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Airborne Anaphylaxis: My Son’s Fragrance Battle
Posted By Rosa Silk On 2014/06/23 @ 10:10 am In Story of the Month | No Comments
I am a proud mother to three wonderful children. The youngest of the three, Brandon, has an unusual medical condition that, sadly, has greatly affected his life. He has a severe, life-threatening allergy to the chemicals (fragrance) used in Axe Body Spray.
At least today we know the culprit behind Brandon’s reactions. Today, he is 16 years old, but it was back in 5th grade when he started to get sick at school. At first it was headaches, but then he started getting hives, and even had trouble breathing. I attributed this to growing pains, until one dreadful day when he went into anaphylactic shock. We were rudely awakened to the fact that there was something seriously wrong.
Brandon spent days in the hospital as doctors tried to figure out what caused the reaction. No one knew. They asked so many questions – and eventually came to the conclusion that it was something airborne that he must have been exposed to.
Learning this, I had many questions for the school: did they spray something, exterminate or paint? Had something gone on in the school that day that was different from any other day? I wanted to know anything that could help us find out what was going on. My questions went on and on, but there was no answer.
I did not want my son to be exposed again to something that could risk his life. I was at my wits’ end, but at the same time hoped it was just some sort of fluke.
As Brandon continued in middle school and then high school (which were in different buildings), we noticed a pattern. He was fine at home, but every time he went to school he would get sick with headaches, trouble breathing, and then welts on his face and arms, blurred vision and stomach pains. His health became unbearable, to the point that he had to be kept at home for weeks at a time before attempting to go back to school.
When he would return to school, the nurse’s office became part of Brandon’s day. It escalated to the point that he had several bad reactions, where he felt like he could not breathe. Each time the school nurse had to administer an epinephrine auto-injector before he was taken by ambulance to the hospital; his reactions to these still unknown chemicals were becoming more severe.
Years were passing, and we still could not figure out what was happening. By a small miracle, during middle school Brandon was able to correlate a scent in the hall to his reactions – he asked the students what the scent was – and that’s where our journey began. A challenge test done at the Children’s Hospital of Philadelphia later confirmed the reactions were being triggered by something in Axe Body Spray.
Since then, I have reached out to everyone that I could, including top-notch experts, hospitals, doctors and specialists in the field. Their only help and advice was avoidance of Brandon’s trigger, Axe Body Spray. But this happens to be a very popular product among teenage boys. How can my son avoid something in the air around him?
The worst part is that I am not allowed by law to know what chemicals my son has been exposed to. These ingredients are considered “proprietary” to the manufacturer. How can I not be allowed to know? Do commercial interests trump my child’s health? How can I be an advocate for my son?
Brandon’s doctors all had to sign a medical gag order to get the list of ingredients from the manufacturer, but still, there are no tests for these chemicals. I do not have the right to know the chemicals that trigger anaphylaxis in my son. I struggle every day with this.
Next page: Getting help from medical experts, politicians
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I am currently seeking the help of an expert at Yale Medical School, Dr. Carrie Redlich, who is in the process of evaluating Brandon. These fragranced  products are considered an environmental and occupational hazard. Our kids are not working at a manufacturing plant; they are simply going to school. Why should a child, or anyone, ever have to go through this?
I have also pressed politicians to help me. There is now a bill that is sitting in the Pennsylvania House of Representatives, introduced by Representative Marcia Hahn, called the Fragrance Free Schools Act (HB1955 ). Senator Lisa Boscala introduced a companion bill in the state Senate (SB1363 ). The bills are definitely an exciting step in the right direction, but there is a lot more to be done. Will they pass? Will they be properly enforced? What will it take to protect students like my son?
Brandon can no longer go to school because of chemicals he gets exposed to – doctors say they could kill him. For years, he switched between homeschooling and attending school, but now he cannot attend at all because the allergy has become so severe. Every day he asks “when can I be with my friends?” The school tried to plead with the student population to refrain from wearing Axe at school, but they are just kids and this hasn’t worked. We have to be the adults and try our hardest to protect them.
My son just wants to have a normal life. He is one of the strongest people I know. School was supposed to give him the freedom to learn and explore, but instead, it has robbed him of his health. This started when he was 10 years old: I packed his lunch, put him on the school bus, and a child was spraying Axe’s body spray in his class. That fateful day, six years ago, changed my Brandon’s health and life forever.
We all need to stop and think about the air our children are breathing at school, where they spend the majority of their day. We need to truly think about fragrance-free schools. Not only to protect Brandon, but also to protect other children from harmful chemicals that so innocently hide behind the catchall word “fragrance”.
Rosa Silk lives with her son Brandon in Bethlehem, PA. She will be posting updates to Brandon’s journey on Twitter under the handle @BeScentsLess .
Article printed from Allergic Living: http://allergicliving.com
URL to article: http://allergicliving.com/2014/06/23/airborne-anaphylaxis-my-sons-fragrance-battle/
URLs in this post:
 fragranced: http://allergicliving.com"http://allergicliving.com/2014/01/13/scents-sensitivity-2/
 HB1955: http://www.legis.state.pa.us/cfdocs/billInfo/billInfo.cfm?sYear=2013&sInd=0&body=H&type=B&bn=1955
 SB1363: http://www.legis.state.pa.us/cfdocs/billInfo/billInfo.cfm?sYear=2013&sInd=0&body=S&type=B&bn=1363
 @BeScentsLess: https://twitter.com/bescentsless
 Perfume Allergy and the Battle over Scent Ingredient Labeling: http://allergicliving.com/2014/01/13/scents-sensitivity-2/
 Fragrance Sensitivity: Hard to Breathe, Tough to Touch: http://allergicliving.com/2014/01/13/fragrance-sensitivity-hard-to-breathe-tough-to-touch/
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