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.

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.

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.

Our First Visit to Duke

Our first visit to the Duke Clinical Research Unit at Duke University Hospital was on May 18, 2009. We've since been 2 more times. I've got some catching up to do.

My first post is of an e-mail I sent to family and friends after our first visit. I've since been encouraged to document our journey in a blog. It will be my first attempt at blogging so I guess I'm embarking on 2 journeys so to speak.

Here's the e-mail....

Abigail officially started her Sublingual Immunotherapy for Peanut Allergy, or in other words, her clinical trial to hopefully decrease her allergy to peanuts.

It was a long morning that required an IV, blood work, skin prick testing and a saliva test. Abigail did fabulous! She also got her first dosage of either the crude peanut extract (we hope) or a placebo. They start with such a tiny amount (applied with a dropper under her tongue) and they don't expect a reaction until maybe the 4th or 5th trip. We'd actually get really excited if she did get a hive or some sign of reaction because we'd then know that we were getting the peanut product. We will be going to Duke every other week for a year to continue the build-up. At each visit she will receive a higher dosage. If she can tolerate it, then we take that dosage home, and she gets it every day. I have to keep a detailed log and watch her for symptoms for 2 hours after the dosage. At the end of the year, she does a food challenge which will last about 10 hours (I'll give out more details on that as we get closer). At that point, we officially find out what group she was in. If she was in the placebo group, we re-start the study with the peanut extract for another 12 months. If she was in the peanut group, then if she passes the test, we continue building up her tolerance for another 6 months ending the study at 30 months with another food challenge. If she passes that one, then we will be instructed to add peanuts to her diet and to eat a normal portion on a regular basis. I don't have to tell you guys how big a deal that would be! To go from a lifelong possible risk of death if she ingests even a tiny amount to purposely eating peanuts to maintain her tolerance.

On a side note, there is another study at Duke that started several years before this one where the children ingest peanut flour. Some of those children have finished and are now trying to decide what their favorite peanut product is because they are eating it every day. So, there are positive results. Our study is a subset of that one, overseen by the same doctor and is being conducted in an effort to find a way to better commercialize a treatment.

So, we will be traveling to and from Duke more times than I care to count in the next couple of years. Lucky for us, both sets of parents live in route so Nathaniel will not need to sit through each 2 hour visit. The staff was great. She is assigned a personal nurse at each visit that is there to pretty much coddle her. There is a huge closest full of games, puzzles and movies. They bring in a menu with snacks and such that she can order from. And there appears to be a whole social network of kids and parents. While we were there, we met 3 other little girls her age doing trials for milk and eggs allergies. I've been told by other moms with kids in the study that their children actually look forward to the visits because of all of the special attention.

Dave and I would like to thank everyone that sent us well wishes and that offered up prayers for our visit yesterday. We went in with some apprehension and lots of questions. Abigail was really brave. Considering we've only made the drive once, I can say it wasn't that bad. Ask me again in 6 months. At least we've got the summer to get into a routine.

Blessings,

Melanie


View from the parking deck. The bridge to the building is on the left.