Wednesday, July 29, 2009

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.

Thursday, July 23, 2009

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.

Wednesday, July 15, 2009

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!!

video

Tuesday, July 7, 2009

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.

Friday, July 3, 2009

What is a Peanut Allergy?

I thought I'd take a few minutes to give my readers that are only just a little familiar with peanut allergies some more food for thought (peanut free food that is).

So, what is a peanut allergy? According to Wikipedia, a peanut allergy is a type of food allergy distinct from nut allergies. It is a hypersensitivity to dietary substances from peanuts causing an overreaction of the immune system which in a small percentage of people may lead to severe physical symptoms. It is usually treated with an exclusion diet and vigilant avoidance of foods that may be contaminated with whole peanuts or peanut particles and/or oils.

According to Wesley Burks, M.D., Chief of the Division of Pediatric Allergy and Immunology at Duke, despite their best efforts, many people with peanut allergy will accidentally ingest peanut products. Signs of an allergic reaction to peanuts in young children include skin, respiratory and gastrointestinal symptoms: hives, an itchy rash, wheezing, throat tightening, vomiting or diarrhea. Peanuts are the leading cause of food-induced anaphylaxis, a life-threatening reaction that constricts the airway and lungs, severely lowers blood pressure and causes swelling of the tongue and throat. Nearly 150 adults and children die from allergic reaction to peanuts each year in the US and the allergy causes an estimated 15,000 emergency room visits yearly. The only treatment once symptoms appear is taking an antihistamine, and then epinephrine, to relieve shortness of breath.

Nearly 1.8 million Americans are allergic to peanuts, and 400,000 of those are school-age children, according to the Food Allergy and Anaphylaxis Network. Only 21 percent of children outgrow it. Between 1997 and 2002, peanut allergy in children has doubled. The estimated number of Americans with food allergy has increased, and the scientific community doesn't know why.

More important, though, is what's on the horizon.
Currently there is no treatment to prevent or cure allergic reactions to peanuts. Strict avoidance of peanuts is the only way to avoid an allergic reaction. Sounds easy enough doesn't it? Peanut butter, peanut butter crackers, peanut M & M's...those are all obvious. However, almost all peanut exposure is accidental. Peanuts can also be found in prepared soups, chili, Thai & Chinese foods, ice cream, candy, chocolate, cookies, crackers and baked goods, to name just a few. The Food Allergen Labeling and Consumer Protection Act (FALCPA) requires food manufacturers to disclose in plain language whether products contain any of the top eight food allergens. It does not require manufacturers to disclose whether they also use these food allergens to manufacture another product in their facilities thereby risking contamination. So, what are children and adults with a peanut allergy advised to do? Carry epinephrine injectors to treat anaphylaxis and antihistamines to treat milder reactions.
While several companies have developed promising drugs to counteract peanut allergies, trials have been mired in legal battles.

A medically supervised daily dose of peanuts may help children with peanut allergies greatly increase their tolerance to the food. As reported in the New York Times, the new treatment uses doses of peanuts that start as small as one-thousandth of a peanut and eventually increase to about 15 peanuts a day. In a pilot study at Duke University and Arkansas Children’s Hospital in Little Rock, 33 children with documented peanut allergy have received the daily therapy, which is given as a powder sprinkled on food. Most of the children are tolerating the therapy without developing allergic reactions, and five stopped the treatment after two and a half years because they could now tolerate peanuts in their regular diet.

While the Duke Study has only proven successful for a handful of children to date, we feel considerably blessed that we are part of this ongoing research. Our study is different in that Abigail is not given powder, but a dosage under her tongue. However, we feel confident that she too can benefit from this therapy. On a recent visit to Duke, we found out that an adult doing the sublingual therapy (the same one as Abigail) recently passed his food challenge and was able to successfully consume a large quantity of peanuts. That gives us real hope.

Wednesday, July 1, 2009

Getting into a Routine

We've been to Duke now 4 times. The last visit was just yesterday on Tuesday, June 30th. It was a routine visit. We check in at the front desk and then head to the lab (pictured to the left). There Abigail's blood pressure and temperature are checked and height and weight are logged. We head to a larger room where we spend the next hour and a half. It's a community room and can be filled with lots of kids participating in the same study, their parents, a nurse and our doctor. We haven't met our new doctor yet. Our doctor for our first three visits was Dr. Bird. He was fabulous but his Fellowship ended and he left for a permanent position in another state. Abigail is quite nervous about our new doctor, but we've been reassured that he is equally nice.

She is greeted, we turn in our daily log, confirm our case number, report anything unusual and then she is examined for any unusual marks, bumps or anything that might be taken as a reaction. She is then given her new dosage. This last time, she was given 2 drops of 1/100 dilution which she holds under her tongue for 2 minutes. I'm often asked what the equivalent is in peanuts. I don't know and need to make sure to ask next visit. For the next hour and a half, she is periodically monitored. After 30 minutes she can eat which appears to be the highlight of each of the kids' visits. They get to choose off of a menu: cereal, bagels, grits for breakfast, sandwiches, chips, pretzels or cookies for lunch and there's fruit, juice and ice cream for an extra treat.

Then we wait. Moms chat, compare notes and ask lots of questions to the doctor and nurses. Kids are entertained playing with each other or watching movies. This summer we take cards and puzzles. This fall, we'll be doing homework.

One more check and then we're heading home. I expect most visits to follow this routine. On our third visit Abigail had to spit in a cup for a saliva collection. Gross for the girls...nothing but fun for the little boys. There are a few visits that require skin prick test and blood draws. She'll get a private room and extra attention at those.

We didn't see a reaction this visit. On her second visit and for several days after, her ears itched a great deal. They haven't since. I had hoped that it was a confirmation that we weren't on the placebo. Abigail's the 37th participant in this study and so far no one has seen a hive or other visible sign of a reaction until the 4th or 5th dosage increase. I was really hoping to see something at this visit. Maybe next time at the 5th visit. Of course, we've been reassured that if we don't see a small reaction, that it doesn't mean we're not getting the real stuff.