Merry Christmas!

It's Christmas Eve.  The kids are in bed, presents are wrapped and under the tree, fruit salad and a breakfast casserole are ready in the refrigerator, and my husband and I are enjoying our first chance in days to sit down, watch a Christmas movie on TV and drink a glass of wine. 

I did want to take just a minute to wish everyone a very Merry Christmas!  I hope you've enjoyed the weeks leading up to tomorrow as much as I have...the parties, the picking out a Christmas tree, the shopping, the decorating, the special church services and the baking. 

I'll be posting again after the first of the year with the details of my first ever give-away so check back.  Also, the results of the food challenges for the first few clinical trial participants should be in so I'll update you on that as well.

Hope everyone has a fabulous Christmas and New Years!

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.

Keeping Halloween Safe

The excitement is mounting at our house.  Halloween is just a few nights away.  Abigail is going to be a unicorn this year.  Not just any unicorn, but her Webkinz unicorn, Melena, complete with iridescent horn, wings and tail.

So, what's the best part of Halloween?  For the kids, it's coming home and dumping their overflowing trick-or-treat bags out on the middle of the floor to get a good look at all of the candy.  Even though it's late, Abigail always gets to pick a piece and eat it.  But, do you know what we have to do first?  We have to sort the candy to look for pieces that contain peanuts.

Abigail dumps out her bag, and then she and I go through it piece by piece checking to see what's safe.  All the chocolate (ahh..the good stuff) and any of the candy that we're not sure about goes to one side. All of the safe, mostly hard candy goes in her pile.  Can you guess which pile is larger?  It's not Abigail's.  She has always been a really good sport about this.  I'm so proud at how she does this so matter of factly.  It's all she knows.  She's never had a Kit Kat, Twix, Snickers, Reese's Cup or bag of M & M's.  For that matter, I haven't had any of those for a while either.  At least since last Halloween when I ate one of her "unsafe" Twix bars after she went to bed.

So, what is safe?  I've compiled a list of peanut safe candies.  I'm sure there are others, but it's a good start.  As always, it's extremely important to check the package.  A candy that may be safe in my region of the country, might be manufactured in an unsafe plant in your region.  The manufacturer may have moved production to a plant with a chance of cross-contamination and is now labeling it differently.  Also, I've found that what might be safe as a bagged product might not be safe packaged individually for trick-or-treating.  Send me a comment, if you've found another brand that's safe, and I'll add it to the list.

Peanut Allergy Safe Halloween Candy
Tootsie Rolls and Pops
Charm’s Suckers, Blow-Pops, Dum-Dums
Skittles, Starbursts, Smarties, Dots, Sweet Tarts
Wonka's Nerds Laffy Taffy, Runts
Junior Mints, Andes Mints, Peppermint Patties, Rolos
Lifesaver Gummies
Hershey’s (plain chocolate bars, Kisses - not King Size or Seasonal Bags, Kissables)
Altoid Mints
Haribo Gummi Candies, Mike and Ikes
Supper Bubble Gum
Jolly Rancher (hard candy, lollipops and gummi candy)
Twizzlers

Other safe treats include the individual trick-or-treat sized Teddy Grahams, Goldfish and Rice Krispy Treats. 

Halloween can be really fun, but also really tough for many many kids.  My family just has to look out for peanuts and nuts.  What about children that are also allergic to milk, corn or soy?   Their candy pile is even smaller.  I've started giving out less candy and more non-food treats like pencils, stickers, tattoos and Halloween rings.  There are lots of other options to keep Halloween safe and fun for everyone.

Another Trip...Again

Wednesday of this week we were off to Duke again for our bi-weekly visit.  I believe it's visit number 11.  It was very much a routine visit except that Abigail and I got one really good piece of news.  We are just 3 more visits away from being on the maintenance dose.  Once we hit the maintenance stage of the study, our visits are no longer bi-weekly, but will be monthly and then every 8 weeks.  That's pretty exciting for a family that drives a 300 mile day trip every other week.

By the first of December, Abigail will be taking 8 drops of the highest extract concentrate given in this study.  Here's the study protocol for the maintenance stage:

Maintenance
During the maintenance phase, your child will receive 2000 micrograms of the study extract (crude peanut extract or placebo) daily for 24 weeks at home. Your child will continue to avoid peanuts and tree nuts in his/her diet for the duration of the study.  Your child will return to the Duke Clinical Research Unit every 1-4 months for a follow up history and physical exam for the duration of the study in addition to the scheduled food challenges.

After 24 weeks we'll return for the food challenge where Abigail will be challenged up to 5 grams of peanuts (approximately 8 peanuts).  That sounds like an impossibility to me right now, and frankly, pretty scary. We'll cross that bridge when we get there.  For now, we're celebrating that soon we'll not have to go so frequently!

Great News Segment about Allergies

When we were at the beach earlier this month, I was channel surfing and just happened upon a really good news program on what it's like to have a deadly allergy (food, bees, asthma).  It was from a child's point of view which makes sense because it was a Nick News segment airing on Nick Jr.  Abigail was already in bed, so I couldn't run and grab her so that she could see it.  I've been checking the Nickelodeon website periodically to see if they were going to post the entire segment, and fortunately, they did. 

Here's the link:  "I'm Allergic to My World".  We're going to sit down as a family and watch it this weekend.  I'm interested to see Abigail's reaction.  To see if it means anything to hear her story being expressed, not by her mom or a doctor, but by another child.

Thanks Nickelodeon for making a such a great news segment, for educating our friends, our neighbors, our care-givers. And, for hopefully making a difference in the lives of our allergic children!

Four Months & Two Weeks

We had our 10th visit to Duke this week.  We've been part of the Peanut Sublinigual Clinical Trial now for 4 months and 2 weeks.  I'd like to say we were halfway done, but I can't.  We've still got over 7 months to go before we do our first food challenge.

While we were at Duke this week, a mom and son came in for their last visit before their food challenge in December.  As we get closer and closer to Abigail's challenge, there will be more weeks between visits and fewer dosage increases.  This family was up to their highest dosage and were now just going every 6 weeks.  They are going to be either the first or second participant in our study to do the food challenge.  I was all ears as Dr. Kim was describing what was going to happen on the day of the challenge.

If the kids can tolerate it, they will be given the equivalent of 6 peanuts.  The results of the first challenges that occur in December and January can really impact the study.  If the kids can tolerate the peanut flour than that's fabulous news for us.  Talk about motivation!  If there is a high failure rate, then Dr. Burks and Dr. Kim will make modifications to the study.  Not sure what that means.  Larger dosages, more frequent increases?  Worst case scenario is that we have to start over on the peanut flour study.  The doctors really don't expect that to happen though.  There has actually been an adult on a similar sublingual study who did pass the food challenge.

I asked about Abigail's blood test results from our last visit.  I wanted to find out if her IgE number had changed.  Unfortunately, the results will be locked up until the food challenge.  Even Dr. Kim will be kept in the dark.  Abigail did have another skin prick test at this visit (she did fabulous).  Dr. Kim explained how her results could actually be worse than the initial baseline.  He did 8 pricks, 5 were peanut of various strengths, 1 was the saline prick and the last two were histamine pricks (Dr. Kim thought Abigail moved so he repeated the prick).  The histamine prick serves as the control.  If there is no reaction, then the test is faulty which is what happened at our last visit.  So, we watched and waited for 15 minutes.  The histamine pricks (the two on the bottom right side of her back in the picture) immediately formed welts and large red areas around the welts.  The first 2 pricks, the higher strength peanut pricks also formed welts and red areas.  The 3rd highest strength prick formed a pimple like place and was barely worth measuring.  The 4th and 5th strength prick didn't do anything.  That's a huge change from our first test where every prick reacted.

Do we get excited??  Is she already responding to the drops?  Afterall, it's only been 4 months and 2 weeks.  I asked if it was possible for her to simply be out-growing the allergy.  According to Dr. Kim, for peanut allergies, if a child doesn't out-grow it by the age of 5, they usually don't. Okay, so I'm just a little excited.  If we hadn't had a faulty test at our last visit, I'd be a lot more excited.  I'm still hesitant to start celebrating.  However, it's hard to complain or get worked up over having to drive almost 3 hours to Duke every other week.  Instead, I feel even more blessed at having the opportunity to do this for Abigail.

What's an IgE? An Introduction....

I've been wanting to post about IgE numbers for a while, but it involves science and medicine, neither particularly strong subjects for me.  I'm on the opposite end of the spectrum with interests centering around art and design and creative thinking.  So, why even tackle the subject?  Unfortunately, it just keeps coming up.

In conversations, parents of allergic children almost always get around to telling each other what their child's IgE number and/or Class is.  It's pretty much the only definitive description we can say about an otherwise very uncertain physical condition.  My daughter is allergic to peanuts.  Her IgE number is 14.10 kU/L, and she is a Class 3.  The number is up from the last time we had her tested when she was 4.  It does not mean that she is becoming "more allergic".  Her IgE number only tells the likelihood of her having a reaction.  At a 14, I know she has a 95% chance of having a reaction if she ingests any peanut protein.  What I don't know is when or if she'll have a reaction or to what degree of severity.  I don't know if the reaction will only need an antihistamine or require the dreaded EpiPen.  I don't even know how she got her allergy or if she'll have it her entire life.  That IgE number is the only known in a very scary world of unknowns.  We parents hold onto that number.  But what is it really?

There are 3 ways to determine if someone has an allergy.  The most definitive, most expensive and most risky is a food challenge.  The patient starts with a tiny amount of food and continues to ingest until the first sign of a reaction.  If there is a reaction, then the person is allergic.  If not, they're not allergic.  Usually the amount of food is so small that a patient might just break out in hives or maybe vomit, but there is the risk of  anaphylaxis.  At Duke, whenever a food challenge is administered (at least in the clinical trials) an IV is inserted as a precaution.  Abigail is not scheduled for a food challenge until spring of 2010.

Another allergy test method is a skin prick test.  In this test, the skin is pricked and the allergen in question is applied.  If there is an allergy, the prick area swells and the skin around it gets red and itchy (almost like a mosquito bite). The test can be used for both environmental and food allergens.  While this test is uncomfortable and somewhat subjective, it is less expensive and more reliable than the next method which is the blood test.  About.com does a good job describing and comparing both of these tests in layman's terms.  According to the site, blood tests are becoming more useful in determining food allergies because they measure the specific amount of allergic antibody to a food.  The downside of blood tests, however, is they tend to give more false positives and negatives, and may indicate an elevated antibody, i.e., an allergy, which may or may not necessarily equate to an allergic reaction.  It's from the blood test that the IgE numbers and Classes are assigned. 

Blood Test (RAST, CAP-FEIA, ImmunoCAP)

The RAST test or radioallergosorbent test detects the amount of IgE that reacts specifically with a suspected or known allergen (Wikipedia).  It's an older test and many labs are using a non-radio active test like the CAP-FEIA or ImmunoCAP.  Duke University Medical Center uses the CAP-FEIA.  It's important that you know which test your doctor is using, but I'll get to that later.

So what is an IgE?  I'm using a definition from kidshealth.org for Immunoglobulin E (IgE).  It's the simplest definition I can find online.  "IgE is a type of protein in the body called an antibody. As part of the immune system, it plays a role in allergic reactions. When a person is allergic to a particular substance, such as a food or dust, the immune system mistakenly believes that this usually harmless substance is actually harmful to the body. In an attempt to protect the body, IgE is produced by the immune system to fight that particular substance. This starts a chain of events leading to allergy symptoms."  For example, airway constriction in asthma, local inflammation in eczema, increased mucus secretion in allergic rhinitis and potentially fatal drop in blood pressure as in anaphylaxis (again from Wikipedia).   However, perhaps our nurse last week at Duke explained it best.  As she described it to Abigail....the peanut soldiers think they need to fight peanuts but we're training them not to.

In a discussion with Dr. Kim at our last visit to Duke, I learned how the IgE number is determined.  Peanut protein is adhered to the inside of a test tube.  The patient's blood is then poured into the tube, left to sit for a controlled amount of time and then shaken.  The peanut antibodies in the blood will stick to the peanut protein.  In other words, the antibodies in the blood "attack" the protein in the tube much like it does in the patient's body.  The extra blood is then washed off and the blood that is attached to the protein is measured.  That amount is the IgE number.  The Class is something assigned by the particular lab running the sample.

I've found a RAST scale that I want to post.  I also want to discuss a warning about how the big laboratories use different standards when reading the results.  There's also more on the topic about what the IgE numbers actually mean, i.e., chance of out-growing the allergy and chance of having a reaction.  But, I can just picture eyes glazing over with the amount of information thus far.  So, until next time....

Today's Visit to Duke

This is going to be short because frankly, I'm exhausted.  It was a big day for us, but I knew you guys would want to know how it went.

I made a mistake in my timing of telling Abigail what today's visit would entail.  I couldn't tell her too early or she would make herself sick with worry.  She fell asleep in the car right before we got there so I didn't tell her until we were walking into the medical building.  When I told her that it might be the appointment that they do the skin test, I "forgot" to mention that they would draw blood at the same time.  I couldn't exactly carry her through the building to the clinic if she decided she wasn't going to go, right?  Besides, we were already late (I'll get to that in a minute).  She handled it well.  She commented that hopefully it wouldn't be today's visit, but then changed her mind because she had brought two of her Build-A-Bears and thought that was a good thing. 

All went smoothly until she found out about needing to draw blood.  I had a time even getting her to agree to put the numbing medicine on her arms.  She obviously hadn't had enough time to process getting stuck.  After a few tears and much discussion, we got the numbing cream on and taped up and then moved on to the skin prick test.  After more hesitation, i.e., lack of cooperation, Dr. Kim was able to do the test.  It really is painless.  He marked her back with a pen in about 8 different places then did a tiny scratch at each place with a different dosage of peanut allergen, one salt water scratch and a histamine scratch.  I believe he said that the salt water scratch was for those patients that have very sensitive skin and/or prone to excema and acts as some sort of measurement standard.  The histamine also serves as a measurement guide.  Dr. Kim explained that her reaction today should actually be worse than her reaction from the baseline skin prick test they did when we started the study.  By dosing Abigail with a daily peanut protein, her body was, for lack of better words, "agitated."  Her body would initially "over-react" to the peanut protein, but theoretically, as she took more and more of the peanut protein, her body should get accustomed to it and stop reacting, or at the very least, react less than the baseline.

While painless, a skin prick test causes major itching and discomfort.  So, with a little hand fan to help with the itching, I was poised and ready.  Nothing happened. Well, almost nothing.  All of the marks got a pimple looking place, and the third scratch mark (not even the strongest dosage scratch) got a little red around it, but compared to the first test back in May, nothing!  As to not excite anyone by thinking that we've already seen a remarkable development after just 4 months, we have to assume that it was a faulty test.  It will be repeated at our next visit.

So far, the trip has not gone very well, and it's now time for the blood draw.  Thankfully, Abigail has had some time to come to the realization that she could be brave or we could call in 4 nurses, but that either way, she was leaving there minus some blood.  First stick wasn't successful, and our nurse had to try her other arm.  Second stick hit the mark, and all was well.  At this point, my very "brave", tearless little girl is helping change out the tubes.  There were 6 in all, and she put on 4 of them.  She swears that it was a piece of cake (minus the first stick that hurt) and that next time will be no big deal.  I didn't bother to remind her that she pretty much said the same thing 4 months earlier.  To give her credit though, at our first visit to Duke her IV needle had to be inserted twice (first time the needle was too large).  She had every right to be unhappy with needing to draw blood today with that experience fairly fresh in her memory.  Our nurse loaded Abigail up with treats, and we were finally on our way home.  Abigail is showing off her two bandages in the picture.

Our 9th visit is over and done with.  Abigail is now taking 4 drops of her solution and will continue to do so every day until we go again, 2 weeks from today.  We've got another skin prick test to look forward to.

Thanks for keeping us in your thought and prayers today.  We made it through the day!  Getting ready for the trip was much easier today, and we got on the road with time to spare.  Not 2 miles from our house though, I dumped almost half a Wendy's tea in my lap, had to circle back, change clothes and clean up the car making us late yet again to our appointment.

So much for a short post

Now for Some Good News!

I thought I'd post some good news for a change.  The last couple of posts have been troublesome first with the news of ConAgra and their "proprietary" manufacturing information and second with the telling of how bogged down I was getting over our trips to Duke.

It's time to shout out praise for General Mills.  I hate to even mention ConAgra in the same sentence, but like ConAgra, I sent an e-mail to General Mills asking about their allergy labeling policy.  Again, trying to find out how they label for products manufactured in the same facility or using the same equipment as products containing peanuts.  Here is their response:

Thank you for contacting General Mills concerning ingredients in our products.  As manufacturers and consumers, we understand your concern about potential allergens in the foods you eat.  Our primary goal is to provide accurate information; and we believe this is best accomplished by referring to the specific ingredients listed on each product package.  This is the most current information for your needs.

If one of our products contains any of the top 8 allergens (peanuts, tree nuts, dairy products, eggs, soy, wheat, crustaceans, and fish) or if it contains sesame, sunflower or mollusks, that ingredient is always listed in the ingredient panel, and also in bold letters just below the list of ingredients.  If a product is exposed to any of these allergens in the manufacturing facility the allergen will be listed in bold in the ′Contains Statement′ just below the list of ingredients.  This list is your ingredient assurance for that package.  It is not intended for other packaging of the same product.  Ingredients may vary from one package to another due to product reformulation.  If you have allergy concerns, please read each package ingredient panel.

This means I'm now a huge fan of General Mills.  Not only do they include a few additional allergens over and above the top 8, but if a product is manufactured in a facility with an allergen, the allergen is listed in the "Contains" statement.

We're all familiar with their cereals, Cheerios, Trix, Lucky Charms, Chex, but also Cascadian Farms, Fiber One and Nature Valley.  Some of their other brands include Betty Crocker, Pillsbury, Bisquick, Fruit Roll-Ups, Progresso, Green Giant, Old El Paso and Haagen-Dazs.  Now, if we could get them to drop the high fructose corn syrup, artificial sweeteners and partially hydrogenated oils we could enjoy even more of their products.

Our next visit to Duke is this coming Wednesday.  Be thinking about us.  Abigail has to have blood drawn and another skin prick test performed.  And me, I have to be rock solid keeping her brave and distracted through each procedure.

Stressful Trip to Duke

We had another appointment at Duke last week.  I had to go back and look at my last post to see if this one was our 7th or 8th trip.  The appointments are all starting to run together.  This appointment was quite uneventful in that we saw no significant reaction to the increase in drops (2 drops of 1/10 solution, up from just 1 drop) and there was no opportunity to ask her doctor questions that I could later blog about.  Abigail even ordered the same food (which is the highlight of her visit) as the last several trips.  So, why was this particular trip so stressful?

Anyone that knows me, knows that I've got a major Type A personality.  The preparation (and we all know that Type A's have to prepare) for this visit just about did me in.  It was our first appointment with Abigail being in school.  It was also preschool orientation for my 2 year old son... his first day going to school, seeing his classroom and meeting his teacher.  And, that evening, a parent meeting at his school.  One of those meetings that if you're late and the last in line for the volunteer sign ups, you end up having to either host the class Christmas party or be room parent.  You moms know what I'm talking about.  So, there was a strict time schedule for the day, and I couldn't miss a beat.  I also had to have snacks and lunch packed for the car, the "Duke" bag packed with the remaining drops, daily log, etc. for the appointment, my son's diaper bag with extras for his stay with my mom, the note for Abigail's school, and so on.  To top it off, emotionally, it was a big day because my sweet baby boy was starting preschool.  Add it all up, and I was a stressed out, sick to my stomach mess. 

Here's how it played out.  I got Abigail out the door to school at 6:50, got my son and myself packed up and to church by 9:00, got him all settled in his new class, sat through a parent orientation, swung by the church library for movies for the car trip (it's a long one), picked him up and got to Abigail's school by 10:20, checked her out and got both kids settled with snacks by 10:30, made a quick drive-thru stop for caffeine, passed out brown bag lunches (didn't stop for that) and pulled into mom's driveway at 12:15, was back out minus my son and heading to Duke by 12:30, parked and late to our appointment at 1:15, checked out of Duke at 3:10 and back to mom's house by 3:50, through the McDonald's drive-thru (yuck!) at 4:30, finally pulling into my driveway around 6:30, kids in bed by 7:15, back at the church for the preschool meeting at 7:30, home with glass of wine in hand at 8:45 and lights out at 9:45.  Minus the evening meeting, this is what I've got to look forward to every other week for the next 5 months.

I knew it wasn't going to be easy.  But, wow, how physically draining.  My husband is going to work from home once a month and take over getting our son to and from preschool.  That'll mean that he can stay at preschool the entire morning, and I can eliminate the extra packing and drop off at mom's.  Meantime, I've got to focus on the big picture, on what our family hopes to gain, on Abigail's future.

In this picture, Abigail is sporting her backpack.  This visit wasn't much fun for her either.  This summer we played games to pass the time.  This fall, instead, she has to do her homework.  Our next visit is this coming Monday.  Please keep us in your thoughts and prayers.  For me, that I don't get bogged down with the preparation details, and for Abigail, because next visit is going to be a difficult one.  She doesn't know it yet, but they're going to do a blood draw, saliva collection and skin prick test.

Bad News from ConAgra Foods

I received a very disturbing e-mail today.  In a previous post, I wrote that I was in the process of contacting major food manufacturers regarding their product labeling.  By law, food manufacturers must include a "Contains" statement if their product has any of the top 8 food allergens in the ingredients.  They do not have to include a statement regarding whether their product is manufactured in a facility or on the same equipment with a product that contains these allergens.  Given the risk of cross-contamination, people with severe food allergies should not consume foods processed in either of these conditions.

One of the companies I contacted was ConAgra Foods.  It's a huge conglomerate of highly popular, highly consumed brands.  The list of their brands is too long to include them all, but here are a few:

• Chef Boyardee
• Healthy Choice
• Kid Cuisine
• Hunt's
• Van Camp's
  
• Orville Redenbacher's
• Marie Callender's
• Banquet

We really try hard to avoid all foods with high fructose corn syrup, trans fats, partially hydrogenated oils, artificial sweeteners or high sodium content.  This eliminates a lot of their food from our shopping list.  However, we do still purchase quite a few of the ConAgra products.

I received a response from ConAgra today regarding my inquiry into their labeling policy.  Here it is:

Thank you for your request for more information about the ingredients in our products.

We comply with Federal regulations for allergen labeling.  These regulations require all major food allergens to be listed in plain language on the ingredient list, and/or be noted in plain language in a 'Contains' statement appearing just after the ingredient list. For consistency, ConAgra Foods always uses the 'Contains' statement. The allergens we list will include any of the eight major food allergens that are used in ConAgra Foods products. The major food allergens as defined by regulation are Crustacean Shellfish, Egg, Fish, Milk, Peanut, Soy, Tree Nuts, and Wheat.

Allergenic ingredients will be listed in the ingredient statement and will be noted in the Contains statement if they are included in flavorings or spice mixes. Please keep in mind that product formulas do change occasionally, so it is important to read the ingredient statement each time you purchase the product.

ConAgra Foods would like to help you with this request to the best of our ability. However, because the information you have requested is considered to be proprietary and a trade secret of ConAgra Foods, we are unable to supply this information.

If you have any allergen concerns outside of the Top 8 Food Allergens, we recommend you do not consume the product and consult your physician.

We appreciate your patronage and value our consumers.  We hope you will continue to enjoy our line of quality food.

Proprietary information, trade secret....really???  You can't tell your allergic consumers if the food they are eating is safe??  I understand that ConAgra is a really big company and that their food is probably manufactured in facilities around the world.  I also understand that it would take tremendous effort to document every food manufacturered on every line in every one of their facilities and then coordinate their package labeling to reflect their processes (although other manufacturers do).  Why not just say that?  How is telling a consumer with a peanut allergy that the food they are eating was made with equipment also used to make a product containing peanuts a violation of a trade secret?  I feel one of my infamous "soap boxes" coming!  Is it possible to boycott this company and not purchase any of their brands?  I'm about to find out!  Poor Abigail, it was a really big treat for her to be able to have a "fast meal", i.e., Kid Cuisine.

Follow up to Post:   I had someone recommend Ian's as an alternative to Kid Cuisine.  I went on their website, and they do have a very healthy, nut free kids meal.  It doesn't come cheap though.

Back to School

Abigail started school this week.  We are looking forward to a fun and successful year in 1st Grade!

Every fall, moms and/or dads and their school age children hit the stores in droves shopping for a new backpack, lunch box, paper, pencils, erasers, markers, tissues and the list goes on and on.  It's a very exciting time as we cross each item off our Required Supply List provided by the school.  For many parents, after verifying the bus schedule and going to open house to meet the teacher, school preparation is done.  For parents with allergic children, the preparation has just started.

I've spent weeks prior to school starting creating the tools necessary to keep my daughter safe in school.  There's the Food Allergy Action Plan, the letter to her classmates' parents explaining what they can do to help, the Medical Authorization Forms that have to be signed by her Pediatrician, new EpiPens and Benadryl for the classroom, letters for the bus drivers, a safe snack list, peanut safe treats for her to eat in lieu of store-bought cupcakes, etc.  I've also met with the Principal, had a one-on-one meeting with her new teacher and a phone discussion with the school nurse.

Our school has been great!  I know that's not always the case, and many parents have to really go to battle for their allergic child.  My meeting with the Principal was very productive.  My main purpose was to discuss the Clinical Trial at Duke.  Abigail has to miss school to participate.  Right now, we are going every other week.  Based on the appointment time restrictions and the lengthy drive, I'll be picking her up early from school for each visit.  She'll miss a full day of school for each Food Challenge.  I am excited though because during our meeting, I mentioned that I had a letter that I would like to send home with each classmate explaining the seriousness of Abigail's allergy and some precautions that everyone could take to make the classroom a safe learning environment.  The Principal asked that I forward it to him.  He ended up e-mailing it to all the teachers in the school to use if they had a student with a peanut allergy.  I made a difference!!  My husband now jokingly refers to me as his activist wife.  

My meeting with Abigail's new teacher was also very reassuring.  Surprisingly, she has never had a peanut allergy student.  We had a clean slate to work with.  We went over where Abigail would sit in the cafeteria, the fact that Abigail couldn't have table clean-up duty, what information any substitute teacher would receive, everywhere Abigail's medicine had to go, the clean-up procedure for when they ate snacks in the classroom, requests for class parties and other celebrations, etc.  Isn't it amazing the details that we have to address??  Her teacher was fabulous through it all!  At Open House, she sent the letter and safe snack list home with each of the parents and even asked that they consider sending peanut free snacks to school each day something that I didn't ask for.  She is also requiring that each student wash their hands upon arriving to school, after coming in from the playground, after eating snack and after lunch!  I'm so pleased about that.  Not only because it creates a safer environment for Abigail, but also because it'll make a healthier class during cold and flu season!

Here are a few of the documents that I provided to the school.  In each case, I was unable to find one on the internet that totally fit my needs, so I either drafted one, or modified one I found online. 
Peanut Allergy Letter for Classmates
Peanut Safe Snack List
Peanut Allergy Letter for Bus Driver

The Peanut Allergy Action Plan does not upload properly to Google Docs.  You will need to contact me for that file.  My e-mail address is listed under "Contact Me".  I do have to thank a member of my PAK group for the Action Plan.  It was a great idea.  I've condensed it so that it's much smaller, made lots of copies and laminated them.  The teacher has 3 (one to post at her desk, one in the sub folder and one for the first aid backpack).  I gave Abigail's morning and afternoon bus drivers a copy and put one in with her EpiPen that goes everywhere with us.

Enough for this post.  I'm working on a Part 2 to the Back to School Post.  We've come a long way emotionally since Abigail was 2 and starting preschool for the first time.  For all you moms out there that are sending your little one to school for the very first time and are freaking out...it does get easier.

Good news this week!

We went to Duke again this week. It was our 7th visit. Abigail has experienced some tingling in her ears and/or throat after most of her drops over the last 2 weeks, even Tuesday before we went to Duke on Wednesday. In the past, the tingling would stop just a few days after a dosage increase. So, this last dosage increase was different, and I was anxious to see what would happen at this visit to Duke after another increase. Surely a hive this time?

No hive. However, instead of the tingling lasting only a minute at most, it lasted almost 10 minutes. It started in her throat, then one ear and then the other. That was really positive. Yesterday, Thursday, we were back to ear tingling for half a minute or so.

Today, though, was a turning point in answering the question of whether or not we are on the placebo or the real stuff. I gave Abigail her drop, and she went out to the garage to jump rope until her 2 minutes were over (remember, she has to hold the drop under her tongue). She came running in before time was up for two reasons. The first, and most important in my book was that her tongue was burning! To the point she was really upset and smacking at her face to make the burning stop. That itself was disturbing, but she was obviously upset and her tongue was really burning. So, after calming her down, I gave her some ice chips which was recommended at Wednesday's visit to Duke to help with the tingling. Actually, they suggested giving her a Popsicle. A Popsicle... really.... for some tingling? That's taking the "making the kids happy" to another level! We then concluded that while jumping rope, some of the drop must have hit the top of her tongue and caused the burning. The ice chips worked, and the burning stopped. Her ears started tingling and again lasted just a minute.

The second reason that Abigail came running into the house and most important to her, she jumped rope 11 times in a row!

Time to offer up thanks!

To Chick-fil-A or Not To Chick-fil-A?

When Abigail was first diagnosed with a peanut allergy it was recommended by the Allergist that we also eliminate all nuts from her diet and to not eat anything cooked in peanut oil. Our pediatrician also confirmed that it was best to not take the risk of eating foods cooked in peanut oil in case a small portion of peanut would make it through the refining process and end up in the oil. That eliminated one of our favorite fast food restaurants, Chick-fil-A. For my readers not familiar with Chick-fil-A, you guys are really missing out. Next trip south, you should make a point of finding a restaurant and stopping for a meal. For several years it was a place where I would occasionally treat myself to a chicken biscuit or sandwich only when I was by myself. We hated to not have it as an option for Abigail because as far as fast food was concerned, it's relatively healthy, and back in 2004 when she was diagnosed, it was one of the few fast food chains that served trans fat free food.

We avoided all restaurants that used peanut oil to cook with for years until I started asking around. More and more moms with children that had peanut allergies were letting their kids eat at Chick-fil-A and stating that their doctors had okay'd it. I even researched Chick-fil-A's website and they only use a heat processed, fully refined peanut oil. According to the International Food Information Council Foundation, commercial oils are highly refined which removes the protein from the product. Further, it states that "research has shown that individuals with severe peanut allergy have not had reactions to heat processed oils. However, people with a food allergy should avoid “gourmet” or cold-pressed oils because they may contain allergenic proteins, which provide the flavor to the oil. For the same reason, allergic individuals should avoid oils that have been used to fry potentially allergenic foods."

When we started the clinical trial, one of my questions was whether we were going to have to stop eating at Chick-fil-A again because of the peanut oil. Dr. Bird confirmed that hot pressed peanut oils were safe and that we could continue eating at our favorite fast-food restaurant.

Recently, a post was made on an allergic kids group of which I'm a member warning of a friend that had a reaction requiring a visit to the ER after eating at Chick-fil-A. The follow up posts came fast with all types of dire warnings like playing Russian Roulette every time you eat there (this coming from a patient's Allergist).

We just happened to have an appointment at Duke that next day so I again asked the question to our new doctor, Doctor Kim. He also agreed that it was 100% safe (I got the impression it was the entire department's stance). He said from a scientific perspective it was not possible to react to highly refined peanut oil. His reason (if I can reiterate this correctly) is that peanut protein is a lot of amino acids linked together. A person with a peanut allergy reacts to this group of amino acid. With high heat and pressure, those amino acids are broken into so many pieces that the body can't recognize them and therefore doesn't react. Was it possible to have a small particle escape the refining process? He said not from a very large oil producer with huge vats and a tremendous heat source. He did recommend staying away from gourmet restaurants and higher end grocery stores that use peanut oil saying that it may not be as refined or could even be cold pressed oil.

As far as the person that did have a reaction he said you really had to look at other causes, i.e. wheat or milk which would be much more likely or even something consumed several hours prior. I also asked that very telling question...if your daughter had a peanut allergy would you eat there...he responded absolutely.

As I'm doing more and more research, I'm finding it very confusing and at times very difficult to know what to believe. There is so much contradicting information all from very credible sources. Our Allergist and Pediatrician recommended against it, Duke says it's fine. And, it is my daughter's life at stake. Bottom line, I believe you totally have to go with your gut, what you are comfortable with. You have to be your family's own advocate. If you are at all hesitant, don't eat at Chick-fil-A. If you have a great trust in the doctor that's saying it's not worth the risk, don't take it. For us, Chick-fil-A is still a family favorite!

Sixth Trip to Duke

We went to Duke again this last week. It was our 6th trip. We got there earlier than normal so Abigail got to take her customary trip on the escalator...not once, but twice. I'm always amazed at how the little things can thrill my kids. Riding the escalator up and then down again happens to be one of those little thrills. I'm not sure Abigail fully appreciates or even understands the full extent of our participation in this trial. All she's focused on is that it's a really long drive, she gets poked and prodded (and occasionally pricked) and she has to daily be inconvenienced to take her drops. Little treats like warm bagels with cream cheese from the cafeteria and escalator rides make it tolerable. That, and the surprise books and small games that I pack in our "Duke trip" bag which, by the way, has a large Wake Forest Demon Deacon embroidered on the side. Dad, that one's for you!

At this visit, her dosage increased from 4 drops to 8 drops. Again, she had tingling in her ears and throat. Dr. Kim said that it was a frequently reported sensation for other participants. It sounds silly now, but I asked if there was any possibility that it could be a result of holding up your tongue for 2 minutes or if he felt that it was definitely a result of the drops. Definitely the drops. Again, no sign of hives.

Three other girls came in while we were there. They had all started the trial about the same time as Abigail. I'm always proud of her when she initiates a conversation and tries to make a new friend. There's only been one time though when we've seen a little boy at two different visits. Mostly, it's all new faces every time we go. It would be nice if another treat was seeing a special friend at each visit. Dr. Kim's new schedule is going to mean that we can only schedule appointments on Mondays and Wednesdays so we might start to recognize a few other participants.

Kudos for Kashi

Kashi is one of our favorite brands. It's healthy and natural, two requirements at our house. I'm also extremely impressed with their proactive stance on allergen research and labeling.

When I recently found out that just because a food company puts on a "may contain" statement (which is required by law for the top 8 allergens) on their label it doesn't mean that they are also stepping up and labeling their products as to whether they're "made on shared equipment with peanuts" or "made in a facility that also processes peanuts". Which, by the way, is not required by law.

After just reading a horrifying story of a child having a reaction after ingesting a common pantry staple manufactured by a very large, reputable company, I decided it was time to start contacting manufacturers that do not include a "made" statement for items in our pantry. Here is the link to the account of a child reacting to cake batter. This is particularly unsettling because we've used this cake mix on many occasions at our house.

I start with the manufacturer's website. Instead of calling, I e-mail. That way I have a response from the manufacturer in writing. I was very impressed with Kashi's information on peanut allergies, but still contacted them just to clarify. Here's the information from their site:

Our production lines are thoroughly cleaned between allergen containing products and we follow good manufacturing practices. We have validated (through testing) our allergen cleaning processes in all of our facilities. We are very concerned about food allergies and want to ensure that our products are safe for food allergic consumers to eat. Scientific evidence has shown that consumers with peanut and tree nut allergies can have a severe reaction to amounts that are below the current detectable limits based on existing technology. For this reason, we have chosen to warn consumers allergic to peanuts and tree nuts of the potential for extremely low levels by using a may contain statement.

Additionally for all other top 8 allergens, if the product contains the allergen, it will be listed below the ingredient statement. If it is not listed below the ingredient statement, we are confident that the product is safe for consumption. Please trust the labeling and continue to check it for any changes.

I wanted to verify that I read that statement correctly and that Kashi's labels would include peanuts and/or tree nuts if that product was manufactured on shared equipment. Here is portion of their e-mailed response:

First of all you are correct, if there is nothing labeled under the "may contain" line it is safe to eat.

We understand and share the concerns expressed by consumers who are affected by food allergies. We have been one of the leaders in the food industry in devising manufacturing processes to reduce the risk of allergens from contaminating allergen-free products. We have worked extensively with allergy organizations and research groups so that we understand the seriousness and complexities of food allergies.

All of our product packages have labeled the top eight potentially allergenic ingredients (i.e. peanut, tree nut, cow's milk, egg, soybean, wheat, fish and shellfish) in a separate box directly below the ingredient list on the Nutrition Facts side panel. Because product formulations can change at any time, we encourage our consumers to check the ingredient statement on each package they purchase for the most up-to-date information on the ingredients contained in that product.

So, Kashi will continue to be a favorite!

P.S. I didn't write this blog as a request from Kashi. I wrote it because I feel that companies have a responsibility to their consumers, and I think Kashi is living up to that responsibility and should be commended.

Another trip to Duke

We went to Duke this week for our 5th visit. It was very much like our last couple of trips with the exception that we got to meet our new Doctor. Our last doctor finished his Fellowship in June and accepted a position in Texas where he will be conducting his own clinical trial.

We met Dr. Kim who is very personable and has great bedside manner. He'll be Abigail's doctor for the next 2 years so I was glad she liked him. I liked him because he readily answered all of my questions, and I took a whole page of notes.

I was really hoping to see a concrete sign of a reaction. On a previous visit Abigail had some itching in her ears when they increased her dosage. This time she had some tingling in her throat, but it only lasted a minute or so. You can't refute a hive or rash. When a 6 year old complains about her ears itching or her throat tingling you question if it's psychological. Each day at home between visits, Abigail gets the increased dosage. After this visit, she had some throat sensation the first day at home, but not today. If we end up in the placebo group, we get to start the trial over with the peanut slit, but it adds an entire year to the process. At an earlier visit it was mentioned that most visible reactions occur after the 4th or 5th dosage increase. I was really pleased to find at this visit that that's not always the case.

There was an issue with the peanut slit given to the first group of children. It was a problem on the lab's end, not Duke's. Late last year, these children had to restart the trial, and were all given the real deal. Some of those children getting the peanut slit have had only mild to no reactions. So, there is hope. Bottom line though is if we are on the placebo, we deal and start over. Our family is committed to this study. If it takes 42 months instead of 30, then that's what we'll do. It's too important to Abigail's future and the future of millions of other children to not see it through to the end.

As mentioned, I took a whole page of notes. I'll share most of that information in future posts, but I did want to address a question from a previous post. I've been asked what the drop dosage equivalent is in milligrams. I still don't know, and neither did Dr. Kim. Because it's a liquid dosed in drops under the tongue, it's difficult to compare it to an ingested peanut powder measured in milligrams. I do know that we'll work up to drops containing 2 mg of peanut extract in the next 8 months and will maintain that dosage until the end of the study. Abigail will be challenged to 5 mg of peanut flour at her 1st food challenge and up to 10 mg at her 2nd food challenge. It was my understanding that the theory is that your body doesn't have to be exposed to a large quantity of peanut to build up tolerance.

I've included a picture of Abigail in the trial room. It's where we go after we've checked in at the desk and been to the lab for vitals, height and weight. It's in this room that we meet with the doctor, take the increased dosage and sit out the hour and a half while we wait to check for reactions. In this picture, she's enjoying the highlight of the visit, the food. Let's see, today's spread includes bagel, pretzels, ice cream and juice.

EpiPen Practice

You may have already heard of or even done this, and I just might be behind the times, but when a parent at a recent PAK meeting made this suggestion, I couldn't believe that it isn't something recommended by doctors and educators everywhere. It was suggested that parents and allergic children carefully, and with full adult supervision, practice administering a shot of epinephrine using an expired EpiPen and an orange. I thought this was a fabulous idea and had 3 expired pens in the top of my pantry. They've been there for some time waiting to be taken to the pediatricians office for disposal. What a great use for them!

This last Sunday afternoon, Abigail, her daddy and I all got to practice. That poor orange was full of holes by the time we got finished. We recorded Abigail's experience to share with our readers. I should note that prior to recording, we sat down with Abigail and discussed in detail each of the steps and explained how careful she should be with the needle. We also made sure that she understood that epinephrine is not something to mess with and should only be injected when she could not breathe (like she would anyway...it's a needle right?). When she finished her practice shot, she made the comment that she liked doing it and that she wanted to do it again. I guess that's better than being freaked out by the whole experience and wanting nothing to do with her EpiPens. Of course, after seeing the needle, we all developed a slightly better appreciation of the seriousness of what she so casually carries around.

Right now, she carries 2 EpiPen Jr. Auto-Injectors, 3 antihistamine tablets, an instruction sheet and medical release form in a cute monogrammed bag. It goes with us every time we head out the door. That bag has been handed to more people than I can count: Sunday School teachers, coaches, camp directors, friends' moms on play dates, grandparents, etc. After 4 years, it's now just second nature. I keep another set of EpiPen Jrs. at home in the kitchen and during the school year, a set are kept in her classroom and go with her teacher to lunch, to Specials, to the playground and on field trips. There is also antihistamine medicine (liquid and chewable) in the pantry and upstairs in the medicine cabinet. And, until I know with 100% certainty that my 2 year old son is not also allergic, I keep one of those new, very convenient, single dosage Benadryl spoons in his diaper bag. Wish those had been available when Abigail was a toddler. Back then I had to carry a sticky bottle and a dosage cup.

At a recent visit to Duke, we got a new prescription for the adult EpiPens. At 47 pounds, Abigail is right on the edge for the weight requirements. It's still recommended that she carry two pens. Evidently, 35% of reactions require a second injection. It's even possible to have a secondary reaction an hour or so after the first. The Center for Anaphylactic Support provides some other good information as well as offers a free EpiPen expiration date reminder service and a $5.00 EpiPen rebate.

I ran into a mom the other day at church whose daughter recently finished the clinical trial at Duke using peanut flour. The daughter is now eating peanuts daily to maintain her tolerance. How exciting! Anyway, the mom didn't have EpiPens in her purse and she said it felt really weird. I just pray that I have that problem too!!

Early Signs?

Were there any early signs that Abigail would have an allergy to peanuts? I referenced Dr. Burks in my last blog. He's the Chief of the Division of Pediatric Allergy and Immunology at Duke and oversees all of the clinical trials as well as sees patients (I hear it takes about 6 months or more to get an appointment). We haven't met him on any of our trips to Duke yet. He's been in the news so much lately, that I feel like when I do meet him, I should ask for an autograph or something. Anyway, in a 2006 article, he stated that about 20 percent of babies with eczema or milk and egg allergies will develop an allergy to peanuts by age five.

As an infant Abigail had eczema, and although she was never diagnosed with a milk allergy, she was definitely "intolerant". Just look at this picture taken of her at one month. A lot of newborns have red cheeks and acne. She had both. The majority of that cleared up after the first week or so. Then her cheeks got rashy and inflamed. Our pediatrician (at the time) didn't appear overly concerned. I didn't like it because it looked raw and painful. A friend happened to mention that her son's cheeks also looked like Abigail's until they eliminated milk products from his diet. I was breast-feeding so that meant if I wanted to try that, I had to eliminate dairy from my diet. I did, and in a just a matter of days, her cheeks were clear and baby-soft. Just look at my sweet baby at two months. Assuming that was the culprit, we continued the milk elimination diet when Abigail started formula. We put her on a soy-based formula, and at a year old, switched her to soy milk. She didn't drink cow's milk until around 2 years of age when I started reading that soy was a natural estrogen booster, and we weened her off. At that point, she appeared to have out-grown her sensitivity to milk. She later tested negative to a milk allergy.

In researching for this post, I came across an article published by the Cincinnati Center for Eosinophilic Disorders entitled Interesting Causes for Peanut Allergy Identified. The article sites a study done in southwest England that followed almost 14,000 preschool children for a year. It would take too long to post all of their findings, but here's one of interest:

Notably, there was a strong and statistically significant association between consumption of soy milk or soy formula in the first two years of life and the development of peanut allergy. This consumption typically preceded development of peanut allergy. The association with soy protein exposure and peanut allergy could arise from cross sensitization through common episodes that may prime T cell responses. It goes on to say that, In contrast, milk allergy was not associated with peanut allergy.

Okay, so now I'm confused as so many other parents are. One source says there is a link between milk and peanut allergies and another source states that it's soy that is linked to peanut allergies. But just to further muddy the water....read this.

Sydney, June 19, 2008. Parents need not worry about giving their children soy milk or soy-based formula. It is not likely to trigger peanut allergy, according to a new study. “Our results show that their risk of becoming allergic to peanuts … is a myth,” said epidemiologist Jennifer Koplin of Murdoch Children’s Research Institute, who led the research. The article goes on to say that "the new study, however, suggested that the association between soy consumption and peanut allergy is coincidental. It occurs because parents whose children are already at higher risk of peanut allergy - due to a family or personal history of cow’s milk allergy - are more likely to give their children soy." For the record, neither Dave or myself is allergic to cow's milk.

So, maybe I didn't answer my question, but did I absolve myself of guilt? I'm not really sure that I did. But, I did it again anyway. Our second child (who is now 2) also showed a sensitivity to cow's milk. Not wanting to make the same mistake, we tried a Lactose free formula instead of a soy formula which seemed to work for him. However, when it was time to change him to milk, we compared a Lactose-free milk and Silk Soy milk with DHA Omega-3 and calcium and couldn't get over the difference in nutritional value in the Silk. So, yes, we did it again. Nathaniel drank the soy milk for a year before we changed him to the Lactose-free milk. He still is a little sensitive to just straight cow's milk. We've had him allergy tested also. At this point, he tested negative to both peanuts and dairy.

So, if not the soy milk, maybe my daughter's allergy is related to all of the peanut butter I ate when I was pregnant?? That's a topic for another blog.

One other note, we're actually waiting 3 weeks between visits to Duke this time because Abigail has music camp next week. Duke is pretty flexible when scheduling visits. I don't think they'd let us go longer than 21 days though. Until later.