Kiwi Allergy - Guest Post

Image Credit: Wikipedia

Today's post is a guest post.  A friend of mine has been kind enough to share her story, in the hopes of helping others.  As I like to do, I want to set your mind at ease and let you know that the story ends well, so no need to fret.  I know how it can be, reading stories like these, wondering how it will end.

Here is my friend's recounting of the events:

"Last night, I took my 6 year old daughter to the ER for an allergic reaction.  She is anaphylactic to peanuts and tree nuts, but we don't have any of that in the house, so I was shocked to see her face just swell up after dinner.   

We had shrimp, which we have often.  The next day, I kept going over and over in my head what could have triggered that reaction.  After a while I put two and two together.  I was so worried she had, out of the blue, developed an allergy to shrimp.  That was my first thought.  It wasn't the shrimp.  On Wednesday night, my husband has given her a bite of kiwi...she didn't like it, so one bite was it.  After a few minutes, he informs me that he thinks Alex has pink eye, because she kept rubbing her right eye and it became very red.  I dismissed it as dirty fingers and that was it.  The next night , after the shrimp dinner, I tried giving her a kiwi again.  She ate about 5 bites before deciding she didn't want anymore.  After a few minutes she started doing the same thing - rubbing her eyes a lot.  Then, her nose got stuffy and she kept on rubbing and rubbing her eyes.  Still, nothing clicks for me at this point.  I let her play with my iPad while I cleaned up the kitchen.   

About half an hour later, my husband yells for me to come look at Alex.  Her eyes were SO swollen she could barley open them.  It didn't seem to affect her breathing, so I decided to hold off on the EpiPen.  I gave her Benadryl and took her to the ER.  At the ER, they gave her an oral steroid and antihistamine and monitored her for a couple hours before releasing us.  I never would have suspected my daughter was allergic to any fruit so that is why I kept dismissing the signs - itchy eyes all of a sudden, runny nose.  I know I won't do that again!  I knew better!  When I did some internet searches I found that kiwi fruit is a common fruit allergy.  I even  found an article on livestrong.com that says if you are allergic to kiwi, it is quite possible you are also allergic to chestnuts and hazelnuts.  I couldn't believe it.  Does kiwi really have similar properties to some tree nuts?  If so, then that would make sense as my daughter is anaphylactic to tree nuts.  Just something I never would have put together.  I learned that with every new food she eats, regardless of what it is, I will watch carefully for allergic reactions and not miss something like itchy eyes."

I really appreciate my friend sharing her story, as I think we all need a reminder to focus on the symptoms we see and not whether they are expected/unexpected.  

She is taking her daughter to the allergist for a follow-up appointment.  Kiwi is also one of the many fruits known to cause Oral Allergy Syndrome, also known as "pollen food allergy syndrome", but that does not mean that it cannot cause serious reactions.

Luckily, my friend is already stocked and prepared to deal with an anaphylactic emergency, which I hope never happens, but I often worry about those with OAS/PFAS that do not have epinephrine.  Even if there's only a 2% chance of an anaphylactic reaction , that's still more than a 0% chance.  If any allergists would like to weigh in and let us know if they think epinephrine is warranted for cases of OAS/PFAS, I would love to know their opinion.  I have a feeling there are lots of people out there eating foods that make their mouths and throats itch, thinking that will always be the extent of it.

Generic Epinephrine Auto-injector Available

THIS POST IS NOW OUTDATED. 

Mylan, the makers of the EpiPen have now released a generic version of their device.

The Auvi-Q has returned in ownership to its original inventors and their company, kaléo. 

An updated post will be published.

As I wrote in my Adrenaclick Re-Launch post, I suspected that this re-launch might have something to do with the rumored generic epinephrine auto-injector (EAI) that we have been hearing about for a long while, now.  Sure enough, we found out that a generic is now to be made available.  Technically, it's the generic substitute for the Adrenaclick, but as you can read in my previous post, you should make sure your state/insurance company does not allow pharmacies to substitute the generic for other brands.

I called my local Walgreens to get some additional information.  I asked the pharmacy technician about the generic option and she had the pricing information (which they did not have at CVS or Wal-Mart), but no "notice of delivery" information has been provided.  She said that the state of Texas allows the substitution of generics if a brand name's patent period has expired.  She said she believed that the patent period for the Auvi-Q might be 7 years, but it could be as long as 14 years.  In either case, they would not substitute the generic for Auvi-Q.  That's good news to me!  (I will still be keeping an eye on it, though.)  She said the possibility of substitution was more likely with the EpiPen, since it has been around for a long time and its patent period has probably expired.  However, she currently did not see the generic epinephrine listed as "AB rated", so it was not eligible for substitution, just yet.

I also requested pricing information on the various EAIs:

Auto-injector Name	Price 0.15 mg "Jr"	Price 0.3 mg "Adult"
Auvi-Q	$294.99	$294.99
EpiPen	$361.99*	$282.62
Adrenaclick	$260.99	$260.99
epinephrine Injection, USP, auto-injector (generic)	$231.99*	$136.99

Current offers available, not reflected in prices shown:
Sanofi/Auvi-Q: $0 out-of-pocket offer (up to $100 off co-pay or cash price.)
Mylan/EpiPen: $0 co-pay offer (up to $100 maximum benefit.)

*I asked the pharmacy technician why the 0.15 mg dosages were more expensive.  She said that the formulation was newer and they were still recovering  R&D costs on it. (?)  I asked her why CVS' prices were the same (albeit higher) for both strengths, and she said it's probably because they purchase from a different vendor, who has made a different pricing decision.  The pricing of medications is messy stuff.  I'll have to check back with the other pharmacy chains when their pricing information is available.  All of this is further complicated by the details of individual insurance plans, wholesale agreements, etc.

So, I now see what purpose the Adrenaclick serves in the marketplace.  It provides a low-cost option.  It looks like it will be roughly half the price of the brand name EAI options, at least on the surface.  The price disparity will be smaller, once you take discounts (which are temporary in nature) into consideration, but I believe this is its primary purpose.  (I have a feeling other pharmacies will have the generic 0.15 mg dosage for a similar price to that shown at Walgreens for the 0.3 mg dosage.  Walgreens has a $20 prescription savings program that's good for a year and provides savings on most prescriptions.)

For more information about the EAIs that will be available, check out this post by Angela Nace, PharmD on Kids with Food Allergies:
http://community.kidswithfoodallergies.org/blog/available-epinephrine-auto-injectors-new-generic

Adrenaclick Re-launch

The Adrenaclick® was "before my time" as a food allergy mom, but I read on Avoiding Allergens and Onespot Allergy's Facebook pages that the Adrenaclick is being re-released in the U.S.  When watching the video for the device, it reminded me of a device that our support group leader had given me a trainer for, several months back.  I went to dig it up and it was the Twinject®, the Adrenaclick's sibling.  I thought I'd share some photos of the Twinject trainer, as it looks pretty much exactly like the Adrenaclick, aside from color differences.

I took a picture of the Twinject, outside of and next to its case, alongside the EpiPen and Auvi-Q, for comparison purposes:

Top: EpiPen trainer, out of its hard plastic case (which is probably not fair to the other devices when showing size...)
Second Row: Twinject device (trainer)
Third Row: Twinject outer case
Bottom: Auvi-Q trainer

As you can see, whether in or out of the case, the Twinject (and by extension, the Adrenaclick) is about the same size as the EpiPen, albeit a bit rounder in it's case, but as I said, the EpiPen is not in its light-protective case, either, so that will add some bulk to the EpiPen.  Both devices are obviously larger than the Auvi-Q™.

The Adrenaclick has two green safety caps, marked "1" and "2", to indicate the order in which they are to be removed.  The "business end" of the device is red, to let the user know to avoid touching that area.

Twinject trainer with first safety cap removed, to show the red tip...

Unlike the Twinject, the Adrenaclick does not carry a syringe-based second dose within the device body.  I can't decide whether that's a plus or a minus.  It's a minus, because you don't have two doses in a single device, but it's probably because people did not like injecting themselves with a syringe for the second dose.  Cutting out the second dose probably also reduces the cost of the device, which is always a consideration.  The Adrenaclick will come in two-packs.

Perhaps this will be marketed as a "generic" EAI, since it is old "technology", so to speak.  As long as it properly delivers epinephrine, though, that's the most important part, and if this device will be available at a lower rate than the other devices, then I think it fills a great need.  There are many at risk of anaphyalxis, or with children at-risk, and we need as many low-cost options for epinephrine, as possible.

Personally, my definite favorite is still the Auvi-Q, and it's only $25 with most insurance plans, plus I can get multiple sets with that single $25 co-pay. (There's a $0 co-pay offer through 12/31/2013!)  I think it's the most portable device and self-training, as well.  I will keep an eye out for pricing information, though, on the Adrenaclick, and pass along the information, as it becomes available.  (Here's a link to the post with preliminary pricing information.)

UPDATE:  This morning, I received an email from the Allergy & Asthma Network Mothers of Asthmatics (AANMA.org - you should consider joining!), and apparently, the makers of the Adrenaclick are marketing their device as a generic via Lineage Therapeutics called "epinephrine injection, USP auto-injector".  Here's more from their email:

This product, marketed as a generic epinephrine auto-injector, is an "authorized generic" of the Adrenaclick auto-injector only.

The availability of this product could result in substitution for other epinephrine auto-injectors at the pharmacy, leading to confusion.

Epinephrine auto-injectors look and function differently from one another. Each has different instructions for use and requires different training. You may be trained on one type of auto-injector, and the pharmacy may provide another for which you were not trained to use.

During the stress of an anaphylactic reaction, this could result in a delay or perhaps an error in the administration of the drug. Time is of the essence during an anaphylactic reaction. Make sure you are well prepared with the proper prescribed medication. No surprises!

When having a prescription filled, patients or caregivers should reinforce with the pharmacist the importance of getting the specific epinephrine auto-injector their physician prescribed and that they are trained to use. Be sure to check the bag before leaving the pharmacy drive-through or counter. Accept no substitutes!

View each type of epinephrine auto-injector and the instructions for administration at the respective product web sites:

• www.epinephrineautoinject.com
• www.adrenaclick.com
• www.auvi-q.com
• www.epipen.com

Visit www.aanma.org for more information on the signs and symptoms of anaphylaxis, as well as how to ensure you are prepared in the event of an emergency.

Vaccine Update - Our Experience

A friend asked a question about vaccines and I realized that I never followed up on a post I wrote about my daughter's delayed vaccine reactions!

When my daughter had her 4-year set of vaccines, the pediatricians office actually did let me space out the vaccines by a week or so, plus they let me read the ingredient inserts and found an alternative formulation for me that consolidated a couple of vaccines into one shot that didn't have ingredients that I was wary of and that reduced the total number of shots.

My daughter was also given her MMR vaccine, which has an egg allergy warning on it, yet doesn't actually contain egg.  She did not have a reaction to that vaccine, like she did with the flu shot, but the flu shot actually contained egg protein.

I asked the doctor if there was anything preventative that I could do to keep my daughter from having a reaction to the shots, but he said there really wasn't anything to give her and I've read in the past that you don't want to give them fever reducers, because it would mask a reaction and you actually want to know that they are reacting and not have it hidden from you, since fever is the body's signal that something's wrong.    I watched her closely, that night, and for the days following, and thankfully, nothing happened.  She went in for her second vaccine (the MMR, which was given separately) and that one also went without incident.

At this point, I no longer feel that vaccines caused my daughter's food allergies, as I've heard from many with un-vaccinated, food-allergic children. (Edited to add: Um, I think I need to re-word that...What I mean is, given that there are children who are un-vaccinated who have food allergies, I don't feel they can be the sole cause.  When I re-read it, it seemed like I was stating that those with un-vaccinated children were telling me that vaccines caused food allergies, which is not what I meant! :O)   However, I think great care should be taken when administering vaccines to allergic children and I think they should be allowed to space them out, if they contain food-related ingredients, so parents and physicians can spot reactions.  If they are all given, at once, it would be hard to tell which one caused the reaction.  Even with the reactions she experienced, I am still glad she was vaccinated, as the reaction is the "lesser of the evils" compared to the diseases which they prevent.  I do take each vaccine under consideration, separately, and would advise parents to discuss their child's vaccines with their doctor, especially if your child has multiple food allergies.

Beach Condo Trip with Multiple Food Allergies, Eczema and Asthma

Background: My daughter's allergic to cow's milk, eggs, peanuts, tree nuts, flax seed, mustard, peas, and she is sensitized to wheat, which we are currently avoiding, along with sesame, which we suspect as another allergen, but that has not been confirmed.  She also has eczema and asthma.

Last year, we made a family trip to the beach, and Eczema Blues was kind enough to ask me to do a guest post about our trip.  This year, we decided that we would try renting a condominium, instead of just a hotel room with a refrigerator.  We really loved the hotel we stayed at last year, as it's right on the beach, but having a full kitchen really suited our needs, much better.  In fact, it was cheaper than the hotel, since we were staying in the last month of the off-season!  Even though it's a great deal of work to pack enough food to cook for the whole trip, plus the fact that I had to cook all the meals for the trip, it was much better than the stress of having to still prep all her meals to take down to a restaurant, wipe down tables, worry about the foods they're serving, etc.  This way, we could eat in a more relaxed environment, at our leisure, and in our lounge clothes, if we so desired!

So, if you read my guest post, you'll see the standard load of things I pack for a trip, but here are some additional things I needed for this trip: (We stayed 3 nights - Thursday, Friday, and Saturday night and left on Sunday...) (Amazon affiliate links benefit FARE.)

• Rice cooker - to cook rice and quinoa 
• Allergy-safe dedicated cooking/eating items: mixing bowls, pans, silicone spatula, measuring cups/spoons, eating utensils, plates, cups...The room had them for us, but I wanted our daughter to have her own clean/safe items for her food/drink.
• Sheets for the bed - I had been planning to buy an extra set of sheets for her bed at home, so I could swap them out for washing more frequently, so I bought them ahead of this trip, to lay over the top of the bed sheets. 
• ...and, of course, food for breakfast, lunch, and dinner, plus snacks, for the three of us, plus one lunch with Grandma and Grandpa (I always cook too much food at lunch, so we had plenty and were SO happy they were able to come for a short visit!)
• Here are some of the snack foods I brought along:
• GoGo Squeez - Apple Apple
• No Nuttin' Apple Cinnamon Granola Bars (Top 8 Free and free of mustard, sesame and sulfites!)
• No Nuttin' Granola - Vanilla Caramel
• YogaVive Apple Chips
• Terra Blue Potato Chips

Things I forgot to pack, that I need to remember, for next time:

• Sponge for cleaning allergy-safe dishes/utensils
• Safe dishwashing soap (we use free & clear cleansers)
• Safe hand cleanser (Cetaphil)
• Scissors for opening food packages
• Zipper bags for storing leftovers/open packages
• Chip clips

If you have the option, reserve a unit with tile floors, to minimize the allergens that could get trapped in carpeting, which can aggravate eczema and asthma.  You might also consider using a product like the Vent Mask, though I totally forgot to bring ours with us - shucks!  When we arrived, I got out one of my ever-present packages of wipes and wiped down the usual touch-prone surfaces - counters, door knobs, chair arms, sink edges, toilet handle, refrigerator handle, etc.  Yes, I am just a wee bit obsessive, (which is funny, because I can  be so messy, at home), but this was not our place and I don't know about you, but I often imagine that people have just recently eaten a peanut butter sandwich, with a side of Cheetos and proceeded to wipe their hands on everything. :O

This trip was our best one, yet, and I was so very happy.  We didn't have any incidents, other than one random hive on the first night, that was quelled with a dose of Allegra.  Beyond that, she didn't have any asthma or eczema issues, which was fanstastic!  I hope some of these tips help you all and if you have any additional tips to share, I'd love to read them.  Enjoy your summer and stay safe!

Milk Did My Body Wrong

I've been wanting to tell about my journey to being milk-free for quite a while, but it's such a long story (not that many of my stories are ever short!), so here we go...

Let's start with some background... [Disclaimer: I'm not a dietitian, nor a doctor.  These are my personal opinions and a recounting of my direct experiences.]

I used to love cheese.  Sharp cheddar, mild cheddar, mozzarella, shredded cheese, queso dip, cream cheese, cheesecake, parmesan cheese, but surprisingly, not sour cream.  I loved cheese the way people love chocolate.  (As amazing as it might be, I do not like chocolate - I never have and doubt I ever will.)  When answering those surveys that asked "if you could choose one food to live on for the rest of your life, what would it be?" my answer would invariably be cheese-related.  I used to buy a block of sharp cheddar and slice it and eat it for a snack.  I would shred it for certain dishes and hardly end up with enough for what I was making, because I kept eating it as I was shredding it.  Have I sufficiently established the love I had for cheese?

Now, as I write about all that cheese, I get a queasy feeling in my stomach.  I never thought that would happen.  I was known for my love of cheese and may still be, to those who haven't talked to me in a long while.

How did this happen?  Well, it was through a series of events that I did not plan, nor foresee.  As some of you might know, my daughter is anaphylactic to milk protein.  I was so addicted to my precious cheese that even though I stopped buying it at the store, I would bring home take-out foods that had cheese in them, and just wash my hands feverishly, brush my teeth, etc.  (She never reacted to cheese contact, but I am still super-careful and now we just don't have it in the house, at all.)  At least a year and a half ago (I'm losing track of time) I was going over our finances and realized we were spending a ridiculous amount of money on take-out food.  We made all our daughter's meals, but for ourselves, I'd often just pick us up some admittedly very unhealthy fast-food meals, thinking that I didn't have time for anything else.  I made a decision to cook more meals at home and since we didn't keep cheese in the house, that incidentally lead to a dramatic drop in my cheese intake.  (I was never a milk drinker, so the majority of my "milk" intake was from cheese products, and lots of them!)

Another thing I should explain is that for the past several years, I had chronic sinus problems.  After my daughter was diagnosed with food allergies, I decided to get blood testing done, just to see if anything came up and no foods showed up, but I did the skin prick testing for environmental allergens and I was allergic to all kinds of things - Mountain Cedar, different grasses, dust mites, etc.  I figured that explained why I had a 400 mg/day ibuprofen habit.  I had tremendous sinus pressure that sometimes made me wish I had a hinge on my nasal area, so I could open it up and take out whatever gunk was inside, torturing me.  (Sorry for the graphic image, but that's how terrible I felt, sometimes.)  I took ibuprofen, almost daily, for around 3 years.  That could not have been good for me.  I was in and out of Urgent Care facilities every few months, with sinus infections.  Whenever the pollen levels rose, I would sit and try and press on pressure points on my face and try to make the pain go away, because I didn't want to take any more medicine.  Oh yes, I was also taking Allegra and Nasonex.  All 3 of these medications still didn't keep the sinus infections at bay and I would be on antibiotics a couple of times a year.  One time, I had to get a steroid shot and it triggered an episode of my periodic paralysis (I have a condition called Hyperkalemic Periodic Paralysis).

So, after a while of not having mega-quantities of cheese in my diet, I was sitting around one day and thought, "Hey, I haven't made the drive to Urgent Care, lately...I haven't taken any ibuprofen in a while..."  I also noted that, um, how do I put this...I had become more "regular" and didn't seem to have any "issues" in the bathroom department, lately.  For the longest time, I thought I suffered from undiagnosed IBS (sorry for the TMI, folks, but it's part of the story) and I was realizing what it was like to have a regularly functioning system. 

I thought to myself, "Could it be my beloved cheese? No way!"  As any addict in denial, I didn't want to believe that my precious cheese could be causing me any harm, so when I had the chance to eat queso dip, outside our home, I ate a whole bunch and felt terrible, afterward.

D'Oh!  I almost forgot, I also used to get super itchy skin!  I have dermatographic urticaria/dermographism, which is a condition where the skin basically gets a hive and/or turns red where it is scratched.  It's not quite as dramatic as some of the pictures shown and I can't make "art" with it, but I used to lie in bed at night and itch and itch and itch and I'd have to go borrow my daughter's eczema lotions and prescription-strength hydrocortisone.  I'd go look in the mirror and see that I had scratched myself all up in my sleep.  I had a definite glimpse into the eczema life.  The dermatologist just said, "yeah, eczema can pop up in your 30s, even if you never had it, before."  OK, thanks.  I also had keratosis pilaris on the undersides of my arms, which made me self-conscious about wearing short-sleeves, sometimes.

After my cheese binge, I was so itchy, again, and later in the week there were high pollen levels and I was not enjoying myself.  That was all the convincing I needed and I was done with cheese.  I hadn't eaten ice cream in a long time, so I didn't have to give that up.  The last thing I had to switch was my butter, which I changed to Earth Balance Organic Whipped Buttery Spread.  I didn't go so far as to avoid traces of milk, since I'm not anaphylactic like my daughter, but I avoid it as much as I can.

Since ridding my diet of dairy, I'm now free of so many ailments that I had absolutely no idea were tied to my dairy consumption.  No more sinus problems, no more tummy troubles, no more itchy rashes, no more bumpy/KP-ridden arms, and I lost 8 pounds!  Another thing I should note is that about 8 months after giving up dairy, I also gave up Coke, which was my other beloved "food item".  I was equally enamored with Coke.  Not Diet Coke, not Cherry Coke, but Coca-Cola Classic.  I had Coca-Cola Christmas ornaments!  When I gave up Coke, I lost 7 pounds and stopped getting the headaches that I thought my Cokes were helping all that time.  Like any drug, it treats your pain, then gives it right back to you, so it can "treat it" again, for you.  I also thought I needed my Cokes for energy, but it turns out they were responsible for my afternoon "crash" and not treating said crash, at all.  I still get a little tired in the afternoon, but not like I used to feel, by far.  The only thing I drink, now, is some fruit juice in the morning with breakfast and water the rest of the day.

If you do some research on cow's milk, you're in for a world of surprises.  I strongly suggest you check out www.notmilk.com.  Click on the article links for "asthma", "allergies", and "sinus".  Look at all the other conditions linked to casein/milk.  Read "The Famous Milk Letter".  It is LONG, but full of interesting information.  If I had read this before my accidental "milk weaning", I might have thought it to be a bit too "tin foil hat", but boy do I believe it, now.  Nobody with asthma should have milk in their diets, in my humble, yet now passionate opinion.  Anyone with internal organs that they care about should seriously consider how reducing/eliminating casein from your diet might positively impact your life.  I think if more physicians handed out prescriptions like these, we'd see a dramatic drop in a long list of health problems:

Image edited from emeddecorandmore.com

I personally think the slogan "Milk - It Does a Body Good" is one of the biggest untruths perpetuated since the days when cigarettes were recommended for asthmatics.  Ridding your body of milk protein is something you can do to "cure" yourself of so many ailments, without taking a single pill.  There's no special set of herbal remedies that you need to take for this magic to happen.  I didn't need any supplements.  I didn't need to add anything; I needed to SUBTRACT something that was hurting me.  The issues I had with milk were not like my daughter's.  I'm not anaphylactic to it - I wouldn't have immediate, acute, obvious reactions, so I might have gone on my whole life, suffering all those problems, thinking that's "just the way it is" and that "I just have seasonal allergies" and "I just have a temperamental tummy", etc.  I loved cheese so much that there was no impetus for me to stop eating it, until I was forced to by circumstance.  There is a very short list of things I am thankful for with my daughter's food allergies, but this is one of them.

I hope if anyone else is out there suffering, that you will really take this to heart and consider doing something about it.  I know it can be hard to make changes, but I also know it's completely possible.  My daughter has a healthy diet that does not include cow's milk, eggs, peanuts, tree nuts, peas, mustard, or flax seed.  She is living proof that cow's milk is not essential to survival!  I used to think nothing was worth eating, if it didn't have cheese and now I think, "why must they add cheese to everything?"  It's funny how your perspective can completely shift.  All I know is that when the pollen levels rise, now, I hardly even take notice.  I don't have constant sinus pain.  I don't scratch in my sleep, anymore.  I'm not taking a handful of pills and squirting steroids up my nose, daily, anymore.  I also promise that I do not miss cheese, at all.  If *I* can live a life without cheese, I think anyone can do it!

(Note: Dairy is not the only culprit in the "usual suspects" lineup, so if you do eliminate milk and don't feel completely alleviated, you might also have an issue with gluten, which is another top offender.  You might have to do an elimination diet to find the exact mix of foods that are causing your particular problems, as everyBODY is different, but don't discount for one minute that food can be behind the majority of your chronic ailments.  I wish you the best of luck in your quest for better health.)