Sunday, August 24, 2014

Reflections: Face of Food Allergies

The responses written to The No Nut Traveler in reference to the article that appeared on Yahoo were absolutely appalling.  All that was being asked was for fair and consistent policies from the airlines in regards to traveling with nut allergies. No one was asking for anything unreasonable.  Being able to BREATHE and LIVE isn't an "entitlement" as some like to call it.  Unfortunately for people like my daughter, others often feel that their right to eat whatever they want whenever they want wherever they want trumps her right to LIVE.  Guess what?  IT DOES NOT.  HUMAN LIFE COMES FIRST.  ALWAYS.  I cannot believe I have spent two days even blogging about this??!!  Isn't this common sense?!?!

After reflecting on yesterday's blog, I decided that food allergies need a face.  I am hoping that giving a face to food allergies will help others to recognize that people with food allergies are people YOU probably see and come in contact with everyday.  I hope that putting a face with food allergies will show that the negative and rude responses ARE PERSONAL to us- that these allergies are truly life and death.   These people with food allergies are our families, children, co-workers, friends, and neighbors.  Food allergies could easily effect you or your family- the face in the picture could be you or your child.

I am asking that if you are comfortable sharing a picture of your loved one with a food allergy on social media, you do so and pass it on :-)  I shared my beautiful picture of Molly on Twitter, using the hashtag #faceoffoodallergies

Saturday, August 23, 2014

FLYING in MY SHOES

I decided to blog today not about OIT but about food allergies and airlines.  This is something that does effect Molly AND I won't lie, it's difficult to fly.  This topic has recently received global exposure because two beautiful little girls with food allergies had reactions on planes.  My heart goes out to their families because I understand that feeling of terror when you realize your child is having a reaction that requires epinephrine.  I cannot imagine the feeling of terror and panic they must have felt not only from the reaction but from knowing that you are on a plane and you cannot immediately remove your child and get them the medical attention they require in the Emergency Room.

The No Nut Traveler has been speaking out on this issue since an airline company was not only rude but spoke in a very inappropriate manner in front of her son.  As a food allergy mama myself, I know that we DO NOT in fact need the airline staff to remind us that yes, our children's allergies COULD in fact KILL them.  We pretty much had that covered the first time we saw one of our children struggling to breathe because they were exposed to peanut or nut.  We had that covered as they are gasping or wheezing, covered with hives and we our using our Epi-pens or Auvi-Q's and rushing to inject them with life saving epinephrine, calling 9-1-1, and praying it's enough to save their lives.  Yeah, I guess you could say we kind of figured out that a simple little nut could kill them the hard way.  For me, that moment was when my daughter was 7months old and I got a small smear of peanut butter on her skin from a bagel I was eating...a few minutes later we are in the ER because she couldn't breathe, developed a mark on her skin where the peanut butter had been similar to a cigarette burn, hives, and swollen puffy eyes.  We left the ER that day with a prescription for an Epi-pen and a changed life.  HOW COULD SOMETHING SO SMALL- SO COMMON- come so close to causing death to my little girl?

So- now that we have that covered I want to address the responses to this article: 
https://www.yahoo.com/travel/airlines-and-nut-allergies-95399512052.html?soc_src=mags

First and foremost- all though I know it might be a slight inconvenience, I hope that you can respect that a person's right to live trumps your right to eat nuts wherever you want always. PERIOD. END OF SUBJECT. 

Epi-pens and Auvi-Q's are temporary solutions.  Sometimes they don't work.  Sometimes CHILDREN and adults die.  They have to be given quickly after exposure and require immediate medical care in an Emergency Room.  At the ER most likely we will get more Epi, steroids, antihistamines, nebulizer treatments, oxygen, and hopefully that will be enough to overcome the allergy exposure.

I am not flying to inconvenience you or anybody else.  This past year, we had to fly for my daughter to receive medical treatment for her food allergies.  Sometimes we have emergencies, deaths in the family, rush medical appointments and we have to fly.  Since we have a global economy, it is not uncommon for ALL people, including those with food allergies to fly.  Sometimes we just have to fly because we need to get where we need to go too.

I hate to fly- and I hate to fly even more with my daughter's nut allergies.  We alert the airline that she has nut allergies and carries and epi auto injector when booking flights.  We were told to alert the agent at the desk on arrival, have notes from your doctor, original prescription labels on her auto-injectors.  We did all this.  And were told, there is NOTHING I can do about nuts on the plane, we don't serve peanuts <<insert desk agent eye roll>> OK.  I, as her mom, can wipe down seats and put a blanket on them.  I can do things to make her "more safe.".   BUT please don't be rude to me--I am not asking you personally to do anything just to be aware-- AIRLINES serve food just like restaurants and we ALWAYS tell our server that we have peanut and nut allergies-- if there is food-- speak up!!  When you are in the air- unable to get to a hospital wouldn't it be good for the flight attendant to know that she carries and Epi auto injector just in case she needs it??!??  I am training her to be responsible with her food allergies- she will be grown up someday and I won't be there by here side all the time.  She needs to know how to keep herself safe and how to SPEAK UP for herself.  So please, keep your rude remarks to yourself.

Most airlines that still serve snacks could offer an alternative to peanuts or nuts.  Some already do.  Most food allergy families carry tons of yummy alternative snacks and  would share our prepackaged safe snacks with you so you don't eat that snickers bar and cause someone to have a serious allergic reaction.

And as for the comments about how families suffering from food allergies live their lives, most of us make accommodations in our lives that  YOU would NEVER, IN A MILLION YEARS, think about.  We read every food label every time at least three times, we can tell you at least 2 other words that mean hidden peanut or nuts on food labels, we know where to buy safe substitutes for most things, we have moved seats at baseballs games and other sporting events so that we don't inconvenience you if you are eating nuts, we wipe down seats, toys, and playground equipment not because we are helicopter moms, but because your child just ate peanut butter and put xx in his or her mouth or didn't wash his or her hands and has visible peanut butter and then touched the movie seat next to my daughter... we don't eat out without careful planning and we don't go to Chikfilet, or Five Guys, or Texas Roadhouse.  We ask about oils and what's in things-- we ask about cross contamination.  We don't go to bakeries or donut shops.  Trips and vacations require months of planning for safe accommodations, restaurants and activities-- our lives require lots of planning- and PRAYER, because we take chances everyday, because FOOD is everywhere- and to us something like a peanut or walnuts or cashew--or even a cookie or sandwich could harm our children. 

As far as nut allergies and the plane- all we are asking is for consistent rules and minor accommodations.  Everyone should have the RIGHT to be safe when traveling on a plane.  END OF SUBJECT.

Molly sitting at the airport waiting to board our flight

Thursday, August 21, 2014

...and we're back LIVE from the LONE STAR state

We are back- finally!  Sorry it's taken so long to update everyone.  Unfortunately, it took 3 months to get internet service in our new home.  It was a complete nightmare, lots of tears have been shed over internet access and the lack there of- but now it's over and AT&T FINALLY came through.

Molly is doing well with updosing.   We have had only had one set back and it was actually this week.  This week we progressed to eating one whole cashew.  I'm not sure if it was nerves or if she just wasn't ready yet, but the cashew caused her to vomit.  So we tried a 2nd dose and again Molly immediately started vomiting.  After talking to Dr. Sugerman, we decided the best course of action would be to go back a dose, back to the capsules of cashew flour and not the whole nut.  Molly has taken that dose with no issue today so hopefully we are back on the upswing of OIT. 

Molly does not like the taste or texture of nuts.  There is question to what will Molly's limit of nuts be because she will have to eat a certain number of nuts EVERYDAY. EVERYDAY F-O-R-E-V-E-R everyday.  And since she is de-sensitizing to cashew, peanut, and walnut, that means it's just isn't one type of nuts, it's all three.  As of right now, it looks like 4 of each nut *might* be our magic number.  As a mom I'm not sure how I feel about this, because it will still limit what she eats.  She will have protection if she accidentally has a bite of a peanut butter cookie and won't have anaphylaxis, but she won't be able to sit down with a payday bar or eat a piece of pecan pie.  Maybe the later items were just my yearnings for her to have a "normal" life.  I'm not sure they even really matter, because she HATES nuts- the texture, the taste, the smell so she has NO desire to eat a payday bar or pecan pie.  And, at the end of the day, protection against anaphylaxis is our main goal of de-sentization/OIT.  The verdict is still out on what our final nut number will be, and ultimately it will be what Molly can tolerate AND what keeps her safe.