On the shelf

I'm not usually one for e-mail forwards, and I'm still relatively new to the blog world, so when I was "tagged" by my friend Eddy for this game, my first thought was "Hmmmmmm... How can I politely ignore this?" However, I decided to humor him and at least look at what my answers would be to the task. Interestingly enough, it actually dovetailed quite nicely with my purpose for this blog. So here you go, Eddy- and thank you for inspiring this post!

Here is the task:
Go to your nearest bookshelf. On the top shelf (or highest shelf with books) what book is fifth from the right and why did you love it? Now go to the bottom shelf (or lowest shelf with books). Tell us about the fifth book from the left. Then tag five of your blog buddies - link please! - to do the same. Be sure to link to the person who tagged you too.

Top Shelf:

Our computer is in the kitchen, so the closest bookshelf holds my cookbooks and other food-related reference books. On the top shelf, 5th from the right, is my copy of The Parent's Guide to Food Allergies by Marianne S. Barber. This book has been an amazing resource for us. We bought it right after Bryan was diagnosed with his food allergies, and I think I read it cover to cover in less than 2 days. Great information for anyone who needs to learn about food allergies. The first section, Food, is basically Food Allergies 101. It covers the basics of a reaction, symptoms, testing, nutritional concerns, and goes into detail about each of the 8 major food allergens, including "code words" and special concerns for each allergen. It even has a few recipes! Section 2 is called Coping, and provides great information about living in the "real world"- preparing for holidays, advice about school and traveling, and the emotional concerns that food-allergic children and parents may face. Section 3, Itching, Sneezing, and Wheezing, covers the related medical problems that may arise with food allergies- asthma, eczema, and environmental allergies. Overall, this is a fantastic resource for parents (or relatives, or friends) of food-allergic children. I HIGHLY recommend it- it helped me so much when we first learned about Bryan's food allergies, and I still refer to it on a pretty regular basis.

Bottom Shelf:

Fifth from the left is my copy of Rachael Ray's Express Lane Meals. While not quite as relevant to the food allergy world as the previous book, I actually would recommend it as well. Full disclosure- I am admittedly a Rachael Ray fanatic. However, this book has a lot of recipes that are already milk-, egg-, and peanut-free, and I have found that many of the other recipes can easily be adapted as well (omit the egg, or replace the butter with olive oil). Even if you aren't a Rachael Ray fan, I really think this is a great cookbook with lots of really good, easy-to-prepare recipes.

So there's a little insight into my bookshelf. And thanks again to Eddy for helping me write this post!

There's No Place Like Home for the Holidays...

...which means you have to be particularly careful with your food-allergic child. And while you may have super-accommodating relatives who are more than willing to prepare allergen-free foods for your child, there are so many hidden sources of allergens to be aware of. The stuffing, for instance. Prepared without butter, sure- but what about the prepackaged bread cubes that went into the stuffing? And the turkey. Again, no milk or eggs were added, but some turkeys come pre-basted with butter. In any case, it's important that someone- whether it is you or the relative who prepares the food- check every ingredient along the way before allowing your child to try the dish.

I have been lucky enough to be able to generally oversee Thanksgiving dinner prep with my family (our dinners tend to be smaller, with maybe 8-10 people), so I know exactly what Bryan can and cannot have. However, I know that some Thanksgiving dinners are huge family potlucks with dozens of relatives and tables full of delicious, but most likely allergen-full, dishes. In this scenario, I would recommend contacting your host well in advance, explaining your situation, and offering to bring 1-2 things that you know your child will be able to eat. That way, no one else has to worry about keeping their food prep allergen-free, and you know that your child will have at least one thing he or she can have. You may also want to make special arrangements for your allergen-free dishes so that you can make sure there isn't any cross-contamination with other dishes.

Then there's the issue of dealing with relatives who don't have day-to-day contact with your food-allergic child, and therefore may not be aware of the issues that he or she faces. Well, that's kind of a personal preference. When Bryan was first diagnosed, we were very hypervigilant. Whenever we got together with anyone involving food, we would tell them about Bryan's allergies (even though he was eating his own food), and ask them to be very careful about washing hands and everything. Over time, I have become a little more relaxed (I know, it doesn't seem like it- but I really have!). I'm adopting more of a wait-and-see approach. I do watch over Bryan very carefully, and he does know to ask me before he eats something. And I still check labels and ingredients every time we give something to him. But I'm trying not to send out the blanket warning. If someone asks if Bryan can have something (just one bite of ice cream?), THEN I jump into teaching mode. But at this point, I'm trying to figure out how to balance informing people about his food allergies without stigmatizing him. I think it will get easier when I know I can trust Bryan to advocate for himself (and to not be tempted to try something yummy-looking!) But until then, it's a work-in-progress...

Hope that everyone has a fun, safe, and happy Thanksgiving!

Tricks and Treats

Since Bryan is only 3 years old, we haven't had any discussions yet about why we don't go trick-or-treating. My plan is to tell him that it just isn't safe because so many people give out candy with milk or eggs or peanuts in it. For now, he gets to dress up and give away (Bryan-safe) candy at the door, and when he gets older, we will probably throw Halloween parties for him and his friends. Am I being naive to think that will work? Probably- but he has surprised me so far with how mature he is about his allergies. So here's hoping...

In the meantime, here is a list of milk-, egg-, and peanut-free treats. As always, please check the label before you eat anything- fun-size products sometimes have different ingredients from regular-size. Hope you have a fun, safe, and allergic-reaction-free Halloween!

• Skittles
• Starburst (except fruit-and-creme variety)
• Sour Patch Kids (just the regular ones)
• Divvies Caramel Popcorn or Caramel-Chocolate Popcorn (available at http://www.divvies.com/; they also have Bryan-safe chocolate!)
• Raisins (which the neighborhood kids will LOVE...)
  

Surprisingly Bryan-Safe

As much as I would love to say that I carefully and lovingly prepare every morsel of food that my entire family eats, I am definitely a member of the Convenience Food Fan Club. Now, convenience foods are definitely more of a challenge for the food-allergic child. Beyond the simple fact that milk, eggs, and/or peanuts are used in a lot of basic cooking (cookies, cakes, breads, pastas and sauces, etc.), you also have to worry about cross-contamination. Just how carefully did they clean those machines between the peanut-butter crackers and the regular crackers? And while food labels have gotten much easier to read (all food products manufactured in the US are now required to use the "simple" words for allergens somewhere on the package), there isn't a lot of consistency as far as what "Manufactured on equipment that also processes..." versus "Manufactured in a plant that also processes..." means.

That said, I have managed to find a number of convenience foods that are, in fact, Bryan-safe. In this case, I am not referring to the wonderful specialty items that are designed specifically to be milk-, egg-, and peanut-free. (Thank you Divvies Bakery!) I'm talking about regular snack foods that you find at the grocery store. Pretzels are generally safe, as well as saltine crackers. The list below, however, has foods that are "Surprisingly Bryan-Safe"- you don't expect them to be safe because, well, they taste too good. =) Based on e-mails and conversations with the manufacturers, I have found that Pillsbury, Kraft, and Nabisco are very good about their labeling procedures. As always, please check ingredient labels before eating- manufacturers do change their formulas from time to time!

• Frosted Strawberry (and Blueberry and Cherry) Pop-Tarts
• Barnum's Animal Crackers
• Honey-Maid Graham Crackers
• Oreo Thin Crisps (100 Calorie Packs)
• Lorna Doone Shortbread (Cookies and 100 Calorie Packs)
• Cinnamon and/or Honey Teddy Grahams
• Ritz Crackers (that's right, I said Ritz Crackers)
• Wheat Thins
• Pillsbury Reduced Fat Crescent Rolls (the kind from the can)
• Pillsbury French Bread (again, from a can)
• Pillsbury Refrigerated Pie Crusts
• Kraft Jet-Puffed Marshmallows (NOT Creme)
• Bisquick mix (of course, use soymilk and/or other substitutes in recipes!)

Happy eating!

An unwanted anniversary

It was 3 years ago today that Bryan had his first (and hopefully, only) anaphylactic reaction. I certainly don't want to or try to re-live the experience, but seeing this date on the calendar makes everything rush back. (I'm not going to recount it here, though- I already did that in a previous post.) I suspect it will always be kind of an "unwanted anniversary" for me- very important in my life, even though I wish it hadn't happened. Luckily, Bryan was young enough that he probably won't remember what the reaction felt like. And I would be perfectly happy if he could go through life without ever having to find that out.

Pre-School Prep School

We decided that it was time to let Bryan out of his little bubble this fall and start Pre-School. Sort of like with the airlines, I did a LOT of research before making our decision. First, I narrowed it down to schools/centers that were accredited by the National Association for the Education of Young Children (NAEYC). My reasoning for this was twofold. First, NAEYC accreditation is an indicator of high quality among early childhood centers. The voluntary accreditation process is fairly rigorous. They look at many different factors, from curriculum to communication with families, from the physical environment to staff preparation. As a former early childhood teacher, I put NAEYC accreditation high on my priority list. Additionally, I reasoned that because the accreditation process is so meticulous, if a center were willing to go through the accreditation process and maintain those high standards, hopefully that would indicate they would be committed to working with us on Bryan's food allergies.

After I narrowed down the list of centers, I spent a lot of time on the phone. I spoke with the director of each center, first discussing the severity of Bryan's allergies, then covering their policies and procedures for working with children with food allergies. Among the topics I asked about were:

• Previous experience working with food-allergic children
• Food preparation (some centers provide food; others require children to bring their lunches) and mealtime procedures (where would he sit, how closely would he be supervised)
• Medical procedures, including where an Epi-Pen and/or Benadryl would be kept, who would administer it, what training teachers and staff had, emergency procedures, and what kind of discretion teachers had to administer medication on an "as needed" basis

After my marathon telephone sessions were done, I ended up with one center that seemed to be a good fit. I made an appointment to tour the center and meet the director. During the tour, we discussed much of the same information that we had covered over the phone, but this time I was able to see everything in person. It also allowed me to start establishing the relationship with the staff that will be a big component of keeping Bryan safe at school. After the visit, my husband and I talked about everything for several days, and we finally decided that this school would be a good option for Bryan. We went ahead and enrolled him to start in the middle of September.

Note to parents of food-allergic children- In addition to the usual medical forms that needed to be completed by the pediatrician, I asked our allergist for a Food Allergy Action Plan. This form has a complete list of Bryan's food allergies, as well as the steps that should be taken if a reaction were to occur. Ours describes each of the possible symptoms of a reaction, and indicates whether Benadryl or Epi-Pen should be administered. I will try to scan ours and post it so that you can see an example.

I still plan to meet with Bryan's teacher in person before he starts (she wasn't there when I visited). Otherwise, I think that we are prepared to take this next big step. Now whether or not I'm actually READY is a completely different question...

(Allergy) Test Review Session

The two basic types of allergy tests out there- skin prick tests, and blood tests. For the skin prick test, a small scratch is made on the skin, and is then exposed to the allergen in question. If the person is allergic, the scratch will then swell, sort of like a mosquito bite. The main test that our allergist conducts at this point is the blood test, which in our case is the CAP-RAST. Blood is drawn, and the levels of IgE antibodies for various allergens are measured. As I mentioned in the previous post, the IgE antibody level does not indicate "how" allergic the patient is to the allergen- it just indicates how likely it is that the patient is allergic. The "cutoff" level of IgE antibody that determines whether or not you are allergic varies with the allergen. For instance: for eggs, an IgE antibody level of 7 kilo-units per liter (kU/L) indicates a high probability of allergic reaction (95% of patients with this IgE antibody level for eggs will have a reaction). The "cutoff" level for milk, however, is 15 kU/L, and for peanuts is 14 kU/L. This doesn't mean that a patient with an IgE antibody level below these threshholds is not allergic- unfortunately, a reaction can occur pretty much any time the IgE antibody level is higher than zero. On the other hand, a positive test result doesn't guarantee that an allergic reaction will occur either. It just means that the possibility for a reaction is there. So basically, allergy testing can help you determine what foods might cause a reaction (that you therefore should avoid, just in case), but can't determine whether the reaction will actually occur or how severe that reaction could be. (Confused yet? This is why you should always talk to your doctor if you have concerns!)

So on to Bryan's test results. His IgE antibody levels are still extremely elevated for milk, eggs, and peanuts (>100 kU/L for each). They are also slightly elevated for almonds, cashews, hazelnuts, and sesame. Our game plan is to continue avoiding milk, eggs, peanuts, tree nuts, shellfish (as a precaution), and sesame, and re-test in about 12 months. And we'll continue the process until his IgE antibody levels drop low enough that it might appear that he has "outgrown" an allergy or two. At that point, we will look at skin testing, and if those come back negative, it will be time to consider the oral food challenge. But more on that later.

Check back with me in 12 months...

A question I get a lot from well-meaning friends and relatives is “How are Bryan’s food allergies doing- are they getting any better?” It’s a question that I find considerate and frustrating at the same time. Considerate because it’s nice that they are concerned for Bryan’s health. Frustrating because I really can’t answer the question very well. Food allergies unfortunately aren’t something that you can see day-to-day (or even month-to-month) improvement on. Since we very strictly avoid all of his allergens (as well as a few others for good measure), just because he hasn’t had a reaction in the last few months doesn’t necessarily mean his condition is improving- it just means that he hasn’t had any eggs, milk, or peanuts in that time. The only way we can tell for sure how his allergies are doing is through testing, and we only see his allergist every 12 months. And even then, tests can’t necessarily tell us “how” allergic he is (how severe his reactions could be)- they just tell us how likely he is to be allergic to the various allergens.

All of that to say- Bryan had an appointment with his allergist yesterday. He is still allergic to milk, eggs, and peanuts. (See the next post for more details.) Check back with me in 12 months...

Leaving on a jet plane

We just completed another food allergy milestone- our first plane flight. While the planning was somewhat stressful (my fear of the unknown more than anything else), the flight itself went really smoothly. We did stay with family, so we didn't have to worry about the "eating out" aspect of vacationing that is a bigger concern for most food-allergic families. However, here are some things that might be helpful to other parents trying to plan their first flight for a food-allergic child:

• We contacted three airlines- Frontier, Southwest, and United. Frontier unfortunately was unable to accommodate our concerns, as they have recently begun selling peanut-containing snacks on their flights. Southwest said they would make an announcement prior to the flight to ask passengers to voluntarily refrain from peanuts, and they would not serve peanuts within a "buffer zone" of 2-3 rows. They also requested that we fly the first flight of the day, as all planes are cleaned overnight. United said that they do not serve any peanut-containing snacks, but that they couldn't guarantee a peanut-free flight, as passengers are allowed to bring whatever they wish on board. United was the best option for us, all things considered. (None of the airlines were able to make any accommodations for the milk or egg allergies, which we weren't really expecting anyway.) However, always contact the airlines yourself, just in case their policies change.


• When you make your plans, always contact customer service, either to make the reservation with an agent, or afterwards to inform them of the food allergy. Even if it doesn't affect their food service plans, you will want them to make a note of the allergy on your reservation.


• Bring your own snacks for on the plane! This is really the only way you know for sure that what your child eats is safe.


• Carry your EpiPen with you. You are allowed to bring it on board, as long as you declare it with security. I put it in the security bin, separate from my "3-1-1" bag, and informed the security agent that I was carrying it. Make sure that you have the prescription information, including the patient's name and doctor's name. You may also do this with liquid Benadryl or other medications you may need to bring- just be sure to declare it separately from your "3-1-1" bag. I also got a letter from our allergist stating that Bryan has food allergies and that we needed to carry the EpiPen on board with us, just to be sure.


• Carry disinfecting wipes- we had some for cleaning surfaces, as well as hand wipes. We wiped down the seat belts, as well as the trays, as soon as we got to our seats.

Some helpful websites for making travel plans with food allergies include:

Food Allergy and Anaphylaxis Network- http://www.foodallergy.org/Advocacy/airlines.html
Transportation Security Administration- http://www.tsa.gov/travelers/airtravel/specialneeds/

Lessons learned

Bryan’s most recent reaction occurred the first weekend in May, during a visit to Dallas. I had gone out to lunch with my sister-in-law, leaving Bryan with his grandparents. They gave him lunch and put him down for a nap. When I got back, though, he was still awake- and saying that he needed help because he was itchy. His grandfather went to check on him, but he called me to come take a closer look. Bryan's face, arms, and torso were covered in hives. He was sneezing too, but he didn’t seem to be having trouble breathing, so I decided to start with Benadryl and move up to the Epi-Pen if necessary. I sat with him, trying to keep him calm because he was definitely scared, and trying not to let him see how scared I was. However, the hives finally began to subside, at which point it was time to figure out exactly what had happened.

I asked what he had had for lunch, and Bryan's grandparents told me that he had the same chicken nuggets and fries that they always had, but that after lunch, they had made cookies from a cookie mix I had told them about and margarine that I had looked at the previous night- so they didn't understand why the reaction had happened. (Note- even if something is "safe", I check labels each time since companies often change their formulas.) I looked at both packages, and they looked fine, so I mentioned that it was possible they had been mislabeled. I asked again about lunch, but grandmother insisted that it was what they always had, and that I had previously said were safe. I pulled the bags from the freezer and looked at them, and sure enough- it was a different type of chicken nugget from what I had recommended, and EGG was listed on the package, both under the ingredient list and the allergen statement.

The experience was frustrating, to be sure. But I feel that it was also a blessing in some ways. First, the reaction could have been much worse. This was pretty minor compared to Bryan's first milk reaction. But it did give both grandparents a chance to see why it is so important to be as cautious as we are when it comes to Bryan's food. They have been very supportive, of course, but I don't know if they had quite grasped the seriousness of his allergies until they saw it firsthand. It was a good lesson in why it is so important to look at all labels EVERY SINGLE TIME. It also allowed Bryan to understand what an allergic reaction feels like, so that he can identify it. I was proud of him, actually- he did tell his grandfather that he wanted his Epi-Pen, so maybe he is starting to understand his food allergies a little more.

It also helped me realize that I need to stop feeling self-conscious about being hypervigilant over Bryan's food. I often worry about seeming too pushy when it comes to his allergies. (I had felt guilty about looking at the margarine the previous night because I didn't want grandmother to think I was "checking up on her".) It's something that I struggle with on a regular basis- I just don't want to come across as overbearing or obsessive. But really, I need to stop thinking about myself- because it's not about me. It's about Bryan and keeping him safe. And his safety is so much more important than what other people may or may not think about me. Now, I'm not saying that I plan to put Bryan in that bubble I mentioned before (although it certainly was tempting after this happened...) But it is important to remember to keep a little perspective. =)

To test or not to test

Claudia has entered the world of solid foods now, and she is coming up on the age that Bryan was when he was first diagnosed with his food allergies. She is also experiencing some of the same growth problems that Bryan had. Her pediatrician has ordered some tests, and we are going to go see a GI specialist next month. My worry is that the GI doctor will recommend that we supplement her diet with formula. (Fateful words in my experience.) Soooooo... what do we do? Do we start her on regular formula or go straight to soy? And what happens as she gets older, and it's time to move beyond strained green beans and rice cereal? Do we introduce foods that may contain eggs or milk? Or do we put her on the Bryan-safe diet as well?

Most of the recent research indicates little evidence for higher occurence of milk or egg allergy among siblings (there does, however, appear to be a higher occurrence of peanut allergy). And Claudia hasn't had some of the other signs of food allergies that Bryan exhibited (no eczema, no random hives). However, I'm leaning towards keeping the Bryan-safe diet through her first birthday, then asking to have her tested for the "Big 8"- milk, eggs, peanuts, tree nuts, wheat, soy, fish, and shellfish. (These 8 allergens account for 90% of all allergic reactions.) I don't want to be the pushy mother, but I also don't want to go to the emergency room if I can avoid it.

So what do I do? I guess I have about 6 months to try to decide...

Learning the hard way

We found out about Bryan’s food allergies through a trip to the emergency room. Bryan has always been on the small side (which is no surprise, if you have ever met me or my husband). However, his growth slowed down dramatically between 4 and 7 months. At a 7 month weight check, his pediatrician recommended that we try supplementing his diet with some formula. So I went to the store, got the formula that she recommended, and sat down after his late afternoon feeding with a small bottle.

The reaction began immediately. First, he started rubbing his eyes and sneezing. Within the next few seconds, his lips started swelling and huge hives appeared on his face and began to spread across his entire body. Then he began to choke as his throat started to close up. I grabbed the Bendadryl from the medicine cabinet and tried to give him a dose, but by then his throat had swollen up so much that he couldn’t swallow any of it. I called his pediatrician’s office, got the answering service, and decided that if anything warranted a trip to the emergency room, this was it. I put Bryan in his car seat as quickly as I could and took off.

The closest emergency room was thankfully only 5 minutes away from my house, but those were the longest 5 minutes of my life. I remember begging the lights to stay green, feeling completely helpless as I heard the little baby in the backseat trying to cry, but only managing a little gurgle because his throat and tongue were so swollen. By the time I got to the hospital, his entire body was swollen and red, and he had started vomiting.

I filled out the intake information as I held Bryan, trying to comfort him at the same time. We were ushered in right away, thankfully. I lay Bryan down on the bed and tried to hold his hand and keep eye contact with him as the nurse and doctor took over. The doctor took one look at Bryan and asked, “What did he get into?” I explained what had happened, showed the doctor the package of formula that we had used, and he told me that Bryan likely had suffered a severe allergic reaction, called anaphylaxis, to the milk protein in the formula. Bryan got doses of 2 different medicines- to be honest, I’m not even sure what they were, but they worked, and Bryan's condition started to stabilize. The doctor ordered a third medication (a steroid this time, I think), just to be sure.

We were at the hospital for the next 4 hours, as the doctor wanted to keep Bryan under observation in case a second reaction (called a biphasic reaction, and not uncommon in serious reactions) occurred. My husband rushed to the hospital as soon as I was able to get a hold of him. We sat there together watching Bryan (who was still very red and puffy). He slept a little, crawled around on the bed a little. When we finally were discharged, we were all exhausted. We set up Bryan’s portable crib in our room (there was no way I was going to leave him alone overnight), and I basically sat up all night, checking on him every 30 minutes. Even though I knew there was no way we could have guessed this was going to happen, I still felt horribly guilty- because after all, I was the one who caused this by giving him the formula in the first place.

We followed up with Bryan's pediatrician the next day, who referred us to an allergist. We had some testing done, and found out that Bryan was highly allergic to milk, eggs, and peanuts. Our allergist also recommended that we join the Food Allergy and Anaphylaxis Network (FAAN), which has been a great resource. It was a huge learning curve at first, and I know that we have many more challenges ahead of us (hello, preschool!) But I think we have settled into a good rhythm for now, and I have generally given up the idea of keeping Bryan in a big plastic bubble for the rest of his life. But I haven't completely ruled it out. =)

Our little corner of the world

Hello, and welcome to our little corner of the world. For those of you who don't know me, I am a mother of two children- Bryan, who is 3 years old, and Claudia, who is 6 months old. Bryan was diagnosed with severe allergies to milk, eggs, and peanuts when he was 7 months old. And so we began our journey into this confusing world of Epi-pens, label-reading, and CAP-RASTs.

The purpose of this blog is two-fold. First, I wanted a way to keep family and friends up-to-date on Bryan’s allergy situation. People often ask me how his allergies are doing, whether or not we have seen any improvement. There are also times that we have setbacks, and I would like to have a way to tell people what has happened without having to relive the experience 20 different times. Second, I wanted a way to share some of what I have learned about food allergies with other parents. There is a lot of great information out there about the technical side of things- how the immunological response occurs, current medical research and legislation. However, there is also a very personal side to the story- the day-to-day aspects of life, the successes, and the fears. This blog is my way of sharing both of those sides- information and ideas, as well as thoughts (and ramblings) about my family's experiences. Raising kids with food allergies can be overwhelming sometimes- my hope is that through this blog, parents in similar situations will know that they are not alone.