An EpiPen Experience

Let me first start out by thanking the mom that is allowing me to post about her family's recent experience requiring an EpiPen.  She originally shared her story with members of the Parents of Allergic Kids Yahoo Group.  There is some really good lessons that I'd like to share with my readers so I asked if I could also publish her experience on my blog.  Here's her story:

"My son had an allergic reaction which resulted in the use of the epipen. This is only the second time that he has needed the epipen in his 13 years.

But the good news is: the EPIPEN WORKS!!!!

My son is allergic to peanut, treenut, dairy, egg, sesame, mustard. We also avoid fish and shellfish. The reaction occurred at a restaurant we visit quite regularly…the manager knows us and they get his food started when they see us walk in. The reaction started when he took bites of chicken and carrot and had some of his drink…so, we're not sure where the contamination was.

His tongue and throat felt itchy and his throat started feeling clogged. He took Benadryl. I asked him if maybe he was feeling itchy and had a lot of mucous because he had stopped his Zyrtek (in anticipation of upcoming allergy skin test) - this happens to him sometimes. He said that he knew he was having a reaction because the water felt like it was barely trickling down his throat…he said that it was like it went into his throat but it was going down one drop at a time. On way to hospital by this time. I kept telling him to drink his water…wanting to monitor his swallowing plus hoping to get the Benadryl in his system faster. He said he thought he might be a little better so I thought the Benadryl might be working. Then, 1-2 minutes later, he said that all of the sudden he feels like there is something huge stuck in his throat and like someone is sticking a knife in the bottom of his throat. Pulled over and did Epipen.

Last time he needed the Epipen, I was holding the Epipen and my husband was coaching me to "do it." This time, I was telling my husband to do the Epipen.  When you're the one holding the Epipen - it's difficult to convince yourself that you need to give the shot. Soon after he had the Epipen, my son described the feeling to me as 'all the stuff in my throat is dissolving and now I can swallow.'

Normally - the appropriate protocol is to call 911 after giving the Epipen. We were close enough to Levine Children's Hospital and the Epipen was obviously working so we drove there and I called to alert the ER that we were on our way. They kept us until it had been 4 hours since the "incident" and also gave him oral steroid.

Of course, ask your doctor for the best individual action plan because I'm not qualified to give this kind of "advice." But, I learned recently (since the reaction) that at the first sign of any throat symptoms - give the Epipen. I had always thought that you should start with Benadryl. However, the Epipen is not scary, does not hurt and works quickly and effectively.

One thing the hospital didn't tell us…which I think they maybe should have…was to keep Benadryl in his system for a while. That evening, he looked and felt terrible - pale, shaky, nauseous - so I called our pediatrician just to get reassurance that all of these symptoms are expected side effects of meds. since it was already about 7 hrs. since Epipen and 5 hours since oral steroid. The pediatrician said she suspected that he was feeling side effects of meds - probably steroid - and she also told me to give him another dose of Benadryl.  After she suggested that…I remembered that we got that same recommendation after his reaction 3 years ago. However, at hospital discharge, they did not tell us to give a follow-up dose of Benadryl…wonder why that wasn't part of their protocol."

I really hate that she and her family had to experience this, but I'm so glad she shared.  The part describing what her son was feeling as his throat was swelling was particularly moving, but also very helpful if I ever needed to help Abigail identify what she was experiencing.  A few take-aways: 1. No matter how many times you frequent a restaurant or purchase what you feel is a safe food brand, for people with severe food allergies, there is always a risk.  I feel most confident with manufacturers that label a food allergen if there's  even a small risk of cross-contamination, and of course, if I prepare the food myself.  2.  Always carry an EpiPen and do not hesitate to use it if the situation calls for it.  Our doctor at Duke told us that if in doubt (obviously there's no doubt if someone is having difficulty breathing) the best way to tell if you should use an EpiPen is if multiple systems are reacting.  For instance, if you are experiencing hives (a skin reaction) and vomiting (a stomach reaction), use the EpiPen and then call 911.  3.  I had not heard about continuing to use Benadryl even after leaving the hospital.  It's good advise.

I truly believe that the best way to arm yourself and loved ones against the life-threatening effects of a food allergy is knowledge.  Thanks to this mom for giving us another lesson.

Celebrating a 40th Birthday!

No, not mine.  At least not yet.  This weekend, we celebrated my husband's 40th birthday.  Actually, we celebrated it last weekend too.  After Thanksgiving, we spent several nights in the NC mountains.  One afternoon while there, Abigail and her brother helped me surprise their daddy with a party complete with cake, 40 candles, a banner they made and party hats.  And, this weekend, the kids stayed with my parents (thanks mom and dad!) so that we could have a kid free weekend.

Purchasing bakery cakes is pretty much out of the question when you have an allergic family member.  I make all of our family's birthday cakes.  For my husband's birthday, I traditionally pick up a box cake mix (Pillsbury or Betty Crocker because of their good allergen labeling practices), a can of frosting and a jar of sprinkles.  This year, I'm making a serious effort to try to eliminate the additives and other junk ingredients from our diet, so I thought I'd bake a cake from scratch.  It turned out so good and was so easy to make that I wanted to share.

I found a recipe for an Old Fashioned Gingerbread cake on www.allrecipes.com.  After reading through many of the reviews and recipe suggestions, I found a version that sounded fabulous.  Here's the recipe:

1/2 cup white sugar

1/2 cup butter

1 egg

1/2 cup molasses

1/2 cup pumpkin puree 

2 1/2 cups all-purpose flour

2 teaspoons ground cinnamon

2 teaspoons ground ginger

1/2 teaspoon ground cloves

1/2 teaspoon salt

1 cup hot water

Preheat oven to 350 degrees.  Grease and flour a 9" square pan (I used a 9" springform pan).  In a large bowl cream together the sugar and butter.  Beat in the egg and mix in the molasses and pumpkin puree.  In another bowl sift together the flour, baking soda and spices.  Blend this into the creamed mixture.  Stir in the hot water and pour into the prepared pan.

Bake 40 to 45 minutes or until knife inserted in the center comes out clean.  Allow to cool in the pan before serving.

I used organic butter, flour and pumpkin puree.  Because we were heading out of town, I made the cake in advance and froze it which made it easy to transport in the cooler.  I thawed it in the refrigerator and then heated it for a few seconds so that I served it warm.  For an extra treat, I even made the whipped cream topping.  I will continue to make our own now that I know how easy it is.  It's so much better for you than the frozen whipped topping and canned whipped cream at the grocery store.

My husband and kids loved the gingerbread cake.  I even let Abigail eat a piece several mornings for breakfast thinking that it was better for her than a frozen waffle or bagel.   I'll definitely make this cake again...maybe even for Christmas morning!

Enough about the cake.  I want to wish a Happy 40th Birthday to my wonderful husband!  Here's to another 40!  Thanks for being such a fabulous guys!  Love you!

Too Much Rain

We were scheduled to go to Duke yesterday for Abigail's final dose increase before hitting the maintenance stage of the trial.  After hearing the forecast, I decided to postpone our appointment until next week.  I know that sounds crazy, but the weather forecast called for heavy rain here, there and all the way in between.  It seems like every other visit to Duke I'm driving in heavy downpours, and it is miserable.  Besides, the kids are staying with my parents this weekend and will already be three quarters of the way to Duke.  Made more sense to swing by and pick up Abigail Monday morning and head to Durham as opposed to going Wednesday and then driving both Saturday to drop them off and Sunday to pick them up.  Unfortunately, Abigail will miss a day of school, but then again, she is only in the 1st grade.

So we'll go on Monday, and then not again until the end of January.  That visit is only scheduled to take 45 minutes but will be a lab visit meaning a blood draw, skin prick test and saliva collection.  Given our tract record, that visit might actually take more than 45 minutes.  After that, we don't go back until mid April when we'll discuss the logistics of the food challenge which will be the end of May.  In the meantime, I'll be checking in to find out the results of all of the food challenges prior to Abigail's.

I've attached a link to an ABC News segment.  It features Dr. Burks discussing the clinical trial research.  What's neat about the segment is that you can see where we go every visit, how the drops are administered and even see some of our great nurses.  Here's the link:

Children's Food Allergies Escalate

I'm working on my first ever product give-away.  I'm quite excited about it.  Hopefully by next week I'll have all of the details worked out.  So, visit again soon.

A Lot to be Thankful for....

In the hustle and bustle of everyday life, I often lose site of how very much I have to be thankful for.  It's been another one of those days.  Laundry, baking for Thanksgiving, cleaning house, packing for a weekend trip, worrying about a sick child, running errands, and now, absolute exhaustion.  Even now, I'm multi-tasking.  I have a "to do" list beside me, I'm trying to catch up on a few shows, and obviously, I'm writing this post.  How does a mom learn to just simply enjoy, to count her blessings?  At least this mom!

Regardless of the chaos, I do have an incredible amount to be grateful for.  In this time of economic turmoil, we've got a handle on our finances.  My family is healthy minus a couple of bouts with H1N1, some sinus infections and a case of bronchitis (my 2 year old has that now).  I'm married to an incredibly supportive man who puts up with all of my tangents and soap boxes. My kids are sweet, smart and well-behaved, at least with everyone else.  And now, this year, our family has this peanut allergy clinical trial.

We are blessed with an opportunity to change Abigail's life, and I'm very much aware of the fact that there are parents all over the country that would love to have the same opportunity for their child.  Abigail could come away from this trial with the ability to consume peanuts without the risk of a life-threatening allergic reaction.  Whether it's the ability to consume a handful of peanuts or just eat a baked item manufactured in a plant with another peanut product, her life is still changed.  And for that, I am extremely grateful.

So, thank you to our great doctors and nurses at the Duke Clinical Research Unit, to our parents who have provided many hours of childcare to our youngest as well as hours of listening to me discuss the trial, our concerns and our progress, and to you guys who give me an outlet to share all my research.

Hope everyone has a great Thanksgiving.  Enjoy your day, travel safe and count your blessings!

IgE Numbers, Part 2

At our visit to Duke this week, I was able to spend some time talking with one of the wonderful nurse practitioners about the upcoming food challenges.  Several of the Peanut Sublingual Immunotherapy participants are quickly approaching the 12 month mark and the first challenges are scheduled for December 10th and the 14th.  I mentioned how I was anxiously awaiting the results, and she very quickly reeled me back in. With this being the first peanut sublingual study for children, there are a lot of unknowns.  It's very possible that the first food challenge won't show significant results and may even mean a change to the study protocol.  I'll still call soon after the challenges to find out the results, and hopefully, the kids consume the equivalent of a peanut or two.  If they don't, then we'll keep pushing through, Abigail will keep taking her drops and we'll hope that with more time we'll all see the results we are hoping for.

I'd love to be able to see Abigail's IgE numbers over the course of the study, but they are sealed until the end.  The goal is to get her number down from 14 to a single digit.  At a single digit, her chance of having a allergic reaction drops significantly, as well as the risk of anaphylaxis.  She'd still be allergic to peanuts, but her allergy would not be life threatening.  Abigail would be considered "cured" of her peanut allergy if her number was a 1 or less.  She's had two blood draws to determine her IgE number since starting the study.  The first was the baseline (which was 14), and then again at 4 months.  Her next blood draw is at the 8 month mark.  We can't see the numbers so that we don't get discouraged if they're not changing.

IgE numbers only tell the percentage chance of having an allergic reaction, they do not tell the type of reaction or severity.  Whether the IgE number is 14 or 364, there is still a 95% chance of having a reaction.  I'm going from memory (which is often a risky proposition), but I seem to recall that when Abigail was tested at age 2 and scored a 12, she had something like an 80% chance of having an allergic reaction.  In fact, the doctors at Duke are seeing a trend that their patients with lower IgE numbers are having more severe reactions than those with really high IgE levels.

So, there is a possibility that Abigail's score of 14 might mean that she would have a more severe reaction than a child having a score of 364.  I do feel that she has an advantage starting the study with a lower number. Doesn't it stand to reason that the lower the number, the less distance one has to go to get to single digits? Maybe it takes less time to build up a tolerance to peanuts with the sublingual therapy?

Here's a table that I copied from Wikipedia that shows IgE levels and their correlating allergen scores using the RAST test method.

RAST rating	IgE level (KU/L)	comment
0	< 0.35	ABSENT OR UNDETECTABLE ALLERGEN SPECIFIC IgE
1	0.35 - 0.69	LOW OF ALLERGEN SPECIFIC IgE
2	0.70 - 3.49	MODERATE LEVEL OF ALLERGEN SPECIFIC IgE
3	3.50 - 17.49	HIGH LEVEL OF ALLERGEN SPECIFIC IgE
4	17.50 - 49.99	VERY HIGH LEVEL OF ALLERGEN SPECIFIC IgE
5	50.0 - 100.00	VERY HIGH LEVEL OF ALLERGEN SPECIFIC IgE
6	> 100.00	EXTREMELY HIGH LEVEL OF ALLERGEN SPECIFIC IgE

Here are a couple of other things I learned from our many trips to Duke.  First, if a child doesn't outgrow a peanut allergy by the age of 5, he or she usually won't.  Second, IgE blood tests are not standardized.  The RAST test was primarily used from 1974, when it was invented, until 1989, when it was replaced by the ImmunoCap Specific IgE blood test.  This test may also be described as CAP RAST, CAP FEIA or Pharmacia CAP.  Wikipedia states that approximately 80% of the world's commercial clinical labs are using this newer version.  But, if you are comparing recent IgE blood test results to a previous test, you need to make sure that the labs are using the same test method.  Because the "Class" scale is assigned by the lab, unless you are comparing results using the same test method, one person's Class 3 may not be the same as someone elses.

We've got just one more visit before Abigail is on the "Maintenance Dose."  That means some relief for us on the frequency of trips.  After this next visit, we don't go again for six weeks.   Just in time for the holidays!

A Few Updates.....

I wanted to give a quick update on our trip to Duke last week.  It was our 12th visit and completely uneventful.  We drove a little over 2 hours there, got an increase in dosage (2 drops up from 1 of the highest concentrate), waited for the required 1 1/2 hours while they monitored Abigail for a reaction (she did have a little more severe tingling in her ears and throat) and then we drove the 2 plus hours home with a stop to visit my dad and sister and then again farther down the road for a little shopping and dinner.  We are down to just 2 more visits before we hit the maintenance dose.  Then we'll go every 8 weeks instead of every 2.  That's pretty exciting for us.

We had a safe and fun Halloween.  Hope everyone else did as well.  It's great to have neighbors who understand Abigail's allergy.  Many of them have safe candy set aside just for her.  As seen in the picture, this year her pile of safe candy was much bigger than the unsafe candy.  We packaged up the smaller pile along with her excess safe candy and added it to a collection going to the Charlotte USO who will send it with deploying troops to Afghanistan.  Thinking positively, I'm hoping in a year or two, we'll no longer need to sort candy.  I'm hoping Abigail will be able to eat whatever she receives.  Selfishly, it means the rest of us can also eat those forbidden candy bars.  I snagged a few Kit Kat's after she went to bed, but packed up the Reese's Cups and other peanut base candy bars.  The risk outweighs any enjoyment I might have by eating one.

Speaking of food that we can't eat, it seems that so much of the healthy, organic food I would like to purchase for our family is manufactured in plants that also process tree nuts/peanuts.  I was very disappointed during my last trip across town to Trader Joe's.  It's one of our favorite stores, and for the last year, a place where I did a great deal of our grocery shopping.  For a while now, our family has been eating foods without high fructose corn syrup, partially hydrogenated soybean oils, trans fat, artificial sweeteners, and of course, all nuts.  We drink organic milk and purchase organic meats.  I'm also trying to remove foods from our grocery list that contain artificial dyes. Trader Joe's had a lot of products at a really good price that met all of our restrictions.  I say "had" because the last time I went, a good many of the products that I buy were labeled "manufactured in a plant that processes tree nuts/peanuts."  While I can commend Trader Joe's for their great labeling practices, I was disappointed that there were yet more unsafe, healthy products that I could not purchase.  I asked the manager about all of the new labels, and he told me that they had recently changed distribution centers.  The new one was closer and while stocking the same Trader Joe branded products, they used different manufacturers to produce those products.  Unfortunately for us, those manufacturers also produced more products with tree nuts/peanuts in the same facility.  An important lesson here is that you should always read the label even if it's a product that you've purchased for years.  But, back to thinking positively, after the Duke clinical trial we might be able to eliminate "may contain" or "processed in a plant with tree nuts/peanuts" from the long list of food ingredients that our family chooses not to consume.  A very long list of organic products would then be on my "safe to purchase" list.

In the coming posts, I want to finish discussing IgE numbers and also discuss a great book I'm reading.  It's called "The Unhealthy Truth" and is written by Robyn O'Brien.  She discusses how our food is making us sick from food allergies to ADHD to cancer.  She brings up a whole new topic for me which is resulting in yet another food that I want to eliminate from our diet, food that has been genetically modified.  I was repulsed to read about the effects of rBGH on our dairy products and disheartened to read about the lack of regulation on genetically engineered crops of soy and corn, to name just a few.  I've added a few links over in the margin if you want to start doing your own research.  I'd add a word of caution though, it'll change the way you think about your food.

Nature's Path Foods

We're a fan of the Nature's Path Toaster Pastries, i.e. an organic Pop Tart.  Recently I contacted the company regarding their labeling policy and was pleased by not only their response, but also the Canadian government's stance on product labeling (I've put that section in bold).  Here's their e-mail:

Thank you for your query regarding the use of nuts in Nature’s Path products. We endeavor to always provide a good quality product.  Nature’s Path is committed to producing quality organic foods, using the best ingredients available, while adhering to strict quality control procedures.

Nature's Path Organic Toaster Pastries are made in a nut free facility.

Government regulators have advised us that because we utilize peanuts, nuts, soy or dairy in some of our facilities we are strongly recommended to put the disclaimer "may contain traces of peanuts, tree nuts, dairy or soy" on Nature’s Path products made in those factories. Government regulator opinion is that if there is a remote chance of cross contamination that the consumer should be advised of this possibility.

At Nature's Path we have an extensive planning and cleaning schedule which includes protein testing, for all our production facilities in order to prevent any cross contamination of our products with non-declared ingredients. All of our products that do not contain peanuts, nuts or soy  or dairy – as listed on the ingredient label are theoretically dairy, soy, peanuts & nut-free. However because of the remote chance of contamination from machinery or peanuts, nuts & soy or dairy in the plant we can not imply that there is no possibility of minute amounts of these allergens in our products.

No matter how small the chance, we feel it is our obligation to inform customers of this possibility. Our main concern is the health risk to any of our customers who may have a life-threatening allergy. We feel that consumers must make the final choice in consultation with their healthcare provider about eating Nature’s Path products.

Nature’s Path does manufacture some of its products in a dedicated nut free facility. Here is the list of Nature’s path products made in a peanut & tree nut free factory

Nature’s Path Frozen Waffles – all flavors- Share equipment with dairy, egg.
http://www.naturespath.com/products/waffles?tid=9&brand=All&nutri=All
Nature’s Path Puffed Bagged cereals – Puffed Rice, Puffed Corn, Puffed Millet, Puffed Kamut- Share equipment with wheat. No egg or dairy in facility.
http://www.naturespath.com/products/cold%20cereals?tid=5&brand=All&nutri=All
Envirokidz Animal Cookies –vanilla –Share equipment with egg. Contain soy. Casein/ dairy free.
http://www.naturespath.com/products/cookies?tid=94&brand=All&nutri=All
Nature’s Path Toaster Pastries- Frosted Toaster Pastries contains dairy. Unfrosted Toaster Pastries share equipment with dairy. No egg in facility.
http://www.naturespath.com/products/toaster%20pastries?tid=All&brand=All&nutri=All
Nature’s Path FlaxPlus Flax Seed and Flax Seed Meal
http://www.naturespath.com/products/vegetarian/flaxplus-flaxseed-meal
Nature’s Path Buttermilk Pancake Mix
Nature’s Path Flax Plus Pancake Mix
http://www.naturespath.com/products/baking%20mixes%20and%20ingredients?tid=All&brand=All&nutri=All

Please also check our website www.naturespath.com for more info on all of these including ingredient lists and store locations. (Updated & valid as of August 2009)

NB: people with life threatening peanut & nut allergies, it is still advisable to check back periodically with food companies over time because recipes can change.

Your email tells us that you are passionate about your health and wellness. If you would like to get more involved and share your opinion with us, please accept our invitation to join our research panel, The Cereal Bowl, at https://www.naturescerealbowl.com/R.aspx?a=23

Kind Regards,
Consumer Service

Wow, to have a government make such a suggestion as to protect the well-being of the consumers as opposed to catering to the large corporation.   How much easier it would be for parents with allergic children if we could look at the food packaging and have it tell us the whole story.  I've not purchased any of the other Nature's Path brands, but I've added them to my shopping list.  I also joined their research panel.  I'm not sure what that will entail, but the more I research the food we eat, the more I'm leaning toward going all organic.  I will say, there is one positive to Abigail's allergy.  Her allergy forced me to take a close look at the food our family is eating, and I'm appalled.

Like my other posts regarding food manufacturers, it's been my choice to endorse the company.  I've not been compensated for my review.

Note:  Wal-Mart has the best price for the Nature's Path Toaster Pastries.  They come in 6 or so varieties and are less than $3.00 a box.