Back to School with a Peanut Allergy

Is everybody ready for another school year to start?  Today was finally the turning point for me.  Up until today, I was a little melancholy that the summer was coming to an end.  I feel we've been so busy that we've not had enough time to just relax and play.  But after yet another day of donning my black and white striped shirt to referee yet another disagreement between my 7 year old and 3 year old, I decided it was time for the kids to go back to school.

I met with Abigail's 2nd grade teacher this morning to discuss her peanut allergy.  For the first time since she started school, preschool included, there is another child with a peanut allergy in her class.  Her teacher had not yet met with his parents, so I wasn't able to discern how serious his allergy was or if the parents were super, super vigilant or really low key (I tend to come in somewhere in the middle...cautious, safe, but with the attitude that she still has to live her life to the fullest).  I think it will be good to have another child with a peanut allergy in the class unless either his allergy is not as serious or his parents don't take it as serious and then the students might receive mixed messages, i.e., why is it okay for him, but not Abigail? 

Like last year, this morning I took in a letter of introduction to send home to the parents of her classmates, a Peanut Allergy Action Plan, a list of peanut safe snack/treat suggestions, an Epi Pen practice injector (which wasn't required because her teacher carries one for her own bee sting allergy) and some ideas for a class discussion on food allergies.  This year for the first time I'm going to go into the classroom at the start of the school year and review the "Be a PAL" (Protect A Life) brochure with Abigail's classmates.  I've found a food allergy word search puzzle that they can take home, and if the video is any good, I'll also take in the "Arthur: Binky Goes Nuts" video for the kids to watch.  I checked it out from our public library today and will preview it tomorrow.  I'm also thinking about taking in some snacks to show them how to read the label, and maybe, if it wouldn't embarrass Abigail too much, an expired Epi Pen and an orange to let her show them how to administer it.  I'm wondering if 2nd grade is too early for that?? Lastly, I'll have a certificate ready for each child, also from the FAAN site which names them "Hero's" for looking after their friend's safety.

But, it doesn't end there.  We have a letter ready to give to both her morning and afternoon bus drivers along with a copy of the Peanut Allergy Action Plan, I have school medical authorization forms for the antihistamine and Epi Pens at the pediatrician's office to be signed, I'm waiting for a new prescription to be called in to replace her soon-to-expire school Epi Pens and I've purchased more antihistamine fast melt tablets for a still-have-to-be-packed medicine bag.  And, just one more day left to get it all done!

What I haven't done, and probably won't is complete a Section 504 Plan.  I know lots of moms that do, and if Abigail had multiple food allergies, or if her school was unaccommodating, then I probably would.  If you're unsure, the Food Allergy Initiative site is a great resource in determining whether you should and for giving lots of information to better understand the details of the law.

One more day of summer, and then it's back to school for my big 2nd grader.  I'm hoping it's a fun and peaceful day.  If you're interested in all of the forms I mentioned, be sure to check back in the next day or so.  I'm hoping to set up the links in a separate column to the right of the posts.  Good luck this year!

Columnist Changes Tune

Pick an adage, "open mouth, insert foot", "eat crow", "change in tune", "what goes around comes around", they all apply to columnist Joel Stein.  Back in January of 2009, he wrote an opinion article for the Los Angeles Times titled "Nut Allergies - A Yuppies Invention."   Here's his opening paragraph.."Some kids really do have food allergies.  But most just have bad reactions to their parents' mass hysteria.  Your kid doesn't have an allergy to nuts.  Your kid has a parent who needs to feel special."  Lovely, huh?  Glad I missed it.

Mr. Stein recently had a follow up article published just last week in Time titled "Aw, Nuts!" in which he describes the experience of having his 1 year old son eat some mixed nuts and then rushing him to the emergency room with symptoms of hives, swelling eyes and vomiting.  Yes, his son has a nut allergy.

There was a lot of backlash from the food allergy community to Mr. Stein's first article.  Having just read it this week, I can understand why.  I'm not going to go into a detailed review of his article, you can read it and see.  It's funny that the part that rubs me wrong references the same study that I did in a past post (http://peanutclinicaltrial.blogspot.com/2010/03/allergic-reaction-anxiety.html). It was a study done in 2003 regarding allergy anxiety.  It showed that kids who were told they were allergic to peanuts had more anxiety and felt more physically restricted than if they had diabetes.  I referenced the study to indicate how hard it is to help children with life-threatening allergies to remain well-adjusted.  Mr. Stein used the study as a follow up to his comment, "Parents may think they are doing their kids a favor by testing them and being hyper-vigilant about monitoring what they eat, but it's not cool to freak kids out."

Cool or not, as parents, we are doing everything in our power to keep our children safe, and if that means that our kids need be taught to monitor everything they eat, then so be it.  Obviously, this statement came from a time when Mr. Stein didn't understand the reality of living with a life threatening allergy.

I wish the best for him and his son.  They've got a long journey ahead.  Having a severe food allergy is no walk in the park for either the person with the allergy or their family.  Having a food allergy and a dad that has nationally "opened mouth and inserted foot" is going to be quite the challenge.

Summer's Bounty

I have just a small, organic garden, but it's produced a great summer bounty.  I just took a quick picture of what's sitting on my counter right now.

It doesn't include what's in my fridge.  Just goes to prove that you don't have to be an expert or have a ton of space to grow fresh veggies.

Here's before and after pictures of the garden space. It's just 3 feet by 12 feet.  The fence is only necessary if you have wildlife, i.e., rabbits or "lots of help", i.e., a 3 year old.  I felt really silly having my husband drive 8 foot posts in the ground for my tomatoes, but I've actually had to cut out some of the top branches and tie them up because they've started hanging over.

This year I added a smaller 2 foot by 6 foot space and put additional zucchini and squash plants as well as canelope and banana peppers. Obviously, the melon (my first ever) was quite happy and tasted super good!

So if I haven't been posting like I should, my garden is to blame.  I have to cook or freeze what I've grown.  This wasn't the summer to learn to can or preserve.  Maybe next year?

Organic Milk...Better for you and improves allergy symptoms.

There's a link between drinking organic milk and the reduction of allergies and eczema. In an article entitled Organic Milk Linked to Fewer Allergies Including Eczema and Asthma, the author references a Dutch study that suggests that children are one third less likely to suffer from allergies before age two if they're raised on organic dairy products.  Both child and breastfeeding mom were given organic dairy products, and the researchers found that there was clear evidence of less incidences of eczema as well as a decrease in the risk for other allergies and asthma.

I've written about this in a prior post, but when Abigail was a newborn, her cheeks were red, raw and inflamed.  I was breastfeeding, and as soon as I eliminated dairy (non-organic at that time) from my diet, her cheeks cleared up.  When we started her on formula, we gave her a soy-based formula and when it was time, gave her soy milk.  By the time our second came along, we had made the switch to organic foods.  He also showed an intolerance to dairy, but instead of soy formula, we used a lactose free formula.  He does still drink organic soy milk but eats organic dairy products.  Interesting that Abigail has the peanut allergy, had bouts of eczema and was frequently on Albuterol or Pulmicort for wheezing.  Our son did have regular ear infections until tubes, but still shows no signs of any sort of allergy.

According to the article, researchers believe that organic milk may be better due to the higher concentrations of conjugated linoleic acids (CLA).  Wikipedia states that "meat and dairy products from grass-fed animals can produce 300-500% more CLA than those of cattle fed the usual diet of 50% hay and silage, and 50% grain.  CLA is also known for it's anti-cancer, body weight management, anti-inflammatory and cardiovascular improvement properties.

Organic milk also has as much as 71 percent more omega-3 fatty acids.  Omega-3 is a alpha linolenic acid (ALA) and is most commonly found in flax seed products and cold-water fish.  You've probably seen products containing DHA and EPA fatty acids which are also omega-3 acids and both have significant health claims.  The omega-3 acids are known to support the development of brain, eyes and nerves, reduce the risk of heart attacks and strokes, have significant anti-inflammatory benefits that promote immune system enhancements and provide anti-cancer effects particularly for breast, colon and prostate cancers.  According to Wikipedia, recent studies are also showing a positive benefit of omega-3 fatty acids for ADHD as well as psychiatric disorders. So, if there was ever a case to switch to organic milk, this is probably it.

I don't pretend to understand the science of milk production, but wanted to pass on one last thing that I learned.  I've recently started purchasing organic milk that comes from a small, family-owned farm.  It's pasteurized to the point where it meets state laws, but not beyond that.  First off, it tastes wonderful.  Second though, is the claim that many lactose intolerant people can drink it without issue. Wondering why, I searched the internet.

According to a paper I found written on the subject of lactose intolerance the problem is mostly limited to the US.  The author writes that the stripping of nutrients in the pasteurization process causes lactose intolerance.  She writes that the " intolerance is caused by a lack of the enzyme lactase in large enough quantities within the human digestive system to break down lactose, a fairly complex disaccharide found in milk.  Raw milk contains harmless bacteria which produce lactase which, in turn, enables the human body to break down and absorb lactose.  Pasteurized milk has had all of these bacteria killed off and is therefore lactase-free, but still contains lactose, causing problems for many people who try to drink it."  Apparently, there are also studies tying pasteurized milk products to decreased bone density, weakened tooth enamel, vision problems (from vitamin B6 insufficiency), and to a large increase in asthma.

What I've taken away from all of this is that while organic milk is best for everyone, if your family is prone to allergies, eczema and asthma, organic milk is even more important, especially milk that is not ultra-pasteurized.  Minimally pasteurized milk is even better if you have access to a local dairy.  Second, essential fatty acids are very important in our diet.  I've found chewable omega-3 supplements that are peanut/tree nut safe for Abigail and have started adding flax seed to my baked goods.

Just one last CIA statement...as with all supplements, do your own research, contact your physician if you have any questions, and this should go without saying, if you have a fish allergy, make sure you're getting omega-3 from a non-fish source.  Readers with life-threatening milk allergies also shouldn't enjoy the benefits of organic milk.

Not all Sunshine & Roses

There can be a darker side to participating in a peanut clinical trial as a mom in our community recently discovered.  We had a "sunshine and roses" food challenge experience, i.e., it was all good.  Her and her son....not so much. With her permission, I thought it important that you hear her story.  And, don't worry, it's not all doom and gloom.

They had a rough go of it right from the start.  Her son was one of the original and unlucky participants in the SLIT trial at Duke that was impacted by a lab snafu and had to re-start the trial.  This was after having already driven back and forth for months.  She lives a couple of towns over from me, and it's a long drive.  I can attest to how horrible it would have been if Abigail had to start over.  In her son's case he had been on the placebo drops and would have had to begin again anyway.  In my opinion, I think that's somewhat a blessing.  I think it would have been even harder to bear if a child had been on the peanut protein and still had to start over.  Fortunately, these children were guaranteed that they would receive the peanut protein drops when they re-entered the study.  Needing a break, they didn't immediately re-enter and ended up starting back after us.  So, with Abigail's food challenge success fresh in her mind, they showed up for their 8 a.m. appointment.

He received the placebo during the morning challenge.  During the peanut flour challenge that afternoon, all was going well, and he was showing no clinical signs (rash, hives, runny nose, stomach pains, vomiting, etc.) of a reaction.  By the next to the last dose though his mom's gut instinct was kicking in, and she was ready to call it quits.  It was that final dose that did it, and her son went into full anaphylaxis.  From her account, our doctor and nurses handled the situation fabulously.  They gave him Benadryl, and were ready to wait to see if that was enough.  Seeing her child the reddest of reds, covered with baby hives and having difficulty breathing, she insisted that they give him an epinephrine injection.

Having made it through all the doses, I can just imagine the shock of seeing the worst of reactions with no signs leading up to that point.  Our doctor recorded that he was able to tolerate 8 of the 9 doses.  Her question though, and a very valid one, is what if it was a delayed reaction?  What if given more time between dose increases, he would have had a reaction at a smaller dosage?  Without another food challenge, it's probably impossible to say. And, given her experience, she confirmed that that wasn't going to happen again anytime soon.

Now, for the positive.  Bottom line, he was able to consume peanuts, and with a starting IgE number of over 200 that's significant.  He probably could even consume enough to eliminate considerable worry about the possibility of cross-contamination.  And, more importantly, her son is no worse for the wear!  He still takes his drops without worry.  Can't say the same for mom.  She's a little traumatized over the whole experience and says knowing that after consuming an unknown amount of peanuts, he can go from 0 to 100 without any type of warning had her doubling the amount of Epi Pens they kept on hand.  She also feels guilt over having put him in that situation to begin with.

They're sticking with the study. Like us, I think they feel blessed that they do have the opportunity to participate.  I know so many of you readers pray for that time when either the end results of these clinical trials are available for you or your children or such time when a clinical trial comes to a location nearby.  We do this with the full realization that we're providing our children a different path down life's very difficult journey.  Having had to experience an anaphylactic reaction really stinks, and it's not something even our doctors want to have happen.  But, in her case, it was part of providing that different path...that path to becoming peanut allergy free!

Summer Time!

I think this is been one of the longest times between posts since I started my blog.  What's my excuse?  Summer!  The kids are home, and if they're not off making a mess and getting into something they shouldn't (specifically my 3 year old son), they're fussing or fighting, needing a snack, complaining about being bored or wanting to go somewhere.

There was the food challenge at Duke, then Vacation Bible School.  After that, we started potty training my youngest.  It went surprisingly well, and so far no pee pee accidents.  Can't say the same for the other.  Regardless, it's a huge time commitment.  I also made a promise to Abigail that she would be able to swim the length of the pool by the end of the summer so there's been swimming lessons for her and my youngest (he wouldn't even get in the water 2 months ago) and trips to our neighborhood pool to "practice".  Can't forget the shuttling to summer camps, special outings and play dates which all require time away from the computer.  I've started a training certification program which I'll write about in more detail later.  And last, but not least, the garden.  I love having a garden, but my goodness, it's a lot of work.  There's definitely a science behind gardening, and I haven't come close to mastering it.

Anyway, I haven't forgotten you guys.  I hope you are also enjoying your summer. I really shouldn't complain, we're having a great time.  We're being inundated with reminders that school is just around the corner, and I'd like to savor this time a little longer.

Look what we found!!

During our food challenge at Duke a couple of weeks ago, our nurse mentioned that she had purchased a candy bar made with sunflower butter at World Market.  The other night we were in the area of our local World Market so we stopped in to see for ourselves.  Look what we found!!

Nut Free Sun Cups!  Remind you of anything??  What a treat!  Abigail has never eaten a Reese's Peanut Butter Cup, and I can't remember the last time I have eaten one either.  But, this is no ordinary chocolate treat.  It's made in a nut free facility, is organic and is gluten free!  Seth Ellis Chocolatiers in Boulder, Colorado took it a couple of steps further.  They use Fair Trade chocolate, the Sun Cups are Kosher certified and the foil outer-pack is home compostable.  I mean...wow!  Here's the link to their spec sheet if you want to see the full ingredient listing.  By now, though, you are probably wondering how they taste.

The Sun Cups are available in both milk and dark chocolate.  We sampled the milk chocolate cups first (actually they're a blend of both milk chocolate and white chocolate).  Now mind you, we (my husband, son and I) eat sunflower seed butter on a daily basis so we've acquired a taste for it.  Abigail will occasionally eat some on a cracker, but it's not a staple food for her like it is the rest of us.  As to be expected, the cups have a slight sunflower seed taste, but the chocolate is nice and firm, and it's not oily in the center like it's peanut butter counter-part.  Abigail loved them both, but my favorite was the dark chocolate. To me, it had a more rich chocolate taste than the milk chocolate Sun Cup.  They were a hit with all of us, and we had to refrain from opening more packages.

I contacted Seth Ellis Chocolatiers to get some more information.  You can currently purchase these online at www.peanutfreeplanet.com and while Amazon.com has them listed, they're not yet available.  When they told me that World Market is not going to continue stocking them, I took the kids for a little shopping spree (maybe if everyone went on a shopping spree, World Market would change their mind).  The list price for the Sun Cups at World Market is $1.99, but this last weekend they rang up at $1.50.  Today when I purchased them, they were $ .99.  Seeing that, I doubled what was in my basket.

I had another thought as I piled over a dozen packages in my basket today.  If all of our prayers are answered, in another year and a half, Abigail will be through with the clinical trial, and we will be adding peanut products to her diet in order to maintain her tolerance.  One of the issues for children coming out of the clinical trial is that they dislike the taste of peanuts...call it a self-preservation instinct...yet they have to consume a certain amount on a weekly basis.  At some point, I'd planned on eventually working sunflower butter in Abigail's diet so that she'll hopefully have an easier time acquiring the taste for peanuts.  Considering she scoffed down a Sun Cup immediately upon getting in the car today after our shopping spree, this is definitely one way to start.