Imagine this. Your 19 year old son is about to embark on a two week mission trip. Yes, he does have a severe peanut allergy, but as a family, you've flown several times a year for family vacations so you feel confident in his safety while aboard the airplane. After much preparation, it's time to take your son to the airport, get him checked in, kiss him good-bye and tell him to have a safe trip. Except that's not what happens. Instead, you get to the airport, go to check him in, properly declare that he's carrying Epi Pens and antihistamine tablets and are then told by the airline staff that he'll not be flying on their airline without authorization from their medical desk. Now, are you upset that your son is going to miss his flight or are you angry that your son is being penalized because he has a severe peanut allergy?
This was the case for Matthew Burns earlier this week as he tried to board Air Canada which would take him from Halifax to Toronto. From there he was going to catch a plane to Fiji where he would join the other volunteers for his mission trip (not a bad place to go for a mission trip...but I regress). His mom booked the flight using a rewards program, and told them of her son's allergy. She did not contact Air Canada directly.
Air Canada spells out their peanut allergy policy on their website. They require a 48 hour notification so that they can create a peanut free zone around the passenger's seat. In this case, the airline was not notified by the reward company, and they refused to let Matthew board the plane.
Matthew did make it to Fiji. He was able to get a seat aboard an American Airlines flight that same day. American Airlines didn't have a problem with his allergy. In fact, their website states that while they do not serve peanuts, they take no extra safety precautions for their food allergic customers.
So, what's worse? An airlines that refuses a customer because they did not receive notification and were not able to make a safe zone or an airline policy that says travel at your own risk? According to the article, the parents weren't necessarily upset because the airline refused to let their son board the plane, but more because the staff at the ticket counter wiped their hands of the situation and did not offer to help the family find a solution.
Saturday, May 14, 2011
Sunday, May 8, 2011
Happy Mother's Day!
I'm using a post that I wrote last year this time. I hope you don't mind seeing it again. It's one of my personal favorites. Happy Mother's Day to all of my wonderful readers!
Today I want to recognize a special group of moms...moms of children with life-threatening allergies. A mom with an allergic child has a lot on her plate making sure certain foods stay off their kids' plates! So, here's to the moms that make sure that the EpiPens and antihistamines are always on hand and in date, that read every label on every food, that call ahead to restaurants to see if the food is safe, that know every party/special occasion that takes place in their child's class in order to provide a comparable safe treat, that have meeting after meeting with school officials and teachers to discuss the special requirements of their child's allergy, that fill out multiple health forms and action plans with in case of emergency details, that receive the grumbling from a few that feel put out for having to accommodate their child's allergy, that hate knowing their child will be labeled as disabled, that search cookbooks looking for allergy friendly recipes and websites looking for alternative ingredients, that break the bad news to their child that they can't attend a function because it's not safe, that help their child sort through Halloween candy bags and Valentine card boxes to remove offending treats only to find that the throw out pile is larger than the keep pile, that keep up-to-date with all food recall information to make sure there isn't a mislabeled food violation in their pantry, that write their political leaders asking for more support for food allergy issues, that get angry with food manufacturers for worrying more about the bottom line then the safety of their child, that go to battle with acquaintances maybe even family members that don't believe the seriousness of their child's allergy, that hold their child's hand tightly while they have blood drawn or their skin pricked during a food allergy test, that explain to their child one more time that they're not weird and that yes it is unfair that they have this allergy, that pray regularly that there will someday be a cure for or even just a better understanding of food allergies, that wait year after year thinking this will be the one when their child outgrows their allergy only to realize that it's probably not going to happen, that watch their child go off to school by himself and worry all day that he isn't exposed to that one or more foods that can make him deathly ill, that soothe a child upset by an insensitive comment made by a peer, that spend hours researching the latest food allergy treatments, that drive miles out of the way to shop at grocery stores that stock safe foods, that spend hundreds of dollars more a year for those safe foods, that frequent their child's school at lunchtime so that their child doesn't have to sit alone, that shelter their young child from the true consequences of their food allergy and later watches as their older child accepts those consequences for themselves, that teach their child how to inject a life-saving device into their thigh, that hope their teenager isn't too cool or too forgetful to carry their EpiPen when they're out with their friends, that rush to the hospital because one of their greatest fears did occur and their child is having difficulty breathing, that remove an offending food from their own diet so as to not put their child at risk, that privately battle their anxiety, that paste a smile on their face and assure their child that everything is going to be okay and that pray they can keep it together, be strong for their child and family and protect their child from the dangers they face on a daily basis. To you fellow moms, a very special Happy Mother's Day!
Many Blessings,
Melanie
Today I want to recognize a special group of moms...moms of children with life-threatening allergies. A mom with an allergic child has a lot on her plate making sure certain foods stay off their kids' plates! So, here's to the moms that make sure that the EpiPens and antihistamines are always on hand and in date, that read every label on every food, that call ahead to restaurants to see if the food is safe, that know every party/special occasion that takes place in their child's class in order to provide a comparable safe treat, that have meeting after meeting with school officials and teachers to discuss the special requirements of their child's allergy, that fill out multiple health forms and action plans with in case of emergency details, that receive the grumbling from a few that feel put out for having to accommodate their child's allergy, that hate knowing their child will be labeled as disabled, that search cookbooks looking for allergy friendly recipes and websites looking for alternative ingredients, that break the bad news to their child that they can't attend a function because it's not safe, that help their child sort through Halloween candy bags and Valentine card boxes to remove offending treats only to find that the throw out pile is larger than the keep pile, that keep up-to-date with all food recall information to make sure there isn't a mislabeled food violation in their pantry, that write their political leaders asking for more support for food allergy issues, that get angry with food manufacturers for worrying more about the bottom line then the safety of their child, that go to battle with acquaintances maybe even family members that don't believe the seriousness of their child's allergy, that hold their child's hand tightly while they have blood drawn or their skin pricked during a food allergy test, that explain to their child one more time that they're not weird and that yes it is unfair that they have this allergy, that pray regularly that there will someday be a cure for or even just a better understanding of food allergies, that wait year after year thinking this will be the one when their child outgrows their allergy only to realize that it's probably not going to happen, that watch their child go off to school by himself and worry all day that he isn't exposed to that one or more foods that can make him deathly ill, that soothe a child upset by an insensitive comment made by a peer, that spend hours researching the latest food allergy treatments, that drive miles out of the way to shop at grocery stores that stock safe foods, that spend hundreds of dollars more a year for those safe foods, that frequent their child's school at lunchtime so that their child doesn't have to sit alone, that shelter their young child from the true consequences of their food allergy and later watches as their older child accepts those consequences for themselves, that teach their child how to inject a life-saving device into their thigh, that hope their teenager isn't too cool or too forgetful to carry their EpiPen when they're out with their friends, that rush to the hospital because one of their greatest fears did occur and their child is having difficulty breathing, that remove an offending food from their own diet so as to not put their child at risk, that privately battle their anxiety, that paste a smile on their face and assure their child that everything is going to be okay and that pray they can keep it together, be strong for their child and family and protect their child from the dangers they face on a daily basis. To you fellow moms, a very special Happy Mother's Day!
Many Blessings,
Melanie
Monday, May 2, 2011
Please Label GM Ingredients!
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| My Favorite! |
On the other hand though, I've been super worked up about the use of genetically modified ingredients and there not being a legal requirement for companies to label these ingredients. In order to find out if Ben & Jerry's used GM ingredients, I had to do significant searching on their website. As parents of allergic children, we're used to constantly contacting food manufacturers, so we all know it's a time-consuming process. Now add to that finding a company's policy on the use of genetically modified ingredients. It's no longer about just trying to avoid peanuts and tree nuts to keep Abigail safe, it's now also about trying to protect the health of my whole family.
There is a big movement right now in the organic community to pressure stores to insist their food suppliers label foods. I think the realization is that we can't depend on our government to force the issue by passing a law. I did do my part though by contacting my state representatives. The target store right now is Whole Foods. According to the article, "Organic Elite Surrenders to Monsanto," by Ronnie Cummings who writes for the Organic Consumers Association, "a self-appointed cabal of the Organic Elite, spearheaded by Whole Foods Market, Organic Valley and Stonyfield Farm, has decided it’s time to surrender to Monsanto. Top executives from these companies have publicly admitted that they no longer oppose the mass commercialization of genetically engineered crops, such as Monsanto’s controversial Roundup Ready alfalfa, and are prepared to sit down and cut a deal for “coexistence” with Monsanto and USDA biotech cheerleader Tom Vilsack."
What's the main reason Whole Foods surrendered? According to the same article, "Whole Foods is pleading for coexistence with Monsanto, Dow, Bayer, Syngenta, BASF and the rest of the biotech bullies, because they desperately want the controversy surrounding genetically engineered foods and crops to go away. Why? Because they know, just as we do, that 2/3rd's of WFM’s $9 billion annual sales is derived from so-called “natural” processed foods and animal products that are contaminated with GMOs."
Here's a YouTube clip of a protester trying to get answers at a Whole Foods as to what products contained genetically modified ingredients. Her point... if you'd require labeling, consumers could make educated purchasing decisions and the store employees would know what they were selling. However, as a Monsanto executive stated, If you put a label on genetically engineered food you might as well put a skull and crossbones on it.
If you're unclear abut the "natural" versus organic labeling, here's a link to an older post on my blog to get you started.
Back to to Ben & Jerry's. While they do use GM ingredients for their US products (they've re-formulated the European flavors because of it's GMO-free requirements), they are actively, and have been for years, trying to find alternatives to GM soy and corn ingredients. Per their website, "Our goal is to be GMO-free in both our domestic and international products. Some of the issues we are confronting at the present time are the availability of a non-GMO supply of alternatives such as corn syrup and add-ins such as candies, and certification of those supplies. Currently we cannot obtain secure free assurances from all of our suppliers." I've got to give them some credit for trying!
Wednesday, April 27, 2011
Organic Chocolate Syrup
I buy the chocolate syrup at a local store that specializes in organic products, but it's also available for purchase online. Unfortuantely, it's the only product from AH!LASKA that is made in a peanut/tree nut free facility. They also make cocoa powder for hot drinks and baker's cocoa, but these are made in a facility with other peanut products.
Thursday, April 21, 2011
Single Digit IgE Number
In the craziness of moving, preparing for Easter and our trip to the beach (where I'm writing this post), I almost forgot to tell everyone about my latest call with Abigail's doctor at Duke. Now that Abigail is on the maintenance dose, we only have to drive to the Duke Clinical Trial Unit every 6 months for lab work. In between those visits, the doctor calls to check in to see how she is doing, and to see if there are any issues or concerns. I had not heard her IgE lab results from our January trip to Durham so I was anxious to find out what her new numbers were.
Her IgE number is in the single digits! That's incredible! Our goal is to get her number to 2 by the end of the study. We are on our way. Her number is now 9.28. With a year still to get there, I quote our doctor, "Abigail has a really good chance of kicking this thing."
Her IgE numbers are following the pattern that they are seeing with the other clinical trial participants. When Abigail was 18 months old, her number was in the 14 range. When she entered the study at age 7, her number was 10.4. During the study, it spiked to 16.7, then down some to 15.5, then 12.9 and a year and a half into the study she's at 9.28. One of the biggest conclusions the staff at Duke has made is that this process takes time. They increased the sublingual immunotherapy study length by 6 months for a total of 36 months instead of the original 30. They've found that the extra time is getting the numbers that they want to see.
While Abigail's IgE numbers were in the teens to start, Duke is still seeing the same trend with children that start with numbers in the 300's, 800's and even 1000's. The number curve is still the same. The numbers spike and then drop along the same curve. I have a friend whose daughter's IgE number was in the 300 range, spiked up over 500, but is now in the 50 range. It sounds like a long way to go to get to 2, but her percentage change is in line with Abigail's. Her daughter is just seeing the drastic changes while Abigail's change of 2 to 2 1/2 points is equally a big deal.
Bottom line...it's working! We are so blessed. You guys hang in there too. The latest trial that Duke is doing now is administering the peanut protein via a patch. I really believe doctors are doing everything they can to make this process of desensitization as easy as possible to administer so that it can be done by allergist and doctors beyond those involved in the trials.
Her IgE number is in the single digits! That's incredible! Our goal is to get her number to 2 by the end of the study. We are on our way. Her number is now 9.28. With a year still to get there, I quote our doctor, "Abigail has a really good chance of kicking this thing."
Her IgE numbers are following the pattern that they are seeing with the other clinical trial participants. When Abigail was 18 months old, her number was in the 14 range. When she entered the study at age 7, her number was 10.4. During the study, it spiked to 16.7, then down some to 15.5, then 12.9 and a year and a half into the study she's at 9.28. One of the biggest conclusions the staff at Duke has made is that this process takes time. They increased the sublingual immunotherapy study length by 6 months for a total of 36 months instead of the original 30. They've found that the extra time is getting the numbers that they want to see.
While Abigail's IgE numbers were in the teens to start, Duke is still seeing the same trend with children that start with numbers in the 300's, 800's and even 1000's. The number curve is still the same. The numbers spike and then drop along the same curve. I have a friend whose daughter's IgE number was in the 300 range, spiked up over 500, but is now in the 50 range. It sounds like a long way to go to get to 2, but her percentage change is in line with Abigail's. Her daughter is just seeing the drastic changes while Abigail's change of 2 to 2 1/2 points is equally a big deal.
Bottom line...it's working! We are so blessed. You guys hang in there too. The latest trial that Duke is doing now is administering the peanut protein via a patch. I really believe doctors are doing everything they can to make this process of desensitization as easy as possible to administer so that it can be done by allergist and doctors beyond those involved in the trials.
Sunday, April 17, 2011
Good Tip for Candy Treats
My youngest son is in preschool with a little girl that has a peanut allergy. This last Friday, their class had an Easter Egg hunt. Parents were asked to bring in a dozen plastic eggs filled with treats. The note home to the parents reminded us that there was a child in the class with a peanut allergy and asked that we be mindful of the type of treats that we put in the eggs.
On the way home, I let my son open the plastic eggs that he had found during the hunt to see what treats they held. Guess what was in one of the eggs? A miniature Reese's Peanut Butter Cup. Seriously?? There were several hard candies in some of the eggs, some questionable, but there is no question about the safety of a Reese's Peanut Butter Cup. Was that a busy mom that just didn't think or an irritated mom that was making a statement. Given that I know all the parents, I'm going to choose to believe it was a busy mom. Regardless, I made a call to the mom of the little girl giving her a head's up of what he found in one of his plastic eggs. I told her I felt her pain. Abigail is all the time bringing home unsafe treats from school and birthday parties. As a second grader, she knows that she's not allowed to eat anything until we look at the treats together.
I was reading through a copy of Family Fun yesterday and came across a really good tip that had been submitted by a reader whose son had several severe food allergies. She found a really large jar and put lines around it at several places. Each line had a dollar value associated with it. When her son received treats that he couldn't eat, he'd drop it in the jar. When the candy reached one of the lines, he could choose to keep saving or turn it into cash to then spend on something he wanted.
I have 2 one gallon bags full of candy that my kids have received from various parties and holiday events. It's not all unsafe, I just limit the amount of candy my kids can eat. Not only the amount though, but the type. I'd rather they have something that I've provided that is either organic or that does not contain artificial sweeteners and dyes. I might try this tip and make a treat trade-in jar for our house as well. In the meantime, does anybody know what to do with all that candy?
On the way home, I let my son open the plastic eggs that he had found during the hunt to see what treats they held. Guess what was in one of the eggs? A miniature Reese's Peanut Butter Cup. Seriously?? There were several hard candies in some of the eggs, some questionable, but there is no question about the safety of a Reese's Peanut Butter Cup. Was that a busy mom that just didn't think or an irritated mom that was making a statement. Given that I know all the parents, I'm going to choose to believe it was a busy mom. Regardless, I made a call to the mom of the little girl giving her a head's up of what he found in one of his plastic eggs. I told her I felt her pain. Abigail is all the time bringing home unsafe treats from school and birthday parties. As a second grader, she knows that she's not allowed to eat anything until we look at the treats together.
I was reading through a copy of Family Fun yesterday and came across a really good tip that had been submitted by a reader whose son had several severe food allergies. She found a really large jar and put lines around it at several places. Each line had a dollar value associated with it. When her son received treats that he couldn't eat, he'd drop it in the jar. When the candy reached one of the lines, he could choose to keep saving or turn it into cash to then spend on something he wanted.
I have 2 one gallon bags full of candy that my kids have received from various parties and holiday events. It's not all unsafe, I just limit the amount of candy my kids can eat. Not only the amount though, but the type. I'd rather they have something that I've provided that is either organic or that does not contain artificial sweeteners and dyes. I might try this tip and make a treat trade-in jar for our house as well. In the meantime, does anybody know what to do with all that candy?
Saturday, April 16, 2011
Easter Treats
I'm having a hard time finding Easter treats that both meet my health standards and that are safe for Abigail's peanut allergy. I'm sure I could find items to order off the internet, but I feel like those items come at a premium plus the additional shipping charges. Having had luck at World Market with the Sun Cups in the past, I thought it was worth stopping in to see if they had any Easter candy. They did.
I found these Marshmallow Easter Eggs made by Rose Manufacturing in Ireland. The allergen information lists dairy and soy only, and they're labeled gluten free. There was no label for peanut/tree nut cross-contamination which appears to be a World Market requirement, and because they are made in the UK, there was a good chance that they didn't contain GMO ingredients. At $1.99 for a pack of 6 individually wrapped eggs, I thought it was worth the chance. I couldn't find anything about the product on their website, so I e-mailed the company. Here's their response:
Thanks for purchasing our products. I hope you enjoy them. Our manufacturing facility is a nut free environment with the exception of Coconut used on site. All raw materials used on site are GMO free. Hope this puts your mind at rest and have a nice Easter.
I haven't had a chance to try them yet so I can't guarantee the taste. However, considering they each just contain 7 grams of sugar, are made without GMO ingredients, have no artificial colors or flavors, are gluten free and are made in a nut free environment, they're going in the Easter baskets. I went back today and bought a few more packs. My sister has Celiac Disease so they're going in her basket as well.
I'll have to do a taste test later this weekend. I'll add a post note with the results so check back.
I'll have to do a taste test later this weekend. I'll add a post note with the results so check back.
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