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.