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Wednesday, April 25, 2012

Allergy friendly party food for kids

My regular readers know from my last post that we are very excited for Chloe and Quinn's birthday party this weekend!  My regular readers also know that we have many dietary restrictions due to Cassidy's EoE (more on that here) and will likely have even more in the future since Chloe has also been diagnosed. I don't expect the world to accommodate my children's food allergies, but this is a party for them and I feel strongly that they should safely be able to eat pretty much whatever they see under such circumstances.  As I have mentioned before, our current list of allergens for Cassidy includes dairy, eggs, cauliflower, cucumbers, cantaloupe, peanuts, apples and zucchini.  In addition, there will be several other party guests with allergies, in some cases life threatening ones, to shellfish, peanuts, eggs, milk and tree nuts.

 When we have a birthday party for the kids, either for family or for friends, we usually have basic finger foods for grazing, but we try to name the snacks things that fit in with the theme.  Makes it easy, it keeps it fun.  For this years Star Wars/Woodland Fairy party, Quinn's side of the table will have Vader Veggies, Wookie Cookies, Death Star Donuts and maybe some Jedi Juice.  Chloe's side will have Fairy Berries, sticks and branches (pretzel sticks and rods) and Pixie Heart Cookies.  Both sides of the table will have cupcakes, too.  All of the food will be allergy safe for Cassidy as well as all of the party guests. 

To start with, because allergies to peanuts, tree nuts and shellfish are often life threateningly severe, I choose to just avoid these completely when we are hosting a party for children.  I'll make the cupcakes (I have yet to find delicious cupcakes that meet our allergy needs without making them myself).  I use the chocolate cake recipe from the Food Allergy Mama blog, which you can find here.  If you are a new or seasoned food allergy baker and are not familiar with this blog, you should really check it out! Her recipes use regular ingredients that you probably already have in your kitchen or are readily available at grocery stores.  Love that!

The fruit and veggies are easy to pick up; I order the veggie tray without cauliflower since it is Cassidy's favorite and she can't have it.  She is old enough to know that she should just avoid the cucumbers, and they are always a favorite with everyone else, so we keep those on the menu.  The fruit tray we just order without cantaloupe, easy peasy. We will have juice boxes, which pretty much all contain apple juice, so I also get a couple of packs of chocolate soy milk boxes.  That way Cassidy has something to drink, and of course any other kids with (or without) milk allergies are welcome to them as well. Pretzels are safe for everyone and another option is plain potato chips.  Just make sure they aren't cooked in peanut oil!


Other than that, since I have been busy making fairy wings, light sabers and goody bags, the donuts and all of the cookies (chocolate chip, star wars and hearts) I ordered from my FAVORITE allergy friendly baker, Jenny.  She keeps a vegan kitchen (certainly no shellfish, eggs or dairy there!) and has designated bowls and utensils for baking without peanuts and tree nuts.  Her baked goods and candy are fantastic and very reasonably priced.  She also has always been able to accommodate our extensive allergy needs.  She saved the day for our Christmas celebration, and has saved me endless stress by providing the cookies, donuts and candy for Chloe and Quinn's party.  Aren't the heart cookies pretty?  Those are also her sparkle mini donuts pictured at the top of the page. To check out her other selections, place an order or contact her, you can visit her Etsy shop, HippieCakes, here.

Once we introduced food allergies into our already busy life with 4 kids, a dog and 2 self employed parents, I had to officially accept that I cannot do everything myself.  While this has always been true, (for me and for everyone else on the planet if we want to be honest) in order to give my kids the care, attention and emotional support that they need as well as still allowing them to be kids all while maintaining at least a little bit of my own sanity, I have had to formally accept that I am not superwoman. 

This week my laundry is piling up and the house is messier than usual, but it's a small price to pay for the look on my kids' faces during their birthday party.  Besides, I'd rather make fairy wings and light sabers with my kids or snuggle on the couch and read to them.  This week we have streamlined the process of creating a birthday party that is worry free for food allergy kids (kids shouldn't have to worry at birthday parties anyway!) and sure to be fun for all. That's like conquering our own little corner of the world! Everyone is safe, well fed and very well loved at the end of the day, which is certainly a priority as far as I am concerned. I guess the laundry will just have to wait until next week.

Monday, April 23, 2012

Fairies, Jedis and eosinophils...

So I'm at least a week or so late in posting this, but those of you who also follow me on Facebook have had some minor updates.  The official biopsy numbers are in for Chloe, and have confirmed her diagnosis of EoE, just like Cassidy, which you can read about here.  We were not surprised, in fact, after the concerns we went through with Cassidy prior to her diagnosis, it was actually almost a relief to know that Chloe has the same disease and not something more devastating.  We have started the 3 part allergy testing process with her, and will move forward one step at a time once we have the answers provided by that process.

In the mean time, Miss Chloe and her partner in crime (and twin brother) Quinn will be 5 years old in just a couple of weeks!  This year they are having their first big birthday party which includes inviting friends.  We usually celebrate birthdays with a small family gathering in our house, so the kids only have a "friend party" once every few years.  We actually try to rotate it so one kid gets to have a big party each year. The shindigs start the year they turn 5.  While we will never force the twins to share a party if they don't want to (not their fault that both buns were bakin' in the oven at the same time!) this year they were wild about the idea of doing it together.  Probably because since they are in the same preschool class, they pretty much have just one peer group and they are only 5 so they basically love everyone.  Works for me.  They still each picked a theme, though.

Quinn wanted a Star Wars party, and Chloe's dreams will play out as a Woodland Fairy party (she was very specific about that, not fairy princesses or Disney fairies which she also loves, but "real" fairies, which she calls woodland fairies).  So we are setting up at a local orchard with a large play area,  and they also provide hay rides for the kids and let them feed the farm animals.  What I call the "play area" is actually a slightly hilly field with wooden play structures scattered about, a huge sandbox and some picnic tables under large shady trees.  Perfect for a bunch of little kids running around with light sabers and fairy wings.

All of the girls will have fairy wings and crowns that I made, and all of the kids will have light sabers made from pool noodles and duct tape (I love duct tape!) Chloe wanted all of the girls to have complete fairy outfits, but that was really just too much.  Chloe will be in her fairy finery, but for the guests I think that they can dress in whatever they like, and providing them all with wings and crowns is plenty, don't you?  I actually really enjoy party planning, but if you have to take out a second mortgage on your house to finance a party for your 5 year old, you have issues. I have been to more than one party that was clearly thrown in an attempt to out-do the other moms and parties, and I find it to be creepy and excessive.  Get your head out of your ass.  It's your KID'S party, not yours.  If you have hyped it up until they are overwhelmed or disappointed in a too-sophisticated version of a theme, you have completely missed the point.  The idea is to celebrate the CHILD, not impress the town with the party of the year.  Don't get me wrong, there is nothing wrong with taking one or two of your offspring's youth driven "big ideas" and running with them (I did, after all, make 10 sets of fairy wings from scratch), but some of what I have seen, both in person and online, is horrendous. 

As I said, we don't do big parties every year, and this past year has been significantly stressful, exhausting and draining both physically and emotionally for all of us but especially for the birthday girls herself, Chloe. And it should not be overlooked that this has directly effected her twin brother as well, as they are especially close. So while staying within what I see as rational bounds for a child's birthday party, we have tried to really do it right and let the kids express their dreams.  Important distinction here, what qualifies as a self described dream party for a 5 year old is probably MUCH less than we would come up with as our version of a dream party.  They request things like a fruit platter, juice boxes, cake and friends.  Really, the basics. For some reason they especially love to help with planning the goodie bags, though, and they had some really good ideas! I don't want to spoil the surprise for any readers who may be attending, so I'll cover those in my next post. But I will say that it is very touching to me when my little ones say that they want extra special goodie bags for their friends, and I don't think they even realized that the friends would be bringing gifts until we talked about good manners and thank you notes.  For them, it is about the heart, not the hype, and that is how it should be.

As for the extras that we let them add, the light sabers and fairy wings, the kids envisioned Jedi battles and frolicking fairies in the grassy hill at their favorite orchard.  Total cost of the light sabers? $0.50 each.  Total cost of the fairy wings? $1.60 a pair, plus 20 minutes of my time.  Given the rough year and the infrequency of the big parties, a small price to pay.  Plus I really enjoyed it, and it is bringing my kids genuine joy without nauseating excess and poor example. 

It has been enough fun for all of us, in fact, that there will be tutorials to follow.  Maybe they can help someone out there throw a fun and inexpensive party for their kids that everyone can enjoy since really, that is what it should be all about.


Monday, April 2, 2012

Here we go again...

I was amazed at how many people read my post on Eosinophilic Esophagitis (EoE) and our journey through the diagnosis and treatment of the disease with our oldest daughter, Cassidy.  The post, which you can read here, gave a very abbreviated version of the story, but I think the basics were covered as clearly as possible.  It was a hard road, and still is, and it certainly altered our lives.  Shortly after Cassidy was diagnosed in June 2011, we started to see some concerning signs in Cassidy's little sister, Chloe.

 I should first explain that Chloe has always had a rough time in some ways.  She is by far the most easy going of the 4 kids, and like all 4 kids, she has always met or exceeded her developmental milestones and that sort of thing.  We are thankful for that.  But Chloe has been through plenty.  She had severe newborn jaundice, and was admitted to the children's hospital when she was 5 days old for a couple of days when it reached a dangerous point, but she recovered quickly, well and fully.  By the time she was 5 months old, she had eczema so severe and spreading so quickly that the pediatrician had already sent us to a dermatologist, who had in turn already sent us to a pediatric specialist because he ran out of options that he felt comfortable with for an infant that young.  For 2 years, she saw the head of the Allergy and Immunology department at AI DuPont Children's Hospital every 2 to 3 months. For the first year of that process, it was a struggle just to keep things from getting worse.  We tried everything.  I went on a 5 food elimination diet while nursing twins (not eliminating 5 foods, I could only EAT 5 foods), we bathed her in distilled water, she had a rotation schedule for her medications for the eczema, which at times was open or scabbed skin that covered almost 2/3 of her body. That meant that she was prone to bacterial infections, which had to be treated with topical or oral antibiotics (usually topical) which then caused fungal infections.  It was no joy ride, that's for sure.  By the time she was 2 and a half, we had her skin pretty well controlled.  It was just before that when she started complaining of "owies in her head".  So, at 2 and a half, she was diagnosed with classic migraine headaches.  They run in the family, with juvenile onset even, but not at 2 and a half.  She still has migraines and eczema, and has had an increasing record of poor weight gain and low grade fevers.  She also went through an extended period of frequent vomiting. As we learned more about eosinophilic disease with Cassidy and struggled to get her health under control, we saw Chloe start to go down hill rapidly as well.

When Chloe started complaining of chest pain (Cassidy's biggest symptom), I took her to the pediatrician to get a referral to the same specialist that Cassidy sees, Dr. A. At that visit, we learned that while she has gotten taller, she has not gained any weight for a year and a half.  The regular doctor referred her over immediately, and before we even reached the first appointment with Dr. A, she started to have episodes of dysphagia, which means trouble swallowing or, in her case, food getting stuck in the esophagus.  Dr. A moved her into an urgent slot and saw her immediately.  Within a few weeks, he had her in the O.R. for scopes and biopsies.  I started this post in the surgical waiting room at AI DuPont, while Chloe was having her upper endoscopy, colonoscopy and biopsies. She did pretty well with the procedures, and now we are waiting for the lab results so we know exactly what we are dealing with.  I have seen a huge show of support from friends and family, which we all deeply appreciate.

Assuming that Chloe's diagnosis of an eosinophilic disease is confirmed with the biopsies, which is highly likely, we can only hope that it is no more severe than Cassidy's, that it is confined to the esophagus which is much easier and safer to treat, and that her list of forbidden foods is at least partially the same as Cassidy's. In order to have a diagnosis of EoE, biopsy results must show at least 15 eosinophils in at least 2 high power fields in biopsies of the esophagus.  Cassidy's biopsies showed 50-60 eosinophils per high power field in each of 11 different biopsies taken of her esophagus. How Chloe's numbers compare to those remains to be seen, but we should have at least some answers from the lab by the end of this week.

I will be sure to post updates here on the blog for friends and family members, or concerned readers.  Please leave me a comment or send me a message if you have any thoughts, questions, or words of support.

For more information about eosinophilic diseases, please visit www.apfed.org.