The scariest time of the year

I was talking to Grandmama the other day, and mentioned that we might be going to Dallas to visit on Halloween this year. (We don't get a lot of trick-or-treaters here, and since it's on a Saturday, we thought it might be fun to visit Grandparents so they could see the kids in their costumes.) Right away, Grandmama started talking about how much fun it would be to take Bryan and Claudia trick-or-treating with their cousins Hannah and Zander, who always come over to trick-or-treat in their neighborhood.

The problem? I don't want Bryan to go.

Full disclosure- I am a little bit of a Halloween Grinch. Halloween has never been a big deal for me. I was pretty shy growing up, and I don't like asking people for things anyway, so trick-or-treating didn't hold a big appeal. So far, Bryan hasn't expressed any interest in going trick-or-treating, and he has enjoyed handing out candy for the past 2 years in a row- he actually already asked me about it for this year. My thought was that if we go to Grandparents' house, he would be able to hand out candy there. However, Grandmama is SO excited about having the cousins trick-or-treat together. I did tell her that I didn't know if trick-or-treating would be a good idea, but she began making plans to talk to her neighbors ahead of time to warn them of Bryan's food allergies. I know that my husband's family really got into Halloween every year, so she just wants to make sure that Bryan doesn't miss out on something that was so much fun for them.

I'm definitely thankful that Grandmama is thinking ahead on this, but there's so much more involved than just warning neighbors ahead of time. Neighbors who don't have any experience with food allergies won't know what to look for on a food label, and there are other issues as well. If I do let Bryan go trick-or-treating, I am going to want to:

• Talk to every single neighbor myself
  
• Bring some Bryan-safe candy to each house ahead of time
• Ask each person to make sure to keep the Bryan-safe candy separate from any other candy they might have to reduce the risk of cross-contamination
  
• Make sure they know who to look for to give the safe candy to
  
• Ask them to share this info with anyone in the house who might open the door

And that is a LOT to ask for from someone you don't know (particularly for someone who, as I mentioned earlier, doesn't like to ask people for things!) However, if I am being completely honest, there is a part of me that doesn't want to do this because I worry about what happens next. Suppose Bryan does go trick-or-treating this year. Next year when we're at home, do we do the same thing with all of our neighbors? And every year after that? If Bryan is perfectly happy handing out candy now, why change a good thing?

Am I letting my Halloween Grinch get in the way here? Since we have this opportunity, shouldn't I just let my kids enjoy being kids (and let their grandparents enjoy it as well)? Am I being unfair to Claudia by holding her back from this experience? Are they both going to look back on this someday and say that my denying their trick-or-treating effectively ruined their childhoods?

Wow, Halloween really CAN be the scariest time of the year...

Some good news and not-exactly-good news

Good news first- we found a new preschool for Bryan! We spent a few frustrating weeks calling and visiting preschools, none of which seemed to really understand our food allergy concerns. However, we finally found one that I was really excited about. First, they have experience dealing with food allergies- not only have they had other children with similar allergies in the past, his current class actually has another child with a nut allergy. When we went to visit, the director and the teacher asked all the "right" questions about Bryan's allergies and potential reactions, and I felt like they went out of their way to make sure I would feel comfortable leaving him in their care. They even invited me back to the kitchen to read all of the labels on the snacks that they served- which I REALLY appreciated. I kind of knew that for the most part, the snacks would not actually be safe (Goldfish crackers, Nilla wafers), but the fact that they gave me the opportunity to check helped me feel like they really do know what needs to be done to keep a food-allergic child safe. While I know that nothing is foolproof, I do feel really good about this place, and I hope that things go well!

As for the not-exactly-good news... We had another allergist appointment last week. Nothing has changed really, which we pretty much expected would be the case. However, there was so little improvement in his IgE levels for all of his allergens, the allergist actually recommended that we wait another 2 years before meeting with her again. Basically, she felt that the likelihood of seeing any marked improvement in another year was fairly slim, so we may as well wait a little longer before testing again. I certainly understand her rationale, and I actually agree that we probably won't see any improvement within the next year. It was, however, a little disheartening to hear someone (particularly the expert) actually say it out loud. I guess we just have to keep taking things one step at a time.

Back to square one

After a good experience with preschool last year, I'm kind of disappointed to say that we are in the process of finding a new preschool for Bryan. We do have options, but none of them seem to be ideal at this point. We were pretty lucky last year, as both of his teachers were nice and understanding, and willing to really work with us concerning Bryan's food allergies. They worked with us to keep him safe, but they also made sure that he felt included in the classroom. He sat at the table with everyone else at lunch, but they made sure that everyone knew they had to be careful around him. His allergies were important, but they weren't a "big deal." We were very happy with them, and with the school, and while I was disappointed that we had to move on from the class, I thought we were in fairly good shape for moving up to the next teacher.

I spoke with Bryan's new teacher at the beginning of the summer, and I wasn't really sure what to think. On the one hand, she seemed to take Bryan's allergies very seriously. However, her plan was for Bryan to sit at a table by himself during lunch. She was pretty set against letting him sit with the other kids because she felt the risk for accidents was too high. And while I understand her concern, I'm torn on her solution. Honestly, I don't know how I feel about it. Do I want Bryan to be isolated from everyone else during lunch? It's safer, certainly, but is he going to feel excluded? Or worse, ashamed, like he has done something wrong? (It doesn't help that the separate table was also used at other times during the day as the "Time Out" table.) In general, Bryan is pretty matter-of-fact about things- if we explained that he had to sit alone because it was safest, he might be okay with it. But then again, he might not.

It was enough of a concern that I started to look at other options over the summer. And I thought that I had actually found a good one- a small, owner-operated center with what I considered to be a strong educational philosophy. I spoke with the owner multiple times, as well as with both of his potential teachers. I really liked them, and while I still wasn't sure if I was over-reacting on his old preschool, I thought I would go ahead and enroll him in this new place. However, when I called last week to confirm that they still had space and to go over some of Bryan's allergy information again, I was caught by surprise. While they did have space, his new teacher was so concerned about his allergies that she really didn't feel comfortable with having him at a table with the other kids. In fact, their solution was for me to pick Bryan up before lunch each day, since we were planning to do half-days anyway. I was kind of taken aback, but I told them it sounded fine. However, after I hung up and had a chance to actually think about it, I realized- I don't know that it is IS fine. Again, I understand their concerns, and honestly, it's safer for Bryan to have lunch at home with me. But in some ways, that kind of defeats the purpose of preschool for Bryan. He needs to learn to handle himself, particularly with meals, when I'm not around.

It's quite frustrating, because I honestly don't know what to do. How do other parents in this situation feel? One school is willing to give him a "safe", albeit isolated, table- should we just be grateful for that much? Or should we ask that he be included at the table during lunch? Is that even in his best interest, given the risks? Or am I just overthinking this? Anyone? Anyone?

Four years and counting

It has been four years since we started our ride on this roller coaster of living with food allergies. We have definitely been through a lot, but we have learned a lot as well. And the next year is going to bring even more challenges (hello, Kindergarten!) But through it all, Bryan has been a trooper. I'm sure that things are difficult for him sometimes, but he has been so mature about the way that he handles his food allergies, it's hard for me to believe that he is only four years old. Bigger challenges may be ahead of us, but for now, at least- I think he's going to be okay.

On the road again

We just got back from another food-allergy adventure- our first big road trip. We drove from Austin to Dallas, stayed overnight with Grandmama and Grandpa, then set out on the road for a 12-ish hour drive to Nashville to visit some family friends. We stayed at our friends' house in Nashville (four families, three nights, two days, one house!), so we were able to take advantage of the kitchen and grocery store for most of our meals. However, meals during the drive posed a problem, (beyond what you would expect from hours in the car with two small children!) and we would have to figure out how to handle lunches and dinners on the road for Bryan.

In general, fast-food options are out for him. Burgers are cooked on the same grill as cheeseburgers, fries are cooked in the same oil as chicken nuggets, which usually have milk or egg in the coating. Some places are now offering apple slices or mandarin oranges, which would be a nice treat, but we needed to have something more substantial. Armed with a cooler, we brought along some chicken nuggets (prepared that morning at Grandmama's house; he would have to eat them cold), and a ham and soy cheese sandwich. And luckily, he was pretty happy with his options.

While in Nashville, our hosts Eric and Sarah Catherine were amazing. I talked with SC prior to our visit, as she wanted to make sure that we were comfortable with our surroundings allergy-wise. The rest of the guests were great as well. We did end up relying mostly on convenience foods while we were there- hot dogs, chicken nuggets, and Pop Tarts- but it wouldn't have made sense to spend a lot on other ingredients that we would just end up leaving after our visit. Maybe Bryan wasn't the healthiest eater while we were there, but I can live with that.

Bryan did have one allergic reaction while we were there, and I have to take the blame for that one. The last morning we were there, we made eggs for breakfast. Everyone checked with me first to make sure I was okay with it, and I thought Bryan would be fine. He hasn't had a reaction other times that people have cooked and eaten eggs around him. However, I didn't really consider the fact that two of the people eating eggs were under the age of 3- and therefore a bit more hands-on with their eggs than most. And while we made sure that hands and faces were washed, it maybe wasn't quite enough. Shortly afterwards, Bryan's left eye started swelling pretty badly, and he started complaining that his throat and tummy felt hot. No hives on his neck or stomach, though, so I gave him some Benadryl, and luckily, that was the extent of it. But as usual, not much fun.

For the drive back, we decided to take it easy and stop for the evening along the way, rather than try to make it all the way to Dallas. So for Bryan's meals-on-the-go, we had more cold chicken nuggets for lunch, but I was able to use the microwave at the hotel to warm up some leftover pasta that we had made for him earlier in the weekend. Breakfast in the morning was Pop-Tarts, and that was the end of our food-on-the-road challenge. One more milestone done- and while we survived, I think it may be a while before we try that one again. =)

A lost art

The other day, Bryan asked me if he could have some popcorn. (I'm not quite sure where he had seen or heard about popcorn, since he hasn't actually had it before!) My automatic response was "Well, Bryan, I have to go to the store to see if I can find some that is safe for you." So that's what I did. I went to the aisle that had the microwave popcorn, looked at every single package, and found not a single one that did not have a milk product in it. As I got ready to go home to tell my soon-to-be-disappointed son that I couldn't find any safe popcorn, I stopped and thought for a minute. Ummmm... people made popcorn before microwaves existed, right? In fact, I remember growing up with those fun Jiffy-Pop aluminum popping pans. And while they didn't have any of those at this particular store, surely I could figure out a way to pop popcorn on the stove, right?

Armed with a nice big jar of popcorn kernels, I sat down with my cookbooks to try to figure out how to pop these things, since the label had helpful Air Popper instructions, but nothing about stovetop popping. No luck. However, I do have this wonderful thing called the "internet" that was much more helpful.

As usual, I was making things WAY more complicated than they needed to be. But in the end, Bryan got his popcorn AND we had a lot more fun than just sticking a bag into the microwave. We had a lovely math lesson as Bryan measured out the kernels, and he got to watch them actually pop, which was SUPER exciting. All in all, a great experience- one that we probably wouldn't have had if I had just been able to pull a box of microwave popcorn off the shelf. So in some ways, his allergies actually helped make things a little more fun for us this time. Every now and then, it's nice to find a silver lining in our food allergy cloud. =)

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...