have completely changed. We have radically changed our diets to exclude ALL foods that could adversely affect Andante. The silver lining in all of this is that we are eating the healthiest we all have ever eaten before. We have also had to remove ALL household products (shampoos, cleaning supplies, makeup, detergents, fragrances, etc.) that have any oils or extracts from the allergens. When we go places, we bring Andante’s foods or call the restaurant ahead of time to make sure they can accommodate his needs.

Another change to our lives comes from the way Andante reacts to his allergens. Not only is he anaphylactic to ingesting his allergens, he is also touch and odor reactive. This means if he smells roasting peanuts or eggs cooking, for example, he will react. If he is touched by the peanut, casein, or egg protein, he will react. The enormous amount of cross-contamination that could also harm him is something that we are constantly aware of, and very vigilant about.

His intolerances also cause digestive problems for him. While we are thankful they are lesser reactions, they still harm him. We have not tested him for tree nuts and shellfish (which, come to find out this week, is only one of a few things that Fernando is anaphylactic to), or cinnamon (which TinaMarie is anaphylactic to) yet because of his age and his already high intolerance.

The reason we are writing you is to implore you for your help and understanding of Andante’s life-threatening situation. While at first glance, he looks like a healthy, husky little boy who has an enchanting smile, he is a child that is severely threatened by the very things that sustain us. We want you to be aware and not offended when we may ask you not to pick up Andante, or kiss him, or give him something to eat. We are not trying to be upsetting or cruel; we are trying to help our son live a life as free from harm as possible.

When you are around Andante, we ask that you check with us before you do anything with him until it has become routine for you to follow some simple sanitization procedures to keep him safe.

• Please wash your hands with soap, or use an antibacterial wipe before touching or holding Andante, especially after having handled one of his allergens. Even though you may not have touched something directly, you could have touched a door handle that was touched by someone who was holding hands with someone else that just had an ice cream that dripped on to their hand and they only wiped it away with a paper napkin. Using a napkin alone will not take away enough of the protein to keep Andante safe. Remember, only 2% of the protein from the allergen is enough to send Andante into anaphylactic shock and to the hospital.
• Please wash your face with soap, or use an antibacterial wipe before kissing Andante if you have lipstick or face cream/makeup on that may have one of his allergens.
• If you have perfume on that has one of Andante’s allergens, please wash off where ever you have applied your perfume or refrain from picking up and cuddling with him.
• If you have eaten one of his allergens, please wash your hands and face with soap, or use an antibacterial wipe before touching or holding Andante, and please use mouthwash to rinse with before you hold or kiss Andante. If you can change your clothes, it is preferred, but we know this is not always a possibility. We are willing to take the small risk that there are proteins that have spilled onto your clothing while you were eating so that our son can enjoy your company. The hands and face need to be done because of the obviousness of an allergen’s protein being on them.
• Please do not give Andante anything to eat or drink unless you have checked with us first even if you have read the label. There are so many names that each of his allergens are listed as in different ingredients lists that we do not expect you to know them all. For example, Globulin indicates that there are eggs in the product and Ghee indicates that there is dairy, not to mention the unpronounceable names that we do not use on a daily basis that may contain an allergen. We still have to use reference charts ourselves to make certain we are not giving him something with his allergens in them. We also have to watch out for items that have been made/manufactured in a plant with his allergens. Some products may not have an allergen listen in the main ingredients, but that product may have been produced on lines or in the same factory as another allergen. Another concern lies with the botanical families of Andante’s allergens. The infamous lupini beans, or tremoços for our Portuguese friends, are so closely genetically related to the peanut that when ingested, the body thinks they are the actual allergen and it begins it’s attack, in Andante’s case, sending him into anaphylactic shock. During the OLM Festa a couple of weeks ago, my mother was watching Andante while the rest of us participated in the Festa Parade. She set Andante on the grass to walk around. He fell over once, his hands touching the ground. Before my mother had a chance to wipe him up, he touched his face. Almost instantly, she said, there were hives all over his face and his trunk. She gave him Benadryl and watched him closely until the girls, Nando, and I were done with the parade. She could not figure out what had caused the reaction, until she remembered me mentioning the lupini beans. She looked down and they were everywhere. Point proven… at least for her.
• Please refrain from giving Allegra and Aria any of Andante’s allergens, even though they are not allergic. The two sisters are extremely conscious of their brother’s allergies and are his greatest advocates. They are very conscious about their cleanliness around him, and while they can have things like cookies, it makes it very hard on them to eat something in front of him that he cannot have. They have expressed feeling guilty that they have to deny him. We ask that you please do not put our girl’s in this position because it is very hard on them.

It may seem very daunting, and it is, but once you have accepted the idea that if you do not follow these procedures, a child could react and die, it becomes a mission.

We also ask that when we are together, please do not be offended that we will be bringing Andante’s food with us. We also ask that if we are together for a meal that you have prepared, please not be offended if we do not serve our son from your table. Unless we can be assured that none of his allergen’s are present in the food served, we must bring our own for him. If the steps that we must take to ensure Andante’s safety trouble you and you do not wish us to attend a function, we completely understand and will not be offended. What we are asking is a lot, especially when asking it from those that do not have to live with it everyday.

Another important decision we need you to know about is the care of our son. Please do not be offended if we do not leave our child in your care even if we have left our daughter’s with you before. The close people around us here in Gustine that are willing to take on the education needed to handle a reaction, should Andante have one, are few but treasured friends, most of which have someone in the house that works in the medical field. They have taken with us a great leap of faith, ensuring us that not only can they keep him safe from his allergens; they can also handle a reaction while we are not there. We know the enormous weight it puts upon the shoulders of these people, which we are immensely grateful for. They can tell you how much knowledge and practical hands on work it takes to keep Andante safe. Because not everyone has this training, we cannot leave him with anyone, and it truly is nothing personal.

While there is a slim chance that Andante might grow out of his severe allergies, there is a possibility that he may not. He may even develop more. His illness truly is this severe. We are already looking into schools that may be able to accommodate Andante, or possibly even homeschooling him. Due to the severity of the situation, we are not willing to gamble with his life and we will take every measure necessary to ensure that he is safe.

We do not want to deny you a relationship with our son and we do want all of you to be able to enjoy the time you spend with him, but we have to make sure he is safe first and foremost. We thank you for taking the time to read such an extensive letter from us and hope that you will understand our intentions and our requests. We hope that all of you and your loved ones are well.

Kindly,

Fernando & TinaMarie