I know that it has been a month since my last blog and that is far too long to go without new information. I am busy working on some new pages that I hope will be of help to many of you starting out or those of you well on your journey. In the mean time, if you have questions that you do not have answers to, want an opinion on something, or you have an opinion/product that may help others please drop me a line and I will do my best to get the answers for you or to share information that may be helpful to others like you or your family members. Thank you for your ongoing patience with this website and its creation. With five children and a never-ending to-do list, this sometimes gets pushed to the back burner, but I really want this to be a place that people can go to get information, help, and community that understands what you and your family is going through. It means a lot to me to share what experiences we have had as a family and it is my true hope that this space can be used to bless others like us.
So, my tip of the day today is for those of you who have food and/or environmental allergies, medicinal cross-checking. I do not mean cross-checking for interactions with other medications that you or your loved one are taking (which I will say is important!!), but this post is about cross-checking medicines with allergens that you or your loved one have. This one hits home for me because it was not something I really had even thought about, in hind sight I cannot see how it was not more important or relevant earlier.
First, I must say that we love our allergist team and they are amazing but they see our children for limited visits throughout the year and that time is short, so there is a lot going on during these appointments. My oldest daughter has asthma, eczema and food/environmental allergies. Those of you familiar with asthma will know about this; my daughter had been prescribed a maintenance inhaler which was to be taken daily and her rescue inhaler which was for use during emergencies. None of her medicines interacted with one another, but she seemed to have a reaction to her maintenance inhaler when she would take her medication each day. It was not a severe reaction, but it was noticeable. When she intakes an allergen, she typically becomes very flush, becomes itchy and sometimes complains of an itchy throat with certain ones. I could not place what was going on until I read what her inhaler consisted of. Much like many aerosol cans (like non-stick spray), her inhaler used soy lecithin. Most of the research I have read says that most people will not react to this, but I know what I saw in my daughter. I alerted our allergist to what was going on and they have since put her on a new asthma maintenance medication that does not have soy as an ingredient. I am pleased to say she is doing well on it and we are happy with the results. I know that this will not be the case for everyone, but it is better to be safe in these situations, than sorry. I am thankful that we now are more vigilant in label reading of all products we use or consume.
My hope in writing this, is that you will not limit food/other allergen label reading to just food products, but that you be cautious of the health and beauty products you purchase, as well as your medicine (prescribed and OTC) and your vitamin supplements of choice. I trust this will be a healthy benefit to you and your family.
Can I say Ener-G egg replacer is amazing?!? This is my go-to when I am baking for my daughters. I have two girls with an egg allergy and this product is fantastic. My baked goods are moister and taste absolutely wonderful. My newest favorite thing about Ener-G egg replacer is my realization that it actually will whip up light and fluffy similar to egg whites to make a lovely angel food cake. Fair warning, your cake will not rise quite as high as a normal angel food cake, but it will rise and it will be light and delicious. So if you have an egg allergy, try this product out, it will make a wonderful addition to your pantry. If you cannot find it at a local store, you can find it on Amazon.
This one is at a great price and less expensive than I can purchase it at the store.
Do you or a loved one have eczema? Have you ever had experiences with do-gooders trying to help you with endless product suggestions? Or have you possibly had a negative experience with stares, whispers or blunt questions or comments? Or maybe you have had a positive experience where someone goes out of their way to let you or your loved one know how incredible they are? I have run the gamut of experiences with my children, some amazingly beautiful and others amazingly hurtful.
Being that this disease is so very visible to the public, it is difficult to hide. My daughters and I have received many looks and questions over the years, from well-meaning to downright rude. A typical question would be, “Did you fall off your bike and get road rash”? I really want to reply, (insert sarcastic tone) “Yes, she somehow managed to get road rash on almost her entire face, hands, all of her legs and feet. It was crazy, you should have been there.” But, I usually try to be polite and inform others to what it is my daughters have and how difficult it can be to treat.
One of the worst experiences was during a particularly bad eczema episode with my youngest daughter (who was four at the time) while we were traveling to my mother’s home and stopped at a gas station to use the restroom. I should preface this story with one of the ways we would handle our daughter’s eczema during her bad episodes. We will put hydrocortisone on the rash, followed by a moisturizing lotion and then socks with the toes cut out to cover up forearms. This helped keep debris and other possible infection causing materials from getting on the skin. This was a concern, when we would travel and be in contact with foreign places and germs. As we walked into said gas station, a less than polite woman asked if she was a burn victim. I felt so angry at that question, I know she really had no idea what was going on with my daughter, but in the heat of that moment all I really wanted to do was throat punch this woman. She had violated our space, our privacy and our calm. My daughter was used to stares and the usual questions, but not this one. It was a legitimate question, that unfortunately was insensitive and cutting. It made my girl question her normalcy, her beauty and her worth. It was that day that I realized despite my deep love for her, I cannot protect her from everyone. Fortunately, this is not the norm, but there are enough tactless people in the world to make this momma worry for the well-being of her babies.
On the contrary, one of the best experiences we have ever had was with a gentleman who was covered head to toe with tattoos and he stopped my daughter and asked her if she knew just how beautiful she is. She replied “Yes, I do”. That was one of the kindest, sweetest moments that has ever happened to her. It astounds me that someone outside of our circle, took the time to remind my daughter that she is beautiful and that the self-confidence we have instilled in her is intact. That encounter was such a blessing for her and for me. It was remarkable.
It is my wish that you have more of the great experiences than awful ones. But even in the awful ones, there is room to replace ignorance with information, ugliness with beauty and insensitivity with kindness. I hope that you will share your experiences with me and with others so that we can all learn more about this disease and how it affects those who have it and the people who love those who have it.
Have you ever sat back, you know all that free time parents seem to possess, and just pondered “How did I get to this place, how did I get here?” I am sitting here this morning, watching my three girls eating breakfast, waiting to fully get into our home-school day and I am wondering how we got here, from where it is we started. My husband, my two boys and I were living a normal life when everything changed with the arrival of a beautiful blue-eyed, blonde haired baby girl who altered everything that was normal and easy, into something very different. What we transitioned into was a difficult, frustrating, yet beautiful adventure that I could not have imagined would transform my life. Her journey fraught with difficulties due to eczema, asthma, and our never-ending food adventures (maybe misadventures is more apropos) could be an amazing way to connect with others and be a help in my church and in my community. I am so blessed with my two food allergen, eczema plagued daughters, one who is asthmatic. These two beautiful people brought out the protector in me, a drive to know as much as I could to protect them and the ability to help others I have met along the way that are also navigating this sometimes very trying journey. If you are also on this journey; whether at the beginning, at it for some time, or an old pro in any of these individual issues or all of them (or sometimes even more than this), welcome. This can be a place for all of us; to be able to find help, a safe place to be angry, sad or scared about a diagnosis, and a place to encourage and strengthen one another as we travel on this journey together. So then on those days like today, when I find myself pondering those life questions, I can look around my kitchen table and see the faces of my beautiful children that remind me exactly how it was I got here…and I smile.
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