Judged

We do not hear many comments directly but, beneath the surface, you can feel the rumblings.  I am certain that as I walk away from many conversations that there are conversations about our extreme situation.  Some with empathy and others with hatefulness.  I don’t fully understand though how my child’s disability is cause for such hatefulness.  Read the below comment that I read yesterday in regards to a report that a few Canadian churches are going above and beyond to accommodate people with life-threatening allergies. 

 “Why does the vast majority of the human race have to adapt for the genetic weaklings?

If someone is so allergic that they cannot function in normal society, they should quite simply be institutionalized.

The simple threat of institutionalization would cure many of these allergy sufferers, whose ailment is mostly, if not entirely, in their minds.

I’m sorry, but a religious institutions should NEVER even CONSIDER giving up or changing their rituals for a select few.

And by the way, I am not religious at all. But I do wear aftershave, and will ALWAYS wear aftershave, despite what the nanny staters want me to do.”

Read more: http://www.cbc.ca/consumer/story/2010/10/14/con-church-allergies.html#ixzz12R29wokL

Again, WHY is my child’s disability igniting such hatefulness in grown adults?   How is serving gluten-free waffers and switching to less fragrant flowers any different then installing ramps and hand rails?  It is no wonder that there is such a bullying epidemic among our nation’s children when the adults that are leading the way are not teaching empathy and acceptance.

Atrovent…

I am my daughter’s advocate, I am my daughter’s advocate, I am my daughter’s advocate….  Ugg.  No matter how much I question every little thing, hear the snippy comments of those who think I am a wee bit overboard (the “Munchausen’s Mom”), check every freakin’ label and now have a service dog to check it all again, I am ultimately my daughter’s advocate.  I can not lay down my “sword” or relenquish the “battle” for a single moment.  As much as I trust doctors, teachers, friends and relatives, at the end of the day, she is my responsibility.  And as hard as it is for me to even grasp the severity of her allergy, I am the closest one to “getting it”.  Her survival (and my son’s) is very much dependent on my advocacy.

ad·vo·cate

–verb (used with object)
1.to speak or write in favor of; support or urge by argument; recommend publicly: He advocated higher salaries for teachers.

–noun
2. a person who speaks or writes in support or defense of a person, cause, etc. (usually fol. by of ): an advocate of peace.
3. a person who pleads for or in behalf of another; intercessor.
4. a person who pleads the cause of another in a court of law.

So, what more could I have done when I gave the ER intake nurse her list of life-threatening food allergies?  Or when I quizzed them on every drug that they were about to administer?  Or when I shared with everyone that entered the room just how serious her allergies are?  I even showed the Dr. pictures of our beloved Clifford, our allergy alert service dog!  Now, I wish I had taken him with us.

And despite all my efforts,  she was given the generic of Atrovent in a nebulizer treatment along with Albuterol and Orapred.  I watched in horror as her face turned bright red and swelled to shape of a Cabbage Patch Kid…  I begged the nurses to quickly give her an epi-pen as I dug through my purse to grab one to administer myself.   In retrospect, I am somewhat comforted that they too were baffled by her allergic reactions.  I have many times made the mistake of treating each individual symptom with other drugs rather than giving her the epi-pen.  That fear is gone.  I got to see just how she would react to it there.  No, she rarely gets hives when she is going into anaphylaxis and she rarely swells either.  It was definitely a different reaction but, I knew we needed to act quickly.  Her pulse/oxygen levels quickly dropped to the low 80s and her breathing was clearly labored.  She was begging for help and coughing and crying.  Every tear left behind welts as her membranes were loaded with this toxic substance.

Thankfully the epinephrine did turn the symptoms around.  So, what caused this horrible reaction from a medicine that is supposed to improve one’s breathing?  PEANUTS!  Why the heck would any company put peanut oil in a medicine used for asthma when so many peanut allergic people have asthma.  And even more maddening… WHY is there NO warning on the labels or inserts???   Somehow these sites know about it though: http://www.drugs.com/pdr/atrovent.html  and http://www.healthline.com/goldcontent/ipratropium-2 Mobile Downloads 300

 

When we finally got home from the ER, I searched online and found several stories of the exact same thing happening to other children as far back as 1998!  After sharing our recent experience with other parents, I learned that the exact same thing happened to two other children that I know!

If this has happened to your child, even if it was months or years ago, PLEASE report it to the FDA!  With enough reports, the manufacturers will be forced to disclose this at the very least on the inserts and could be forced to remove the peanut oil from the product all together.

Also, if you have had similar problems with other drugs (even with other food allergies), PLEASE comment here so that we can all help each other!

Food Allergens in Drugs

Please add any drugs you know about in the comment section below.  I will add them to the list.  Thanks!

Dairy – Milk

RELENZA® (zanamivir) Inhalation Powder, for oral inhalation
Advair® Diskus®
Serevent® Diskus®

Flovent Diskus
Foradil® Aerolizer®
Singulair®  10 mg tablets

Eggs
Most Anesthetics
Flu Vaccines

Peanuts
Atrovent (generic for nebulizer manufactured by Nephron)
Propoven (imported anesthetic – used when Propofol was in short supply)

Tree Nuts 

Soy 

Wheat 

Shell Fish 

Fish

This is obviously not a complete list and as with everything in the food allergy world, always read the label and ask your doctor. 

Bullies

 Grrr… My frustration level is rather high this week.  Two kids in the neighborhood thought it would be fun to chase my kids with a bowl full of peanuts.  After they sat and ate the peanuts while taunting my kids, they then pretended to be “Peanut Zombies” and chase the kids.  When all was said and done, they covered the yard of the vacant house next door (where all the kids play together) with peanuts that they crushed while my kids ran to safety at home.  While neither of my kids came into physical contact with the peanuts, the airborne allergens alone were enough to cause Kate some stomach issues immediately.  Today she missed school due to a fever.  I am not sure if it is related or not but, she was fine yesterday until all of this happened. 

In an effort to nip this in the bud, I contacted the parents.  One of the kids is a second time offender and his mother was absolutely no help.  She stated that she watched from the window the entire time and her son did not get anywhere near my kids with peanuts.  Funny though, I asked her daughter before I approached their home what had happened and she stated the exact same thing that my kids told me.  At any rate, it may seem like I am making mountains out of mole hills if you don’t understand anaphylaxis and life-threatening food allergies.  After I spoke with her, I contacted the police and filed a report, contacted the school and busing and let them know of the bullying incident.  This is really serious.  It cannot happen again. 

I am very thankful for the support system that I have in other food allergy parents and concerned friends.  I learned of two stories that might help us all to see the legal ramifications of such an act as well.  http://www.seattlepi.com/local/309755_poison31.html  and http://www.cbsnews.com/stories/2008/04/19/national/main4029180.shtml.  So, if you think this was a childish prank that was harmless, think again.  At the very least, this was a hate crime.. and at the most, assault with a deadly weapon or attempted murder.  

By the way, Clifford saved the day!  He searched the area and together we cleaned up the peanuts.  What an awesome dog!  There is no way I would have found all the fragments of peanuts alone. 

Some helpful resources I found that may help other food allergy families:

http://www.calgaryallergy.ca/Articles/English/bullying.htm
 http://www.foodallergy.org/page/teasing-and-bullying
http://allergicchild.com/foodallergyandschools.htm
http://www.stopbullyingnow.com/index.html
Illinois State Board of Education’s Stance:
http://www.isbe.net/pdf/ED-INSIGHT4-01.pdf

Back to School

I am so proud of my kiddos, our sweet Clifford and District 34.  They have gone above and beyond to help the kids and allow Clifford to do his job!  Nick is in a class that only allows fruits and veggies in the room and Kate’s class only allows for specific pre-approved snacks.  Her class has set up a wet wipes, hand cleaning station with a gate at the door.  The only way to enter the classroom is by cleaning your hands first. 

 Today, Kate had an asthma attack within the first 20 minutes of class.  Kate let the teacher know that she needed her medicine and the nurse responded quickly by coming to her (rather than her going to the nurses station).  She gave her a treatment while she watched “Alexander the Allergic Elephant” with the rest of her class.  She then stayed with her and watched for other symptoms and called me to let me know what was going on.  Way to go Hillcrest!  Thank you!  Clifford has been doing searches of the classroom and has found things that absorb and are not easily cleaned to be trouble.  Take note other allergy parents: crayons, play-dough, library books, birdseed, sand and bins of beans. 

Overall, I am feeling very at peace about this school year which is not something that goes hand in hand with lethal food allergies!

Vigilance

A little sleep, a little slumber, a little folding of the hands to rest— and poverty will come on you like a bandit and scarcity like an armed man.” Proverbs 24:33-34 

This is the verse that some 15 years ago kept me up till all hours of the night studying for Corporate Finance and Statistics exams.  I am so thankful that I hid the word of God away in my heart during those critical years.  I definitely retained more from memorizing key verses such as this than I did of finances!  Over the years, this verse has come to have many different values in my life.  Today, it means life and death.  One slip up could cost me “my everything”. 

 Vigilance: 1.Proper attention in proper time. 2. The abnormal state or condition of being unable to sleep. 

Another quote that someone shared with me a few years back has also come to mean different things throughout the years…  “When your output is greater than your input, your upkeep will be your downfall.”  Hence, the picture of the tomato plants above.  I have a small inclining of what Eve must have felt watching those apples go untouched.  I have been watching the neighbor’s tomato plants with envy.  Mine pictured below are full and robust but, not producing scrumptious red, ripe tomatoes yet.  His, neglected and forgotten have huge beautiful tomatoes on them that he has not picked!  I have no idea why but his entire garden is producing and rotting.  I am dying to sneak over there and snag a few, however, it took me a week of waiting for him to leave his house to even steal the picture of his plants!   I have no idea why he would go to so much work to not enjoy the fruits of his labor. 

 So, why do I ramble on about tomato plants and vigilance on this site?  Those tomato plants are a reflection of my life – that of a parent raising kids with life-threatening food allergies and severe asthma.  While I am remaining vigilant for my kids, doing everything in my might to keep them safe from the things that can kill them (a simple peanut butter sandwich or a glass of milk… ha… trace amounts of those things),  I have neglected and forgotten many other important things in my life.  We have had to make huge sacrifices and have walked away from many opportunities and relationships to maintain this vigilance.  The cost of chronic illness is staggering in every way. 

I once had a high paying job.  I wore a suit daily, drove many, many miles weekly.  I helped business owners to excel in their sales.  I walked away from that.  How could we leave a child in the hands of a care provider who flat out told us “you’d be a fool to leave this child with anyone”.  Just merely walking out the door would have cost us $3,000 a month for allergen-free baby formula and the ONE day care that would agree to take both kids.  A blessing in disguise, I walked away with renewed purpose to protect my kids and somehow provide for them and be with them out of my own means.  I now have many hats as a home-based overnight concierge, a business owner, a consultant, an ebayer and a savy, super-couponer!  Both my husband and I have quite the juggling act while working opposite shifts now for the past 7 years.  Whatever it takes to maintain that vigilance.  You do whatever you have to do. 

Stress.  At least now I get paid to stay up all night and worry and pray.  None of us knows when we will last see our loved ones.  The knowledge that a morsel of food can kill them certainly does weigh a little heavy on my mind though.  I have a healthy fear that has pushed me to be prepared and vigilant.  So, on the outside, you see beautiful fruit, however, on the inside, the core of me, I am rotting away.  Like this grand, old cedar tree that has graced our yard for many years, neglect has cost it everything.  Another neighbor abandoned their home.  The weeds and baby trees grew along the fence line and the young sapling on the other side of the fence literally sucked the life out of our poor old cedar tree.  This is my theory at least. Food allergies are sucking the life out of me! 

I am no different than many stay at home moms.  I have neglected my own well being in exchange for busy days with kids.  The mere thought of going to the gym and leaving my kids with others is not worth the stress though.  I have.  And they have been fine… so far.  It only takes once though.  I like the idea of going out to dinner with my husband.  A date night.  We have.  On very rare occasions, however, neither of us has felt very at ease about it.  So far, nothing too serious has happened.  So far.  But, it only takes once.   Church. Sports. Scouting.  Camping. Travel. Sleepovers.  School.  Movies.  Potlucks.  Ice cream socials.  Family get-togethers.  Weddings. Funerals.  Even a stay in the hospital.  They all involve food.  Everything has to be scrutinized.  Nothing is whimsical or random.  Every decision has to be weighed.  It only takes once.

What is it like to parent kids with food allergies?

Many people have commented with empathy that they can’t imagine what life must be like living with a child with food allergies. And sometimes, I hear or read about parents grumbling about how inconvenient it is to them that their child is in a class or play group with a child with food allergies. It breaks my heart to hear that but I can understand.

I can’t speak for other food allergy parents but, in my experience, living with food allergies is like sending my precious preschooler down the interstate on her tricycle in the middle of rush hour. I am out there madly waving and screaming to every car to please slow down and avoid her. You can only imagine my fear and anguish and the thoughts running through my head of losing my child. I have adorned her with a helmet and knee pads.. even dressed her in bright colored clothing but, she is still in the midst of chaos and clearly an accident waiting to happen. I am praying that no semi-trucks go flying by or someone not notice her. We have no other choice, this is our route, this is the only way we have to go. Sure, we can stay home and isolate ourselves from the world but, that idea has problems all it’s own.
FreewaywithKate

Now imagine with me, sending her to school. It is much like sending her out there on her tricycle all alone. If you thought I was frantic before, now I am beside myself with many sleepless nights. Who will watch out for her? She can’t read the road signs (the labels on the boxes). She is not exactly sure where she is going (is not clearly able to express what is going on in her body when she is reacting or tell others the many things that she is allergic to—that she has never even eaten). And people can’t even see her without someone madly drawing attention to her. Sure, I am certain that Good Samaritans and maybe even a friend or two will notice and pull over and madly wave their arms and scream like a lunatic out on the interstate until they have to move along to their own obligations. There will certainly be some who tell her that she can’t take this road too. Many will honk their horns, maybe even yell and scream at her. And yes, she has slowed the traffic even more. The situation is no doubt inconvenient for all, including Kate and her family but, this is her route in life.

As her mom, I don’t feel like I have a choice to hold her back. I have to educate her to be safe on her route. We will of course avoid rush hour (i.e. parties and events that are focused on food when we feel there is no alternative). She needs to be out there just like all kids do even if all she has is her tricycle. It is not fair for me to ask that the roads be cleared for her either, as everyone uses the same road and they have places to go too. All I ask is that you keep an eye out for Kate. Drive slowly (remember to wash your hands and face if necessary), read the signs (labels) and be prepared. If an event is less than two hours, maybe consider not serving food at all. I am constantly asking myself “Why is it necessary to serve a snack in Sunday school, soccer practice, meetings, play groups or even a preschool class that meets for a total of four hours a week?” Please avoid sending the semi-trucks near her. Those trucks carry deadly toxins and even a drip from the truck could make her very, very sick or worse, the trucks could slam into her and kill her instantly. Those toxins for her are all dairy products (milk, cheese, yogurt, creams etc.. including products containing whey (baked goods), casein and yes.. even Goldfish crackers), eggs (mayonnaise, ingredients such as albumin, globulin and many more), nuts (peanuts and tree nuts) and peas.

So, what can Kate have? For snacks and treats, she loves to eat all fruits (watermelon, banana, apple slices, berries, etc… and most vegetables (carrots, cucumber slices, cherry tomatoes, celery etc…), Rold Gold pretzels, Frito Lays, Regular, Chocolate or Chocolate Chip Teddy Grahams, Cheerios, Chex, Lucky Charms, Oreos, almost all fruit snacks, Dum Dum suckers, Laffy Taffy, Sweetarts and Smarties. For lunches, she enjoys “Soy Nut Butter” and jelly sandwiches, turkey or ham sandwiches, most hot dogs and hamburgers along with lots of fruits and veggies and on occasion plain Lays potato chips. We usually give her water, juice or rice milk to drink.

When in doubt, read the label or please feel free to call me. There should be a “Contains” or “Made in a facility with” statement on the label. At the very least, the top eight allergens will be in bold if they are present. We do not buy things that were not manufactured in the US since the packaging requirements may not be the same. She cannot have things that are made on the same line or in a facility with dairy, eggs, peanuts, tree nuts or peas either. If you are making something special, please consider letting me know in advance so that I can make something similar for Kate. She is no different than any other child in the desire to feel included. Thank you for considering Kate!

A final thought for her web page… getting a service dog for Kate in my mind is like giving her suitable transportation to handle the route she has to take in life.

 

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