Guilty and guilt-free treats

When Bryan was first diagnosed with his food allergies, we decided that it would be best to eliminate peanuts from our household. (We considered eliminating eggs and milk as well, but ended up not doing so. More thoughts on that in a later post...) In general, it hasn't been that difficult. While my husband and I like peanut butter, but it's not one of our must-have foods. In general, I certainly don't feel like I am missing out on anything- except at this time of the year. The one thing that I do miss are Reese's peanut butter eggs. (I don't care about the peanut butter cups- for some reason, it's just the eggs that I crave.) And I kind of feel guilty about wanting them, even if I'm not going to actually buy or eat them- like I'm somehow being disloyal to Bryan. Are there any other parents out there who feel the same way?

Anyway, while I have to do without the peanut butter eggs, I decided to try to make a different Easter treat for Bryan. I actually found a recipe for milk-and-egg-free "Cadbury" creme eggs. (That's right- I made egg-free eggs.) To be honest, I'm not sure if Bryan will actually eat them (although they ARE pure sugar- how can he not like them?). But at least I can say that I actually made them!

...And a little bit of rambling

While I'm very excited about the news about the peanut allergy study I mentioned in the previous post, I'm also a little unsettled. This treatment completely goes against the current medical advice for food allergies, which is strict avoidance. It's just such a shift in thinking, and it obviously shows promise, but I can't begin to imagine the fear that must have gone through the heart of each parent of each participant in the study the first time the treatment was administered. Some of the participants did have to drop out of the study because they couldn't tolerate the treatment. It was a small number, but it happened nonetheless. If this does end up being developed into a widely-available treatment, will I be brave enough to enroll Bryan?

And there is also a part of me, a very selfish part of me, that is worried about what to say when I talk with people about the study. I want to share this news with everyone who knows what we have been through with Bryan. But then I think about explaining the details of the peanut treatment, which involved dosages of actual peanut protein. And I begin to worry that certain people will point out to me that it is the opposite of our current strict avoidance, and that maybe we have been doing more harm than good. (I have actually had people mention in the past that I should relax with Bryan's food because a little bit of exposure might help him build up a tolerance.) Or that other people might take the study to mean that we don't need to be as stringent with food preparation, so they don't need to read a label quite as carefully here or there.

I know that I'm being ridiculous, really. I know that I can explain that the peanut dosage was very strict- only 1/1000 of a peanut initially, and very gradually increasing over the course of the study, which has been in progress for several years. I know I can explain that everything was administered under strict medical supervision, just in case an allergic reaction did develop. I know that I can explain that there is no way to determine the exact amount of a "trace" of peanut in any particular box of cookies- one cookie could have the equivalent of 1/100 of a peanut while another has 1/5 of a peanut. I know I can explain that this only applies to peanut allergy, and that milk and egg allergies may work via a different mechanism. And I know I can explain that this study hasn't even been published yet, and that it is going to be very thoroughly reviewed and critiqued once it is. I know logically that anyone who really matters will understand all of this, and continue to support us and not question as I continue to obsessively read labels and wash cutting boards. But I still worry, because that's just the way I am.

Promising developments about peanut allergies...

This past weekend, the American Academy of Allergy, Asthma, and Immunology (AAAAI) held their annual meeting in Washington DC. At this meeting, Dr. Wesley Burks (a huge name in the food allergy field) presented some preliminary findings from an ongoing study he is conducting at Duke University and Arkansas Children's Hospital. In this study, 33 participants with a known peanut allergy received daily treatments of peanut protein, starting with the equivalent of 1/1000 of a peanut, and gradually increasing in dosage to the equivalent of 15 peanuts per day. Today, most of the children are now able to tolerate peanuts (in both the treatments and in everyday life) without developing an allergic reaction! (You can read more about the study in the New York Times or view a report that appeared on Good Morning America.) According to Dr. Burks, they may even be able to develop a treatment for peanut allergy within the next 2-3 years.

This is HUGE news for people with food allergies, but a few words of caution first:

• DO NOT TRY THIS AT HOME! The participants received a very precise dosage in a controlled medical setting, with lots of doctors and medical equipment present in case of a reaction. The dosage was very gradually increased, again by a very precise amount. Four participants actually had to drop out because they weren't able to tolerate the treatment. While it is all very promising, Dr. Burks himself says that more studies need to be completed before the treatment can be used outside of the study setting.
• So far, the treatment only applies to peanut allergy. There is another study that is investigating a similar treatment with egg allergy, but the mechanisms for how each food allergy works may be different. What is effective for peanut allergy may not apply to other food allergies.
• These are all preliminary results. The study has not been published yet, and once it has, it will be subject to a huge amount of peer review and follow-up studies and criticisms.

All of that said, this is definitely exciting news! I am trying to get as much information about the study as I can- I will try to keep you updated with new developments as I hear about them...

Is there cream in cream of tartar?

If you are new to the food allergy world, you are probably learning that there are a whole slew of "code words" for allergens- derivatives or different forms of the allergen that still pose a danger. Milk, for instance, can be found in the form of casein, hydrolysates, lactose, whey, and many others. Eggs can be found as albumin, globulin, and ovomucin, and peanuts may be present in mixed nuts and hydrolyzed vegetable protein. These are just a VERY few of the possibilities. Luckily, the FDA now requires that labels for foods produced in the US provide the "plain language" terminology- meaning that if casein is an ingredient, the label can list casein, but must also say MILK. (This does not apply to foods that are imported, however- so if you do purchase a lot of international products, you probably need to have the code words memorized.)

However... is there actual cream in cream of tartar? There are lots of foods and products that have names that sound like they might contain an allergen- but do they? Below is a short list of items that SOUND like they might contain milk, eggs, peanuts, or tree nuts, but are in fact completely unrelated- and therefore Bryan-safe. As always, read the label to be sure there aren't any other potential allergens!

• Cocoa butter
  
• Coconut milk
  
• Cream of tartar
• Calcium/potassium/sodium lactate- sounds like lactose and other milk-derived substances, but lactate is actually safe for those with milk allergies
  
• Milk of magnesia
• Nutmeg
  
• Shea butter
  
• Water chestnuts
  

Out of the bubble

Bryan started preschool today! It took a few months longer than expected, but I was finally able to meet with his newly-hired lead teacher last week. We had a long discussion, I was able to explain to her my concerns, and I think that she really seemed to get it. She asked a lot of questions as well, which was very reassuring to me. I think- HOPE- that this will work out, because I really do want to like this school!

(In case you were wondering how Bryan handled it, he was great. When we got to his classroom, he took off his coat and backpack, handed them to me, and said, "It's okay Mommy, you can go now." And so it begins...)

One quick word of advice for any parent whose child needs an Epi-Pen: SAVE THE ORIGINAL PACKAGING. The school will probably need it, as well as the prescription and dosage information, in order to legally administer it.

Still no preschool

It has been 4 months since we enrolled Bryan in preschool, and he still hasn't started yet. It has been a little frustrating, actually, but it's mostly my decision. As I mentioned in a previous post, I had planned to meet with the teacher in advance, so that I could make sure that we were both on the same page concerning his food allergies. Well, his classroom does not have a lead teacher yet. They do have an assistant teacher who is with them every day, but not an official lead teacher. Back in September, I had planned to wait until the lead teacher was hired since we weren't really in a hurry to start. While I could meet with the assistant ahead of time, I really wanted to make sure that I met with everyone before they were in a classroom with Bryan. I thought it would just be easier to wait, rather than try to squeeze in another meeting between when the lead started and when Bryan was in with her. Anyway, that was back in September. I'm starting to wonder if I should just go ahead and meet with the assistant. On the one hand, I'm sure she is perfectly capable of managing the classroom, and she would be in with Bryan once the lead teacher started anyway. On the other hand, I REALLY wanted to meet with the lead teacher first, mostly for my own reassurance that this is the right place for Bryan. Meeting with the lead teacher before Bryan started in her classroom was one of the things that I had not planned to compromise regarding his safety. So is it really worth the compromise now?

I did call a few other preschools to get a feel for what else is out there, just in case this one does not work out. However, I met a frustrating amount of resistance. In one particular case, the director first told me that she has a rotating menu, but that it would take some work to find the lists of ingredients for individual meals. When I asked her if I would be able to provide Bryan's food if she wasn't able to find the ingredient lists, she told me that learning to eat outside of the home was a big part of the child's social development, and that it was too important of an experience for her to allow that. I was completely taken off-guard! While I understand her point, this is more of a safety issue than a picky-eater issue. I would love to be able to send Bryan somewhere and just have him sit down and eat whatever everyone else is having. But I can't. HE can't. And I was extremely disappointed that she didn't seem to understand that.

So as it stands, we're still up in the air. Maybe we'll start soccer lessons instead...

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!