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....