I first met Sally...well, I actually haven't ever met Sally in person. But Sally is one of my online friends. She contacted me shortly after Sophie Safe Cooking was published, because we have a common goal: to LIVE with food allergies.
At the time that Sally and I first "met" she was writing a blog called Aprovechar, in which she discusses the dietary changes she has made over the years, why she made changes, and the benefits she's experienced as a result. She has had other projects over the years as well, but her newest one is a culmination of all of those:
http://tilthforhealth.com/
As you explore Sally's new website, you will find beautiful and inspiring photography (did I mention that she's an artist, too?), stories of lives she's helped to change, and resources to help you change and improve your food world.
Thank you, Sally, for encouraging others, and especially encouraging me, on our continued journey through food!
Tuesday, August 24, 2010
Friday, August 20, 2010
Bandwagon
Most of the time, I don't really like to get on the bandwagon. I would rather ignore whatever the latest bandwagon is until I have time to research the topic and decide my own opinion. So it is with reluctance that I am getting on the Joel Stein Bandwagon.
Joel Stein? Who's that? Joel Stein is a columnist. He wrote a rather inflammatory column which was published in the Los Angeles Times in January, which opened with this line: "Your kid doesn't have an allergy to nuts. Your kid has a parent who needs to feel special." This was followed with lots more nonsense about food allergies.
Lots of food allergy bloggers and writers were angry. (Surprise, surprise!) But then something sad happened--Joel Stein's little son Laszlo had an allergic reaction after eating mixed nuts. This wasn't your 5-hives-and-an-itchy-mouth type reaction, either. Joel describes it like this, "Laszlo started sneezing, then breaking out in hives, then rubbing his eyes, then crying through welded-shut eyes, then screaming and, finally, vomiting copiously at the entrance of the Childrens Hospital emergency room..." Having seen Sophie like this, its enough to break my heart. And clearly, Joel has learned a little--he wrote a new article in which he explained his new point of view.
Normally, at this point I would still be completely ignoring all of this. After all, what we have here is some guy who doesn't know squat about food allergies and said some stupid things, after which he learned a little about food allergies. Here's the problem: now all those food allergy bloggers who were mad before are writing about karma and nut free schools and 20 other related things, all mean-spirited.
BACK OFF! We need to give this guy some space! He is still learning about food allergies and what that's going to mean for his kid and his life. All of us can look back on our early days and we can see that there is a learning curve with food allergies. I made mistakes; I'm sure you did too. But unless Mr. Stein makes mistakes that endanger his son, it's nobody's business. And even then it's up to his wife and social services and a doctor to sort out, not the public! So let's not worry about whether he's going to exclude nuts from his house. And let's not worry about his son's school and classroom. Let him, his wife, and their doctors manage Laszlo's allergies.
Every kid is different. Their allergies are different. Some kids can sit next to someone eating peanut butter with no problems. Some kids have to leave the house if there is pasta boiling to avoid reactions. Let's allow the Stein family to determine how to manage Laszlo's allergies, just as we were allowed to choose for our own children.
Joel Stein? Who's that? Joel Stein is a columnist. He wrote a rather inflammatory column which was published in the Los Angeles Times in January, which opened with this line: "Your kid doesn't have an allergy to nuts. Your kid has a parent who needs to feel special." This was followed with lots more nonsense about food allergies.
Lots of food allergy bloggers and writers were angry. (Surprise, surprise!) But then something sad happened--Joel Stein's little son Laszlo had an allergic reaction after eating mixed nuts. This wasn't your 5-hives-and-an-itchy-mouth type reaction, either. Joel describes it like this, "Laszlo started sneezing, then breaking out in hives, then rubbing his eyes, then crying through welded-shut eyes, then screaming and, finally, vomiting copiously at the entrance of the Childrens Hospital emergency room..." Having seen Sophie like this, its enough to break my heart. And clearly, Joel has learned a little--he wrote a new article in which he explained his new point of view.
Normally, at this point I would still be completely ignoring all of this. After all, what we have here is some guy who doesn't know squat about food allergies and said some stupid things, after which he learned a little about food allergies. Here's the problem: now all those food allergy bloggers who were mad before are writing about karma and nut free schools and 20 other related things, all mean-spirited.
BACK OFF! We need to give this guy some space! He is still learning about food allergies and what that's going to mean for his kid and his life. All of us can look back on our early days and we can see that there is a learning curve with food allergies. I made mistakes; I'm sure you did too. But unless Mr. Stein makes mistakes that endanger his son, it's nobody's business. And even then it's up to his wife and social services and a doctor to sort out, not the public! So let's not worry about whether he's going to exclude nuts from his house. And let's not worry about his son's school and classroom. Let him, his wife, and their doctors manage Laszlo's allergies.
Every kid is different. Their allergies are different. Some kids can sit next to someone eating peanut butter with no problems. Some kids have to leave the house if there is pasta boiling to avoid reactions. Let's allow the Stein family to determine how to manage Laszlo's allergies, just as we were allowed to choose for our own children.
Tuesday, June 22, 2010
Pecan Reaction 2005
When Sophie was 3 years old, our allergist lifted his ban on certain foods for her. Because of the number and severity of her allergies, he had previously restricted her from having tree nuts, fish and shellfish, even though she had no history of reactions to them. After she turned 3, he felt that this restriction was no longer necessary.
Knowing that pecans are a favorite of basically everyone in our family, my husband and I decided to try pecans first. On an afternoon when we were both home, we gave Sophie one pecan half. She chewed and we she began to swallow, she said, “My mouth is burning!” I immediately gave her a double dose of Benadryl. Within 5 minutes, she had huge welts following her lymph track and she was struggling to breathe. I guessed that we just needed to help her breathing until the Benadryl took effect (usually about 20 minutes). Based on that we decided to administer her inhaler and followed up a few minutes later with a nebulizer treatment.
After a few ups and downs, her breathing eventually returned to normal and we were able to continue with our plans for the rest of the day. In hindsight, I think I should have administered the Epipen. She had 2 body systems reacting: skin and respiratory. Her symptoms were responsive to treatment but only temporarily; breathing difficulties resumed within a few minutes of administering albuterol. I did not have the proper equipment to be able to determine other warning signs, such as blood pressure dropping. I am grateful that Sophie pulled through—we were certainly blessed—and given another similar situation, I would just give her the Epipen and go to the hospital.
Knowing that pecans are a favorite of basically everyone in our family, my husband and I decided to try pecans first. On an afternoon when we were both home, we gave Sophie one pecan half. She chewed and we she began to swallow, she said, “My mouth is burning!” I immediately gave her a double dose of Benadryl. Within 5 minutes, she had huge welts following her lymph track and she was struggling to breathe. I guessed that we just needed to help her breathing until the Benadryl took effect (usually about 20 minutes). Based on that we decided to administer her inhaler and followed up a few minutes later with a nebulizer treatment.
After a few ups and downs, her breathing eventually returned to normal and we were able to continue with our plans for the rest of the day. In hindsight, I think I should have administered the Epipen. She had 2 body systems reacting: skin and respiratory. Her symptoms were responsive to treatment but only temporarily; breathing difficulties resumed within a few minutes of administering albuterol. I did not have the proper equipment to be able to determine other warning signs, such as blood pressure dropping. I am grateful that Sophie pulled through—we were certainly blessed—and given another similar situation, I would just give her the Epipen and go to the hospital.
Monday, June 21, 2010
Wheat Challenge 2003
Wheat challenge--#1
As we prepared to go to Sophie's wheat challenge a few days ago, a scene replayed through my mind again and again...Sophie first wheat challenge. She was 1 year old. Her blood tests indicated that she was likely to be able to pass a challenge. At the time, I was desperate to have her dietary restrictions loosened, since I had very few recipes that worked with her long list of allergens.
We did the challenge at the doctor's office, of course. Sophie cooperated readily with eating the Cream of Wheat. She ingested several doses without a problem. About an hour into the challenge, she was tired and falling sleep in my arms. This seemed natural, since it was mid-afternoon, nap time to a toddler. Just as the nurse was preparing her next dose of Cream of Wheat, Sophie lifted up her head, vomited all over me and herself, and hives broke out all over her arms and face. As suddenly as her reaction occurred, this wasn't the scary part.
Several hours later, after we had endured observation, picked up her sisters, and made it home, I noticed that Sophie's bottom was red and tender looking when I changed her diaper. Thinking that a bath was in order, I ran some water and stuck her in the tub and then realized that we had a real problem. Sophie had red welts on her abdomen as well, and when I put her into the water, she tried to lay down, like she was going to sleep. This may be normal for some toddlers, but not for Sophie—giving her a bath usually means I get a shower too from all of her splashing and playing.
I later learned that Sophie was experiencing part two of a biphasic reaction to the wheat she had earlier ingested. I don't know a lot about what causes biphasic reactions, but the timing of the second phase suggests that it was triggered by wheat remaining in her system after the Benadryl she was initially given had worn off. Some 24 hour Zyrtec and a nebulizer treatment quickly got Sophie back to wiggling free and running to play, but when we prepared for a second wheat challenge, I kept coming back to this second phase of that reaction. Surely an older, more vocal Sophie would tell me before things got so bad, right?
As we prepared to go to Sophie's wheat challenge a few days ago, a scene replayed through my mind again and again...Sophie first wheat challenge. She was 1 year old. Her blood tests indicated that she was likely to be able to pass a challenge. At the time, I was desperate to have her dietary restrictions loosened, since I had very few recipes that worked with her long list of allergens.
We did the challenge at the doctor's office, of course. Sophie cooperated readily with eating the Cream of Wheat. She ingested several doses without a problem. About an hour into the challenge, she was tired and falling sleep in my arms. This seemed natural, since it was mid-afternoon, nap time to a toddler. Just as the nurse was preparing her next dose of Cream of Wheat, Sophie lifted up her head, vomited all over me and herself, and hives broke out all over her arms and face. As suddenly as her reaction occurred, this wasn't the scary part.
Several hours later, after we had endured observation, picked up her sisters, and made it home, I noticed that Sophie's bottom was red and tender looking when I changed her diaper. Thinking that a bath was in order, I ran some water and stuck her in the tub and then realized that we had a real problem. Sophie had red welts on her abdomen as well, and when I put her into the water, she tried to lay down, like she was going to sleep. This may be normal for some toddlers, but not for Sophie—giving her a bath usually means I get a shower too from all of her splashing and playing.
I later learned that Sophie was experiencing part two of a biphasic reaction to the wheat she had earlier ingested. I don't know a lot about what causes biphasic reactions, but the timing of the second phase suggests that it was triggered by wheat remaining in her system after the Benadryl she was initially given had worn off. Some 24 hour Zyrtec and a nebulizer treatment quickly got Sophie back to wiggling free and running to play, but when we prepared for a second wheat challenge, I kept coming back to this second phase of that reaction. Surely an older, more vocal Sophie would tell me before things got so bad, right?
What happens during a food challenge?
There are probably some variations in the methods used for food challenges by various offices, but our allergist's procedure has been standard in the 7+ years that we've worked with him. Sophie had her first food challenge when she was 1 year old, and she had her most recent challenge a few days ago, and they were much the same.
For almost all of our food challenges, we were asked to provide the food. The exception to this was her peanut challenge, where the RN used peanut butter that she keeps at the office for those challenges. For Sophie wheat challenges, both times we were instructed to bring Cream of Wheat and some sugar to make it more palatable. When we arrived at the office, the RN prepared the Cream of Wheat. And then we began.
Dose 1: A tiny amount (approximately 1/8 tsp.) of the food was placed on Sophie's tongue. With peanuts, the RN touched the food to her tongue and then scraped it off, but with milk and wheat she was instructed to swallow it. We then watched for signs of a reaction for 10 to 15 minutes.
Dose 2: Sophie was given slightly more of the food, maybe ¼ tsp. And again, we waited to see if she would react for about 10 to 15 minutes.
Doses 3+: Each dose was larger than the previous dose. The size of the final dose depends on the food being tested. For Cream of Wheat, Sophie ate the entire bowl by the time we were done. After eating the large final amount, we waited for about 30 minutes at the office for her to react. Since she didn't, we got to go home with wheat removed from her list of allergens! The whole process takes about 2 hours.
It is vital for people with a history of serious food allergies to do their food challenges with a physician at his/her office. If Sophie had started to react at any point during the process, the RN and allergist have an abundance of medications available to treat her symptoms, as well as the requisite experience to know how she should be treated. Had there been a problem, they could have administered any combination of Benadryl, steroids, albuterol, and epinephrine, based on her symptoms. Never try a food challenge at home, even if you have medications there. Our experience with Sophie's reaction to a pecan reaffirmed this for me!
For almost all of our food challenges, we were asked to provide the food. The exception to this was her peanut challenge, where the RN used peanut butter that she keeps at the office for those challenges. For Sophie wheat challenges, both times we were instructed to bring Cream of Wheat and some sugar to make it more palatable. When we arrived at the office, the RN prepared the Cream of Wheat. And then we began.
Dose 1: A tiny amount (approximately 1/8 tsp.) of the food was placed on Sophie's tongue. With peanuts, the RN touched the food to her tongue and then scraped it off, but with milk and wheat she was instructed to swallow it. We then watched for signs of a reaction for 10 to 15 minutes.
Dose 2: Sophie was given slightly more of the food, maybe ¼ tsp. And again, we waited to see if she would react for about 10 to 15 minutes.
Doses 3+: Each dose was larger than the previous dose. The size of the final dose depends on the food being tested. For Cream of Wheat, Sophie ate the entire bowl by the time we were done. After eating the large final amount, we waited for about 30 minutes at the office for her to react. Since she didn't, we got to go home with wheat removed from her list of allergens! The whole process takes about 2 hours.
It is vital for people with a history of serious food allergies to do their food challenges with a physician at his/her office. If Sophie had started to react at any point during the process, the RN and allergist have an abundance of medications available to treat her symptoms, as well as the requisite experience to know how she should be treated. Had there been a problem, they could have administered any combination of Benadryl, steroids, albuterol, and epinephrine, based on her symptoms. Never try a food challenge at home, even if you have medications there. Our experience with Sophie's reaction to a pecan reaffirmed this for me!
Thursday, June 17, 2010
Wheat is a food again!
Today we went to the allergist's office to have a food challenge for wheat. Based on last week's (or was it the week before last?) skin tests, our allergist felt really confident that Sophie would be able to eat it with no problems. We arrived a little before 1:00. At 2:30, Sophie had eaten an entire bowl of Cream of Wheat, and was still feeling great. At 3:00, we said goodbye to our doctor and the RN who administered the challenge, and drove home knowing that Sophie can now eat wheat. And, in the space of 2 hours, wheat became a food again.
Friday, June 4, 2010
??Tree Nut Cross-Reactivity??
Today was Sophie's annual allergy exam. Sophie wants to try to eat some tree nuts, so she had skin tests for some of the tree nuts today, and she had a definite negative to almonds.
BUT
Our allergist wants her to continue to avoid all tree nuts, because of cross-reactivity. And what is cross-reactivity? Well, apparently all tree nuts are very similar in their protein makeup, so if you're not allergic to almonds, and you eat them 100 times with no reactions, but your 101st time you might have a reaction anyway.
So, we are trying to sort this out. Have any of you had any cross-reactions to things that were not your allergies? Tell us about it.
BUT
Our allergist wants her to continue to avoid all tree nuts, because of cross-reactivity. And what is cross-reactivity? Well, apparently all tree nuts are very similar in their protein makeup, so if you're not allergic to almonds, and you eat them 100 times with no reactions, but your 101st time you might have a reaction anyway.
So, we are trying to sort this out. Have any of you had any cross-reactions to things that were not your allergies? Tell us about it.
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