Wow we've had a rough week.
Once again, Gabriel and I are incredibly blessed to have such an amazing auntie and uncle to support him when the going gets tough!
Gabriel's allergist reccommended that Gabriel be homeschool in October of 2010. I resisted, but after ongoing reactions from school, I realized that homeschooling would be the safest alternative.
This brings us to today. As a single income household, It can be a struggle, affording at home care (which is significantly more expensive than daycare), but we manage. We have a wonderful Au Pair (nanny for another country) living with us for the year. She understands Gabriel, is sensitive to his needs, and cautious with his health. So far, so good!
In some recent phone calls to our local school district, I've learned that 'homeschooling' and 'the doctor said I need to homeschool' are significantly different. Homeschooling means that you choose to keep your child home, therefor are responsible for their education, curriculum, and progress. When the doctor says it's a must, our school district provides curriculum, a teachers instructions 5 hours a week, and all the benefits that are offered in public school, that my tax dollars pay for. That god for the ADA and for the schools efforts in making this possible!
IN order for our Allergist to comfortably declare in writing that Gabriel must be comfortable, he insisted another round of testing. This time, we tested his skin for contact allergens. This does not test reactions to foods you eat, only reactions induced by touching. Unfortunately, this test lasts 4 days.
The nurse- who has been applying Gabriel's allergy tests for 5 years now- Applied 20 patches of different foods to Gabriel's back, and secured it with paper tape, because Gabriel's skin is so sensitive. Instructions were to come back in 48 hours for a reading, and then in 72 hours for a second reading. Before we made our way out of the office, Gabriel squealed at how terribly itchy he was.
Day one- Doctor OKay'd benedryl during this test. Thank goodness. Gabriel slept a lot this day. Woke up, itched and scratched, and went back to sleep. He was uncomfortable, and I empathized.
Day two- Gabriel was itchier, so I upped the benedryl dose. (I hate having to do this.) I hated the idea of going to work. I know he's tough, his tolerance is high, and grins and bears it as best he can. But Mommy could tell he was uncomfortable. Hours later I get a phone call at work. Gabriel can not stop screaming. Not crying, whining, or whimpering. He is screaming in pain and discomfort. Knowing what his tolerance was like this made my sister more worried. He was so focused on itching, and wiggling it looked like he was seizing. I called the doctor and he approved more benedryl. No relief. I felt guilty, and my sister described this as torture. I told her to remove the test. His back was welted and blistered. I came home. The loving auntie was in sympathetic tears. Gabriel was beginning to feel better.
Day three- The nurse reviewed the test today. It was removed 14 hours early.The test was only left on for an unaccurate 40% of the required time. She noted a significant reaction to oat. Really Oat? Oat, like in oatmeal bath, Aveeno cream, shampoo, handsoap, dog food, tortoise food, and cosmetics. The most significant blistering was from the tape that the test was applied with. Hypoallergenic, adhesive and latex free paper tape.
Day four- Final read. Doctor reviewed the results and reminded me of the importance of avoiding contact with any of the reactants. We talked about tape, and other options. I asked about alternatives in the case of blood draws, his annual surgery, and IVs. The only way to test for these tapes would be to perform another patch test, that would have to be attached with tape. No thank you, we'll pass.
The Allergist wrote a note, prescribing Gabriel to be homeschooled. We walked away as Gabriel skipped down the sidewalk, and showed off his sticker. It was over, and he couldn't have been happier.
Watching him climb up the bike rack, and jump back down onto the sidewalk, I was reminded of how little we can tell about someone by looking at them.
Saturday, July 30, 2011
Sunday, July 24, 2011
Are we working against each other?
My sister told me a story today. She was at a social event a met a mother, and a vibrant young 7 year old who reminded her so much of my Gabriel. In talking, my sister learned that not only did she have a similar vibrant spirit, this little girl suffered from allergies and anaphylaxis like my Gabriel, as well.
My sister was so excited to find a friend for me. Someone to share recipes with. Someone to ask for advice, or recommendations about doctors, meds, or diet. Someone to share 'safe' place to go in public. Someone to share my fears with, and most importantly, another child for Gabriel to relate to.
As my sister told me about the family she met, she sounded excited. She was happy for me, and sincerely thought that this could be great.
As she continued, I was quickly disappointed, but not surprised....
It sounded so much like the conversations I often have.
In public, I might mention "Oh I'm sorry, he can't (have, touch, go). Gabriel is allergic."
More often then not, the response I get from the stranger at the store, park, or event that we are at is "oh, yea, my (nephew, sister, dad,..) has allergies, really bad, though."
Typically, I nod and smile and say "wow Im so sorry"
The response that I hear most often? "Oh Yea. (he, she) is allergic to EVERYTHING. (he, she) has an inhaler, and stuff. Yea, its really bad, like really bad."
My sister continued to tell me about the family she met. My sister was so excited to have a common ground for this mother and I, that she shared "my nephew, he has eosinophillic esophagitis, you should talk to me sister."
The answer she got? "oh, well, we got Lucky. We have the total package. She also has asthma and eczema."
And again, my sister was so excited to share "You should read my sisters blog! She shares recipes, tips,...it would be great for you to be in touch"
I will not quote the final comment, but I can tell you that it was a bit negative.
I am not, by any means, intending to mock anyone. I agree, allergies can be very bad, and more often then not it can feel like we are allergic to everything. I don't care what foods are worse to be allergic to, and I will never care who is allergic to more. Listing diseases and symptoms will never be something I try to do, and competing for the worst case is never ever something I care to be a part of. Why, so often, does it feel like other are competing?
I write to educate, and spread awareness. Like cancer, Alzheimers, or PID, awareness and education is key. The more people aware, the more research, the more research, the more solutions. Education and public awareness also come with public sensitivity, options, and more safety for our children. I am not ashamed to share about Gabriel's health, because I'd like to spread awareness. I am happy to write all that I've learned through my own trials and mistakes, to help educate. I get excited when I meet another mother that I could possibly share recipes, safe babysitters, and great doctors with.
If you or someone you know has allergies, or asthma, guess what? We are on the same team. I empathize for you, and I care about your child's health and safety. I want to hear about your experiences, and I will listen to your fears. We are on the same team. Only when we feel like we are, will we begin to make significant progress in awareness and public education.
Then, maybe someday, will the airlines finally stop serving peanuts.
My sister was so excited to find a friend for me. Someone to share recipes with. Someone to ask for advice, or recommendations about doctors, meds, or diet. Someone to share 'safe' place to go in public. Someone to share my fears with, and most importantly, another child for Gabriel to relate to.
As my sister told me about the family she met, she sounded excited. She was happy for me, and sincerely thought that this could be great.
As she continued, I was quickly disappointed, but not surprised....
It sounded so much like the conversations I often have.
In public, I might mention "Oh I'm sorry, he can't (have, touch, go). Gabriel is allergic."
More often then not, the response I get from the stranger at the store, park, or event that we are at is "oh, yea, my (nephew, sister, dad,..) has allergies, really bad, though."
Typically, I nod and smile and say "wow Im so sorry"
The response that I hear most often? "Oh Yea. (he, she) is allergic to EVERYTHING. (he, she) has an inhaler, and stuff. Yea, its really bad, like really bad."
My sister continued to tell me about the family she met. My sister was so excited to have a common ground for this mother and I, that she shared "my nephew, he has eosinophillic esophagitis, you should talk to me sister."
The answer she got? "oh, well, we got Lucky. We have the total package. She also has asthma and eczema."
And again, my sister was so excited to share "You should read my sisters blog! She shares recipes, tips,...it would be great for you to be in touch"
I will not quote the final comment, but I can tell you that it was a bit negative.
I am not, by any means, intending to mock anyone. I agree, allergies can be very bad, and more often then not it can feel like we are allergic to everything. I don't care what foods are worse to be allergic to, and I will never care who is allergic to more. Listing diseases and symptoms will never be something I try to do, and competing for the worst case is never ever something I care to be a part of. Why, so often, does it feel like other are competing?
I write to educate, and spread awareness. Like cancer, Alzheimers, or PID, awareness and education is key. The more people aware, the more research, the more research, the more solutions. Education and public awareness also come with public sensitivity, options, and more safety for our children. I am not ashamed to share about Gabriel's health, because I'd like to spread awareness. I am happy to write all that I've learned through my own trials and mistakes, to help educate. I get excited when I meet another mother that I could possibly share recipes, safe babysitters, and great doctors with.
If you or someone you know has allergies, or asthma, guess what? We are on the same team. I empathize for you, and I care about your child's health and safety. I want to hear about your experiences, and I will listen to your fears. We are on the same team. Only when we feel like we are, will we begin to make significant progress in awareness and public education.
Then, maybe someday, will the airlines finally stop serving peanuts.
Thursday, July 21, 2011
Creative Cooking
I've always been a fairly creative person. I choose an artistic field for my profession, and I always favored art classes in school. Never would I have imagined using creativity in this way!
Cooking without specific ingredients can either leave you with a crumbly mess, or force you to think out of the box.
After spending the morning concocting a Hawaiian Sweet Bread, and a Mango Cake with out milk, butter, flour, eggs, corn (corn is also in baking powder), soy (or bean flour), vegetable oil, shortening, .....ect ect ect.... I've decided to share my most successful discoveries with you!
Milk and cream- Soy milk is a no-no for us. So is Almond milk. If you can use either of those, I hear they work great. Rice milk has proven to be a bit too runny. The most successful substitute I've used for milk is coconut milk. Coconut milk is a mixture of coconut water and pureed meat. It is think and creamy. Even in pasta sauces, you would guess its from a fruit! The coconut flavor is very mild, and easily disguised by other ingredients.
Butter-When avoiding corn milk and soy, it can be impossible to find a margarine that is safe. For a while, I used Spectrum Organic all natural vegetable shortening. It is made from pressed palm oil. This shortening is pricey, but works well when recipes call for butter or shortening. My favorite substitute is coconut oil. Coconut oil is a natural superfood with hundreds of uses and health benefits. It's loaded with fatty acids, and amino acids (great for someone who cant take fish oil!) Coconut oil is a solid at room temperature, so it serves as a great butter substitute. It melts at 80 degrees. For baking, this can cause some runny-ness. I use coconut oil whenever possible. It, too, can be very pricey. I think it is well worth the expense!
Egg- I've faced the facts. nothing, nothing substitutes an egg. Somethings get close, but nothing will whip like an egg white, that for sure. In baking, I have 2 go to egg replacers. One is Flax seed. Miz flax seed (also, huge for health benefits!) with enough water to make a paste. With in minutes, this will turn into a gel that works well as an 'egg'. Flax seed has a nutty, fibery taste. I love to use it in breads, and when flouring meat. For cakes and pastries I prefer Ener-G egg replacer. It is the only egg replacer that I've found in stores that does not contain another ingredient that we must avoid. It is a powder that is mixed with water. It is tasteless. Both of these substitutes will leave batters and doughs looking runny. Don't worry, they will still bake into a solid cake! I have that applesauce works well, personally, I do not prefer it.
Baking Powder-Hain gluten feee baking powder is the only that I've found that doesn't contain corn. For years, I tried to skip the baking powder and it left recipes flat and dense. I found this at Nugget, and Whole Foods.
Flour- I use EVERYTHING! Before Gabriel had to avoid beans, I loved to use bean flours. For now, we use tapioca flour, tapioca starch, rice flour, brown rice flour, sweet rice flour, sourgum flour, potato flour, and potato starch. These can be very pricey. I've learned that the nearest Asian grocery store sells these for 1/4 of the price of anyone else. I have the most success mixing the flours together. Rice flour is a bit too heavy, potato flour is extremely light and dusty. The best recipes and textures have come from combinations of all the flours. In making sauces and roux I use potato starch, in breading for frying, I prefer rice. In baking, I always mix! Use the different textures and densities two your advantage!
Honey-Agave syrup, and brown rice syrup. I prefer agave syrup (extracted from cactus), but it, too, is pricey. Also, Agave syrup is a touch runnier than honey. Gabriel loves in on top of his 'pancakes.' Anything that can be topped with honey I splurge on! If I am baking, I use brown rice syrup. It's very sweet, and super sticky. Try diluting it until you get the right consistency.
bread crumbs- Corn flakes work great! If you, like us, must avoid corn try this: Rice Chex! The cereal has about 4 ingredients, so it's safe of all common allergens. Crush it up (if you prefer fine- or chucky, crush it to your preference). Chex are mild in flavor, so you can salt or season it when your recipe calls for flavored bread crumbs.
Tomato- Depending on the recipe I use both tomatillo, and pumpkin! Believe it or not, tomatillos are most closely related to gooseberry (not tomato!). IN sauces, salsas, and soups, it works well. It is a bit tangier than tomato, so sometimes it requires additional sweetener. Pumpkin on the other hand, is a bit sweeter than tomato. I add a bit on vinegar to make it most similar to the classic marinara sauce. I have used pumpkin to make BBQ sauce, Ketchup, marinara, meatloaf, goulash, chili, and anything that typically calls for the red fruit! I've fed lots of the concoctions to unsuspecting friends and family- and they had no idea that they were eating a Gabriel safe dish!
I've been playing in the kitchen for the last 5 years, and I hope that some of my horrible mistakes, can help save you from making them :)
Email me at Raquellauren@yahoo.com for other substitutes not mentioned here .
Cooking without specific ingredients can either leave you with a crumbly mess, or force you to think out of the box.
After spending the morning concocting a Hawaiian Sweet Bread, and a Mango Cake with out milk, butter, flour, eggs, corn (corn is also in baking powder), soy (or bean flour), vegetable oil, shortening, .....ect ect ect.... I've decided to share my most successful discoveries with you!
Milk and cream- Soy milk is a no-no for us. So is Almond milk. If you can use either of those, I hear they work great. Rice milk has proven to be a bit too runny. The most successful substitute I've used for milk is coconut milk. Coconut milk is a mixture of coconut water and pureed meat. It is think and creamy. Even in pasta sauces, you would guess its from a fruit! The coconut flavor is very mild, and easily disguised by other ingredients.
Butter-When avoiding corn milk and soy, it can be impossible to find a margarine that is safe. For a while, I used Spectrum Organic all natural vegetable shortening. It is made from pressed palm oil. This shortening is pricey, but works well when recipes call for butter or shortening. My favorite substitute is coconut oil. Coconut oil is a natural superfood with hundreds of uses and health benefits. It's loaded with fatty acids, and amino acids (great for someone who cant take fish oil!) Coconut oil is a solid at room temperature, so it serves as a great butter substitute. It melts at 80 degrees. For baking, this can cause some runny-ness. I use coconut oil whenever possible. It, too, can be very pricey. I think it is well worth the expense!
Egg- I've faced the facts. nothing, nothing substitutes an egg. Somethings get close, but nothing will whip like an egg white, that for sure. In baking, I have 2 go to egg replacers. One is Flax seed. Miz flax seed (also, huge for health benefits!) with enough water to make a paste. With in minutes, this will turn into a gel that works well as an 'egg'. Flax seed has a nutty, fibery taste. I love to use it in breads, and when flouring meat. For cakes and pastries I prefer Ener-G egg replacer. It is the only egg replacer that I've found in stores that does not contain another ingredient that we must avoid. It is a powder that is mixed with water. It is tasteless. Both of these substitutes will leave batters and doughs looking runny. Don't worry, they will still bake into a solid cake! I have that applesauce works well, personally, I do not prefer it.
Baking Powder-Hain gluten feee baking powder is the only that I've found that doesn't contain corn. For years, I tried to skip the baking powder and it left recipes flat and dense. I found this at Nugget, and Whole Foods.
Flour- I use EVERYTHING! Before Gabriel had to avoid beans, I loved to use bean flours. For now, we use tapioca flour, tapioca starch, rice flour, brown rice flour, sweet rice flour, sourgum flour, potato flour, and potato starch. These can be very pricey. I've learned that the nearest Asian grocery store sells these for 1/4 of the price of anyone else. I have the most success mixing the flours together. Rice flour is a bit too heavy, potato flour is extremely light and dusty. The best recipes and textures have come from combinations of all the flours. In making sauces and roux I use potato starch, in breading for frying, I prefer rice. In baking, I always mix! Use the different textures and densities two your advantage!
Honey-Agave syrup, and brown rice syrup. I prefer agave syrup (extracted from cactus), but it, too, is pricey. Also, Agave syrup is a touch runnier than honey. Gabriel loves in on top of his 'pancakes.' Anything that can be topped with honey I splurge on! If I am baking, I use brown rice syrup. It's very sweet, and super sticky. Try diluting it until you get the right consistency.
bread crumbs- Corn flakes work great! If you, like us, must avoid corn try this: Rice Chex! The cereal has about 4 ingredients, so it's safe of all common allergens. Crush it up (if you prefer fine- or chucky, crush it to your preference). Chex are mild in flavor, so you can salt or season it when your recipe calls for flavored bread crumbs.
Tomato- Depending on the recipe I use both tomatillo, and pumpkin! Believe it or not, tomatillos are most closely related to gooseberry (not tomato!). IN sauces, salsas, and soups, it works well. It is a bit tangier than tomato, so sometimes it requires additional sweetener. Pumpkin on the other hand, is a bit sweeter than tomato. I add a bit on vinegar to make it most similar to the classic marinara sauce. I have used pumpkin to make BBQ sauce, Ketchup, marinara, meatloaf, goulash, chili, and anything that typically calls for the red fruit! I've fed lots of the concoctions to unsuspecting friends and family- and they had no idea that they were eating a Gabriel safe dish!
I've been playing in the kitchen for the last 5 years, and I hope that some of my horrible mistakes, can help save you from making them :)
Email me at Raquellauren@yahoo.com for other substitutes not mentioned here .
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