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By: Amy Martin | AFAA Editorial Contributor
That day was the catalyst for all the days and mostly nights of research I would do, searching for an answer.
            I must have eaten too much, my stomach hurts, he said. My eyes darted to his plate and instantly I felt sick, too. His fruit was untouched. All that had been eaten was a couple bites of his sandwich.  Our instructions were clear and the same as always, One grilled cheese, cut in half with a side of fruit. He has a severe peanut allergy.  Same as always, we were assured it would be fine.  Clearly, it was not.  I gave my husband the look, then took my son to the hand washing station outside where we washed his face, hands and tongue as well as we could. 

            I made a quick stop at the kitchen to inform them we were having a reaction and they assured me it was impossible as they took proper precautions. I sat down to the table and realized the look meant eat all my fries in my absence to my husband.  Annoyed but preoccupied, I noted that my sons mouth had begun to bleed. It was swelling on the inside. A manager came by to again tell me they prepared his food safely (a conversation with her later revealed there were not peanuts near his food, only peanut butter. PEANUT BUTTER!!!) and to get my contact info for follow up later. 

            Our friends at dinner with us pointed out the hives popping up on my sons mouth. I told my husband that maybe I should inject him with his Epipen, which we keep with us at all times. We hesitated. (Not a mistake I would make again) Instead, we ran out the door and drove across the street to urgent care where they administered my sons first life-saving dose of epinephrine.

            As I contemplated if it was legal to wrap him in bubble wrap and lock him in his room rather than send him to kindergarten, as he was supposed to begin the following week, I decided that I could never trust anyone to prepare his food safely and therefore, avoidance was no longer the only viable option for us.

            As awful as that day was for us, as much as I loathe that restaurant and their carelessness that could have cost me my five-year-olds life, that day had to happen.  That day was the catalyst for all the days and mostly nights of research I would do, searching for an answer. I could not play defense anymore. It wasnt working. In order to stop living in fear of the next time, we needed to meet this food allergy head on.

 
 
By: Lilliana DeSantiago Cardenas | AFAA School Epinephrine Advocate & Editorial Contributor
With the passage of SB 1421 allowing school districts to provide stock general use epinephrine for emergencies it is important that we understand what this means.
Exciting times are here; our children are off to a new school year.  Unfortunately these are also times of anxiety and fear for many families. With the passage of SB1421 allowing school districts to provide stock general use epinephrine for emergencies it is important that we understand what this means.  Also what we can do while schools in AZ become more competent on Food Allergies, Anaphylaxis and how to help our children either with their own epinephrine or with stock.

  1. Most schools will not have stock epinephrine available this year.  By law they are only required to stock if funds have been allocated via the annual budget.  Schools may opt to purchase these through their own funds.  Check with your schools.
  2. Stock epinephrine should never take the place of your child’s prescribed epinephrine.  Bring your child’s prescribed medication to school, make sure it is not expired, label it clearly and provide clear and detailed information to all classroom teachers, aides, and any other adults that will work with your child during the school day on how and when to use it. 
  3. Be prepared and communicate, 504 Plans are essential if your child has food allergies that lead to anaphylaxis. They not only provide information and guidance on how and when to help your child, but it is a legal and binding document that is developed in agreement with school administration, teachers, and parents.   504 Plans also provide you the leverage you need to ensure that necessary accommodations are made in regards to food, medication access, and class room environment.  Also if there are violations to the 504 Plan it is much easier to take legal action and hold people accountable.  Some schools may challenge your child’s ability to carry their epinephrine if there is not a 504 Plan and information outlining your child’s condition and medication requirements.  Make sure you check in with your school administrator and nurse about this.
  4. Share training resources on how to administer epinephrine to all adults who work with your child: http://www.arizonafoodallergy.org/administering-epinephrine.html The thought of injecting epinephrine is scary for most people.  Ease concerns through education and practice with demos.
  5. Be a team! Work with the school as much as possible and understand that they are afraid too. Schools are set up to be educational institutions not healthcare providers so this is totally out of their comfort zone.  They don’t want to put your child in danger.  The more you work with them in a patient and respectful manner, the more responsive they will be.  They need to be educated on the issue, treatment, risks, and emergency management.  The more they understand that the danger is in the lack of responding vs giving someone epinephrine the more they will become comfortable and willing to help.
My experience working with schools for over 8 years on asthma, food allergies, and diabetes is that they want to help, but they don’t really know how.  They are scared and don’t want to get into legal troubles. They don’t want to hurt your child and they sure don’t want a tragedy on their hands.  Education and awareness is key and the way to achieve this is through collaborative partnership between parents, students and school.   

 
 
By: Melissa Enos | AFAA Education Specialist & Editorial Contributor
The more you make this a two-way street, the more complete your child's circle of support will be.
It's back to school time again! If you have a school age child, you are familiar with the shopping and preparing that we get caught up in every single year. If you have a child with food allergies, this entire ritual is also required – and then some. On top of everything you already have to do, you must also take into account the steps needed to make sure your child is safe once school starts. What are these steps, and how can you keep your stress level low while you prep for sending your child back to school? It is not always easy, and the fact that your child's safety is at stake makes this a very serious job. That still does not mean that it has to be a negative experience. With some planning and communication, you can enjoy an open relationship with your child's teacher while keeping your child safe at school.

 

Establish or Update Your Child's 504 Plan

A child's 504 plan should be reviewed every year. The beginning of the school year is a good time to get this done. If your child's 504 plan review is due at a different time, such as mid-year, you can still ask for a meeting to discuss changes or updates to your child's status. This is especially important if there have been changes since the last review.

If your child does not have a 504 plan in place, this is the time to get one. Whether or not children with food allergies can qualify for a 504 plan has been debated in many school districts, but their eligibility has been specifically established in the Americans with Disabilities Act Amendment Act of 2008 (http://www.ada.gov/pubs/adastatute08.htm). You may also wonder whether a 504 plan is necessary if your child's school or teacher has offered informal supports. Although it is great that the school is aware of and willing to work with your child, the truth is that establishing an official 504 document provides your child with the legal protection that verbal agreements cannot provide. Another great resource for getting the process started can be found here: http://www.arizonafoodallergy.org/get-a-504-plan.html. Finally, make sure to have all your documentation together when beginning or reviewing the 504. This means being prepared to provide medical documents and written statements of your child's specific needs. Having all this on hand will help avoid unnecessary generalities in your child's plan and make it as individually specific as possible.

 

Reach Out to School Staff

            A written plan is a great resource, but being active and available as a parent can help establish you as a resource to the school. Get to know your child's teacher and be in frequent contact with him/her via email regarding all school activities, not just those relating to food allergies. Volunteer if possible so that you can see the classroom routines and the teacher's styles. Seeing this first hand can help you work with the teacher to incorporate your child's supports as seamlessly as possible. The more you make this a two-way street, the more complete your child's circle of support will be. An active parent is a great academic and social support for any child, and for a food allergic child, an active parent will also provide that additional sense of safety they need to know they can keep their focus on learning.

 

Prepare Your Child

            How much your child understands and how much your child can participate in his/her own plan is a very individual question. This depends, of course, on your child's age and maturity level. The first thing to remember is to not assume that your child is ready just because he or she is a specific age. One 6 year old might be perfectly ready to carry their own epi and communicate their needs, while another 6 year old is not able to do this yet. As your child's parent, you are in the best position to gauge how much responsibility your child is ready to take.

            Even if your child is not yet able to take responsibility for his or her allergy management, it is still a good idea to talk with your child and inform him or her about being aware to foods and potential dangers. Teach your child to ask questions about whether something is allergy safe, and especially teach your child to only eat foods that are on his or her food plan (packed lunch, snacks provided by mom, etc). For younger kids, AFAA has some great coloring pages that can help to bring up the subject and open the lines of communication: http://www.arizonafoodallergy.org/coloring-pages.html. Ultimately, it is up to the staff at school to keep your child safe, but that also means that school is a great place for the child to begin learning how to manage their allergies independently.

 

            Overall, the fears and anxieties you have when it comes to keeping your child safe at school are well-founded, but that does not mean they have to interfere with the quality of your child's educational experience. It also does not mean that they have to interfere with your ability to enjoy your child's educational experience. After all, soon enough you will have homework, math facts, spelling tests, and science projects to manage! With some planning and preparation, you can reserve your stress for that diorama that your child waits until the last minute to begin. You can also rest easy knowing that you are not alone on this road. The AFAA website has many options for reaching out to other parents, professional organizations, and policy guidelines to help meet whatever needs you may have.

 
 
By: | AFAA Director of Operations & Founder
"I hope that western doctors will receive it in a spirit of a) open mindedness and b) humility. For more than 100 years, allergic medicine has practiced between the 40 yard lines, as I like to say", Henry Ehrlich, AAC.
I have had the privilege  of knowing Henry Ehrlich since the conception of Arizona Food Allergy back in early 2011. I originally reached out to Henry to donate some books to our Lending Library (a statewide service to the community of Arizona, where we house books in the public library system), but was fortunate to gain much more through this initial contact. I have had many great insightful conversations with Henry on a multitude of topics related to food allergy, and have been grateful for his expertise he provides to our members through our Facebook chat group.

All month of May, you can chat with Henry in our Facebook chat group about his newest book, Food Allergies: Traditional Chinese Medicine, Western Science and the Search for a Cure. Below, is an interview on this new book - Enjoy and see you on Facebook!

Interview by , with Henry Ehrlich of Asthma Allergies Children

(LH): What is the name of your new book?

Henry Ehrlich (HE): Thanks for this opportunity. I go way back with AFAA because it was the first Facebook group that opened its doors to me. The new book is called Food Allergies: Traditional Chinese Medicine, Western Science, and the Search for  a Cure.  

LH: What prompted you to write this new book?

HE: As you know, I edit a website called asthmaallergieschildren.com. When it was very new, my cousin and co-founder and co-author of our other book, Dr. Paul Ehrlich told me about Dr. Xiu-Min Li at Mount Sinai Medical School. He had heard her speak and said that her work was not only a distinct departure from everything else going on and maybe she would write something for our website. I went to meet her, heard her story, saw evidence of the good results she was getting in her private clinic with eczema, and I thought, this is a woman to be reckoned with. About a year later we first started talking about my writing a book.

LH: What would you say is the main draw to this book for parents of children with food allergy, or adults with food allergy?

HE: Borrowing from many of the early customer reviewers on Amazon and people who have heard me speak, I'd have to say it gives people hope that the epidemic can be dealt with and the science is there to prove it.

LH: How do you hope western medical doctors will receive this book, and potentially implement to help the food allergy community?

HE: I hope that western doctors will receive it in a spirit of a) open mindedness and b) humility. For more than 100 years, allergic medicine has practiced between the 40 yard lines, as I like to say. Allergy shots for seasonal and environmental allergies and inhaled corticosteroids for asthma--those have been the only real breakthroughs for large numbers of patients. Dr. Li's vision of integrative medicine to treat allergies is not going to happen quickly, but given the right level of interest, it should burgeon. If enough patients and parents want to go in this direction, then they should try to make sure the resources are there to make it happen.

LH: Is there anything else you’d like to add about your book?

HE: I had a ball writing it. I think that shows through, even though much of it is very detailed accounts of laboratory science and clinical trials based on peer-reviewed literature. I call it "a love letter to science."



 
 
By: Holly Nace | AFAA Editorial Contributor
I was a young mother, with an incredibly sick child who was not being listened to.
I should have listened.

I knew there was something wrong with my young son.  Appointment after appointment I allowed myself to be quieted by a doctor that was sure I was over-reacting.

What should have been my breaking point was when we rushed to the Emergency Room with our little boy, who was in anaphylaxis shock. Only to return to our Pediatrician, one that we had researched, believed in and trusted with our little one's life, to be shushed again.  It was a freak incident.  "Don't let him have that food." He said.  I felt defeated.

I begged for a prescription for an Epi-Pen.  He said that my son was not big enough for one. My son was over 28 lbs and I was refused a life-saving measure that I felt we desperately needed.  I told them how the E.R. Doctor's said we had just made it in time. WE HAD JUST MADE IT IN TIME. My Pediatrician didn't bat an eye.

All of the memories, the helplessness, and the terror come back to me.  With what I know now, I am ashamed that I did not act sooner.

My young son looked like he was sick on more days than he looked healthy. I asked our Pediatrician if we should be wary of any other trigger foods.  I was extremely hesitant to try peanut butter. I even told our Pediatrician that if and when I had my little boy try peanut butter that we would be in the parking lot of Phoenix Children's Hospital. He laughed at me.  He laughed at me in that small room as I clutched onto my little man.

I was done. I was done being talked down to.  Being talked at, instead of listened to.  I was a young mother, with an incredibly sick child who was not being listened to.

The first visit with our new Pediatrician was for my brand-new baby girl's well visit.  My son was not even present and I told her just a snippet of our history with his illnesses. She immediately gave me an order for allergy testing and a prescription for an Epi-Pen.  I bawled into my new little girl's receiving blanket.  I was just so thankful that she listened, she cared. She assured me that we would figure out what was wrong with him, no matter what. 

I should have listened to the self-doubt, that there was something wrong with my child.  My intuition told me there was an answer.  I let a medical professional make me believe that I didn't know what was best for my child.  That I was overreacting.  I am my child's advocate, their champion, and mother.

My little man is allergic to over twenty-five different foods.  The majority of which were staples in his diet. He is indeed highly-allergic to peanut butter and I am thankful that I at least listened to the tiny voice that said we don't need to try that food.  I did listen.

 
 
By: Gladys Marietti | AFAA Editorial Contributor & Education Specialist
Believe it or not, I'm allergic to chocolate! Cupid has not delivered a red heart-shaped box of Valentine's chocolates to my house for some years now.
Believe it or not, I’m allergic to chocolate! Cupid has not delivered a red heart-shaped box of Valentine’s chocolates to my house for some years now. For those of us with food allergies, holidays need to be celebrated a little differently. Whether you’re a child or an adult, who doesn’t love to get a treat for St. Valentine’s Day? The challenge for families, friends and sweethearts is what to get for those who have limited food choices. I like to switch the focus to non-food items. In anticipation of this holiday, I’ve been compiling a list of creative ideas for gifts to give and thoughtful things to do that don’t involve food. I’m happy to share these low-cost and no-cost ideas with you!  

These are fun ideas for kids and school classes “36 No-Candy Valentines”:  http://pluckymomo.blogspot.com/2014/01/32-no-candy-valentines.html
 
Did you know there are some festive ideas on our own AFAA page? Find them here: http://arizonafoodallergy.org/birthdays--holidays.html  

A cute heart bookmark made with a stamp pad and your fingerprints- could easily be turned into a card! http://www.crafts-for-all-seasons.com/thumbprint-heart-bookmark.html  

Who is old enough to remember the popular “fortune tellers” made of paper and controlled by your hands? Here’s one design so you can re-introduce them to your own children: http://www.designmom.com/2012/02/diy-valentine-fortune-tellers/  

Free printable mazes and word scrambles are a fun activity for any family member: http://www.printactivities.com/Seasonal_Activities/Valentine_Activities.html  

Mad Libs have been around since 1950’s. They are amusing word games where you fill in sentences with silly words: http://www.sisterssuitcaseblog.com/2013/01/valentines-day-mad-libs.html  

Man approved Valentine’s? Not pink and frilly ones? Yes, they do exist! http://www.thedatingdivas.com/holidays/valentines-day/man-approved-valentines/  

Very trendy “Open When” letters – easy to print and give from the heart: http://www.thedatingdivas.com/holidays/valentines-day/open-when-letters/  

“Love” Coupon Books are always appreciated. Here are three to print, cut and staple together:

http://unfortunatelyoh.blogspot.com/2012/02/printable-valentines-coupons.html

http://www.mommybydaycrafterbynight.com/2012/01/free-printable-valentine-coupon-book.html

http://www.iheartnaptime.net/printable-love-coupon-book/  

Who wouldn’t feel loved with one of my personal favorites – a gift of sentimental notes! Type up a bunch of your favorite moments, memories, trips, character traits or events you have shared over the years. Print them out, cut them into paper strips and fold them up. Place them in a glass jar or plastic container and add a heart shaped tag that says “I Love My Memories of You” or use one of these: http://junelily.com/free-printable-valentines-cards/


 
 
By: Samantha St. Vincent, AFAA Event & Education Specialist
Have you ever had the experience where you're looking for something, but can't find it? That happened with his epi-pens. He didn't actually need them, I was doing my paranoid check. But, what if my son needed his medication and I couldn't find it?
Purses are now a black hole for all the things we think we might need. I have everything but the kitchen sink in my bag, and sometimes I throw that in just in case.

When I had to start carrying my son’s Epi-pens I became paranoid and would constantly check, double-check, and triple-check that I had his medications.

Have you ever had the experience where you’re looking for something, but can’t find it? That happened with his epi-pens. He didn’t actually need them, I was just doing my paranoid check. But, what if my son needed his medication, and I couldn’t find it?

Solution? A big, bright-red first-aid bag.

This bag wouldn’t get lost anywhere. It’s easy for anyone to see if I need his medications. I can easily switch bags without worrying about forgetting something.

Here’s a list of everything that is in the “allergy-bag” and why.

I have big pins that say “Epi-pen Inside”. I have one on the diaper-bag and one on his “allergy-bag”. This pin allows others to quickly identify which bag is mine if needed. If I am ever unresponsive, emergency-personnel will check my bag for identification. They will see the pin and quickly locate the allergy-bag, giving them the information needed to protect tadpole since he can’t advocate for himself yet.

The first thing I put in the bag was his epi-pens. No explanation needed.

How will they know the bag is for him? A current picture and information card. Update the picture periodically.

Your information card may have different information. Ours has tadpole’s full name, DOB, home address, emergency contact name and phone numbers (me, hubby and my mom), the name and number of his pediatrician and allergist, list of allergies and medical conditions, and a list of current medications and dosage information. The back of the card has some of his favorite things (ex. toys, characters, food etc.) I’m planning for the worst; I can’t respond and I need to trust emergency-personnel to care for my child until a relative or I can.

Tadpole has asthma so I carry his inhaler. Think of any other medical conditions that your child has and any items needed.

I carry the big bottle of liquid-Benadryl. Use a piece of masking-tape to write the dosage for your child on the outside of the bottle to avoid having to figure it out in a panicked situation. Update this information periodically.

I also carry Benadryl cream and Hydrocortisone. If tadpole breaks out in hives the Benadryl cream will help. The hydrocortisone quickly erases his eczema if needed.

Buy or make a mini-first aid kit. I have band-aids, Neosporin, and gauze pads.

The last item in the allergy bag is hand sanitizer so I can clean my hands before undertaking any mommy-operations.

Is it a big bag? Yes. But, let’s be honest, those of us who have children with food allergies will be spending the rest of our lives hauling around emergency medications, safe snacks and more. 

 
 
By: , AFAA Director of Operations
"A new nonprofit organization launched today is taking the American public and the food allergy community to a whole new level of support and compassion"
Picture
Photo courtesy of FAACT
Very exciting news for the food allergy & anaphylaxis community today! There has been much change and what seems like organized chaos amongst the national organizations in our community over the last couple years. Merger's, new start-ups, bloggers taking center stage, state level organizations morphing from support groups to nonprofits in their own right, and more!

The buzz from the community is that of contentment, hopefulness, confusion, and a lot of disappointment. Without pointing the finger at any one organization - there has been lack of compassion, lack of support, lack of advocacy, lack of education, and lack of awareness. This coupled with a general sense of "trying to be everything to everyone".

I have personally worked with each one of the leaders at the new FAACT on multiple levels. Some more than others. I have positive things to say about each and every one of them. How will they fill a void that is greatly in need of repair to help our community?

I could write to tell you about each of their bio's. You can check that out first hand for yourself HERE. Instead I will tell you this: Each and every one of these leaders for the new FAACT, is A MOTHER OF A CHILD WITH LIFE-THREATENING FOOD ALLERGIES! Each of them have also been successful in their own right on a state and national level educating, advocating and supporting the community. They know first hand what it is to have their child diagnosed, work with schools, restaurants and more. They get it!

What exactly are they bringing that hasn't already been brought to the table? They have worked in the food allergy community for YEARS, and know what is working and what wasn't working. Here's what you can find on their site and look forward to in 2014:

Annual Food Allergy Conferences in California, Georgia, Colorado and Pennsylvania.

CAMP TAG, The Food Allergy Gang Summer Camps in California, New Jersey and a Midwestern location TBA.

Teen Conference & Advisory Council

Adult Resources

Civil Rights Advocacy

eLearning

Government Relations

and more!

Arizona Food Allergy has a great working relationship with FAACT, and their leadership. We are excited about the opportunities to work together with a national organization that can help us on a state level here in Arizona, as well as what they can bring to the Nation. Congratulations not only to FAACT and their leadership, but to our food allergy & anaphylaxis community. Let's celebrate this new organization and all the great things we have to look forward to in 2014... Happy New Year ... Here's to new beginnings!





 
 
By: Gladys Marietti, AFAA Editorial Contributor
"On #GivingTuesday – following Black Friday and Cyber Monday – people worldwide will get together online and in-person to kick off the holiday season with a day dedicated to giving back." 
Get Your 'Give' On!  What?!?  

So glad you asked!  Tuesday, December 3rd, is the 2nd Annual Giving Tuesday to Put the Focus Back on Giving this Holiday Season.

On #GivingTuesday – following Black Friday and Cyber Monday – people worldwide will get together online and in-person to kick off the holiday season with a day dedicated to giving back.  Individuals will start off the holiday season and give back to the causes they care about most.

It's your opportunity to give to Arizona Food Allergy!  We are seeking tax deductible contributions in any amount.

Why care?  When someone has a food allergy, their quality of life is compromised.  Maybe you know someone in this situation.  Or, what if you became allergic someday?  Wouldn't you want resources to help you?  My food allergies began in my adult years, and AFAA has been there with education, support, advocacy and research to help me and my family.  

The Arizona Food Allergy (AFAA) is a non-profit organization dedicated to improving the lives of those affected by food allergy and anaphylaxis in the State of Arizona.  It is their goal to bring awareness, understanding, and safety within families and communities by providing educational resources, personal networking experiences, opportunities for community involvement, and funding for research.  We depend on public donations for these programs.

Here's how to Get Your 'GIVE' ON:    

DONATE directly AFAA through our secure PayPal account

AFAA Secure Pay Pal Account

REGISTER and/or DONATE to our Zoo Walks on our secure site - You don't have to walk to give!!

Phoenix Zoo Walk Registration and/or Donation |  www.zoowalkphoenix.org

Tucson Zoo Walk Donation Registration and/or Donation |  www.zoowalktucson.org

How is your gift used?  100% goes to fund programs in local Arizona communities and impacts the lives of those with food allergy and anaphylaxis - as we are a 100% volunteer run organization.  One member states, "AFAA has really helped me to know that I'm not the only one out there with so many severe food allergies. When I first was diagnosed, I went into a depression because there were so many foods I love that I had to take out of my diet.  AFAA members have been so supportive and helped with ideas to replace foods without avoiding social situations".    

- Actual cost ONE child food free AFAA Easter Egg Hunt or Halloween Trunk-or-Treat =  $20. Family pays $0 as these events are paid in full with funds raised through donations to our Zoo Walks.

- Actual cost ONE child - Summer Camp Ye bik'ehgo = $300. Family pays only $45. This amount is offset dramatically with funds raised through donations to our Zoo Walks.

- Actual cost ONE adult - AFAA Food Allergy & Anaphylaxis Conference = $150.  Adult pays only $19-$39. These amounts are offset with funds raised through donations to our Zoo Walks.

Now you know! And, when you know better, you do better.  Please get your 'GIVE' on this Tuesday, December 3rd by donating to AFAA!  We invite you to learn more about us at www.arizonafoodallergy.org 
 
 
By: Sarah Plato, Community Outreach & Development Coordinator | North Scottsdale | AFAA
"Dr. Sharma: It is true that some asthma inhalers contain  lactose, and as a result, contain trace amounts of associated milk protein...." Allergic Living Magazine
Thank God for Facebook. Today I was looking through my "news feed" which previously I thought was a silly name for a category for friends' complaints and annoyances of the day, until today when I stumbled on this article by Dr. Sharma about dairy in dry inhalers used for asthma. Well, I stopped in my tracts and read this carefully as my son has an anaphylactic allergy to dairy and has mild asthma treated by inhalers. I found this amazing that some dry inhalers have lactose (milk sugar)! I'm reading on and the article doesn't name which ones list dairy as an ingredient so I read on to the comments left by readers and found a name my son uses- Pulmicort! Thankfully my son uses
the nebulizer formulation which apparently does not contain milk- phew! Still, what on Earth would make me think "oh yea don't forget to check for milk in that inhaler." Another reader also commented on finding peanut as a contaminant in one of her inhalers... Scary business! So now I have learned a new lesson..."call every drug company for every drug my allergic child is given- every time."