Thursday, December 24, 2009

Merry Christmas!

It's Christmas Eve.  The kids are in bed, presents are wrapped and under the tree, fruit salad and a breakfast casserole are ready in the refrigerator, and my husband and I are enjoying our first chance in days to sit down, watch a Christmas movie on TV and drink a glass of wine. 

I did want to take just a minute to wish everyone a very Merry Christmas!  I hope you've enjoyed the weeks leading up to tomorrow as much as I have...the parties, the picking out a Christmas tree, the shopping, the decorating, the special church services and the baking. 

I'll be posting again after the first of the year with the details of my first ever give-away so check back.  Also, the results of the food challenges for the first few clinical trial participants should be in so I'll update you on that as well.

Hope everyone has a fabulous Christmas and New Years!

Tuesday, December 8, 2009

An EpiPen Experience

Let me first start out by thanking the mom that is allowing me to post about her family's recent experience requiring an EpiPen.  She originally shared her story with members of the Parents of Allergic Kids Yahoo Group.  There is some really good lessons that I'd like to share with my readers so I asked if I could also publish her experience on my blog.  Here's her story:

"My son had an allergic reaction which resulted in the use of the epipen. This is only the second time that he has needed the epipen in his 13 years.

But the good news is: the EPIPEN WORKS!!!!

My son is allergic to peanut, treenut, dairy, egg, sesame, mustard. We also avoid fish and shellfish. The reaction occurred at a restaurant we visit quite regularly…the manager knows us and they get his food started when they see us walk in. The reaction started when he took bites of chicken and carrot and had some of his drink…so, we're not sure where the contamination was.

His tongue and throat felt itchy and his throat started feeling clogged. He took Benadryl. I asked him if maybe he was feeling itchy and had a lot of mucous because he had stopped his Zyrtek (in anticipation of upcoming allergy skin test) - this happens to him sometimes. He said that he knew he was having a reaction because the water felt like it was barely trickling down his throat…he said that it was like it went into his throat but it was going down one drop at a time. On way to hospital by this time. I kept telling him to drink his water…wanting to monitor his swallowing plus hoping to get the Benadryl in his system faster. He said he thought he might be a little better so I thought the Benadryl might be working. Then, 1-2 minutes later, he said that all of the sudden he feels like there is something huge stuck in his throat and like someone is sticking a knife in the bottom of his throat. Pulled over and did Epipen.

Last time he needed the Epipen, I was holding the Epipen and my husband was coaching me to "do it." This time, I was telling my husband to do the Epipen.  When you're the one holding the Epipen - it's difficult to convince yourself that you need to give the shot. Soon after he had the Epipen, my son described the feeling to me as 'all the stuff in my throat is dissolving and now I can swallow.'

Normally - the appropriate protocol is to call 911 after giving the Epipen. We were close enough to Levine Children's Hospital and the Epipen was obviously working so we drove there and I called to alert the ER that we were on our way. They kept us until it had been 4 hours since the "incident" and also gave him oral steroid.

Of course, ask your doctor for the best individual action plan because I'm not qualified to give this kind of "advice." But, I learned recently (since the reaction) that at the first sign of any throat symptoms - give the Epipen. I had always thought that you should start with Benadryl. However, the Epipen is not scary, does not hurt and works quickly and effectively.

One thing the hospital didn't tell us…which I think they maybe should have…was to keep Benadryl in his system for a while. That evening, he looked and felt terrible - pale, shaky, nauseous - so I called our pediatrician just to get reassurance that all of these symptoms are expected side effects of meds. since it was already about 7 hrs. since Epipen and 5 hours since oral steroid. The pediatrician said she suspected that he was feeling side effects of meds - probably steroid - and she also told me to give him another dose of Benadryl.  After she suggested that…I remembered that we got that same recommendation after his reaction 3 years ago. However, at hospital discharge, they did not tell us to give a follow-up dose of Benadryl…wonder why that wasn't part of their protocol."

I really hate that she and her family had to experience this, but I'm so glad she shared.  The part describing what her son was feeling as his throat was swelling was particularly moving, but also very helpful if I ever needed to help Abigail identify what she was experiencing.  A few take-aways: 1. No matter how many times you frequent a restaurant or purchase what you feel is a safe food brand, for people with severe food allergies, there is always a risk.  I feel most confident with manufacturers that label a food allergen if there's  even a small risk of cross-contamination, and of course, if I prepare the food myself.  2.  Always carry an EpiPen and do not hesitate to use it if the situation calls for it.  Our doctor at Duke told us that if in doubt (obviously there's no doubt if someone is having difficulty breathing) the best way to tell if you should use an EpiPen is if multiple systems are reacting.  For instance, if you are experiencing hives (a skin reaction) and vomiting (a stomach reaction), use the EpiPen and then call 911.  3.  I had not heard about continuing to use Benadryl even after leaving the hospital.  It's good advise.

I truly believe that the best way to arm yourself and loved ones against the life-threatening effects of a food allergy is knowledge.  Thanks to this mom for giving us another lesson.

Sunday, December 6, 2009

Celebrating a 40th Birthday!

No, not mine.  At least not yet.  This weekend, we celebrated my husband's 40th birthday.  Actually, we celebrated it last weekend too.  After Thanksgiving, we spent several nights in the NC mountains.  One afternoon while there, Abigail and her brother helped me surprise their daddy with a party complete with cake, 40 candles, a banner they made and party hats.  And, this weekend, the kids stayed with my parents (thanks mom and dad!) so that we could have a kid free weekend.

Purchasing bakery cakes is pretty much out of the question when you have an allergic family member.  I make all of our family's birthday cakes.  For my husband's birthday, I traditionally pick up a box cake mix (Pillsbury or Betty Crocker because of their good allergen labeling practices), a can of frosting and a jar of sprinkles.  This year, I'm making a serious effort to try to eliminate the additives and other junk ingredients from our diet, so I thought I'd bake a cake from scratch.  It turned out so good and was so easy to make that I wanted to share.

I found a recipe for an Old Fashioned Gingerbread cake on  After reading through many of the reviews and recipe suggestions, I found a version that sounded fabulous.  Here's the recipe:

1/2 cup white sugar
1/2 cup butter
1 egg
1/2 cup molasses
1/2 cup pumpkin puree 
2 1/2 cups all-purpose flour
2 teaspoons ground cinnamon
2 teaspoons ground ginger
1/2 teaspoon ground cloves
1/2 teaspoon salt
1 cup hot water

Preheat oven to 350 degrees.  Grease and flour a 9" square pan (I used a 9" springform pan).  In a large bowl cream together the sugar and butter.  Beat in the egg and mix in the molasses and pumpkin puree.  In another bowl sift together the flour, baking soda and spices.  Blend this into the creamed mixture.  Stir in the hot water and pour into the prepared pan.

Bake 40 to 45 minutes or until knife inserted in the center comes out clean.  Allow to cool in the pan before serving.

I used organic butter, flour and pumpkin puree.  Because we were heading out of town, I made the cake in advance and froze it which made it easy to transport in the cooler.  I thawed it in the refrigerator and then heated it for a few seconds so that I served it warm.  For an extra treat, I even made the whipped cream topping.  I will continue to make our own now that I know how easy it is.  It's so much better for you than the frozen whipped topping and canned whipped cream at the grocery store.

My husband and kids loved the gingerbread cake.  I even let Abigail eat a piece several mornings for breakfast thinking that it was better for her than a frozen waffle or bagel.   I'll definitely make this cake again...maybe even for Christmas morning!

Enough about the cake.  I want to wish a Happy 40th Birthday to my wonderful husband!  Here's to another 40!  Thanks for being such a fabulous guys!  Love you!

Thursday, December 3, 2009

Too Much Rain

We were scheduled to go to Duke yesterday for Abigail's final dose increase before hitting the maintenance stage of the trial.  After hearing the forecast, I decided to postpone our appointment until next week.  I know that sounds crazy, but the weather forecast called for heavy rain here, there and all the way in between.  It seems like every other visit to Duke I'm driving in heavy downpours, and it is miserable.  Besides, the kids are staying with my parents this weekend and will already be three quarters of the way to Duke.  Made more sense to swing by and pick up Abigail Monday morning and head to Durham as opposed to going Wednesday and then driving both Saturday to drop them off and Sunday to pick them up.  Unfortunately, Abigail will miss a day of school, but then again, she is only in the 1st grade.

So we'll go on Monday, and then not again until the end of January.  That visit is only scheduled to take 45 minutes but will be a lab visit meaning a blood draw, skin prick test and saliva collection.  Given our tract record, that visit might actually take more than 45 minutes.  After that, we don't go back until mid April when we'll discuss the logistics of the food challenge which will be the end of May.  In the meantime, I'll be checking in to find out the results of all of the food challenges prior to Abigail's.

I've attached a link to an ABC News segment.  It features Dr. Burks discussing the clinical trial research.  What's neat about the segment is that you can see where we go every visit, how the drops are administered and even see some of our great nurses.  Here's the link:

Children's Food Allergies Escalate

I'm working on my first ever product give-away.  I'm quite excited about it.  Hopefully by next week I'll have all of the details worked out.  So, visit again soon.