So we're having another one!

I am four months pregnant so I decided it was a good time to tell you that there will be another kid in the house come April. We are very excited - my husband and I have always wanted three kids. Ainsley will be six and Leighton will be three when the baby arrives. If Leighton will just get out of the "how many ways can I try to kill my toddler self" phase before then, I think we'll be alright. If she potty trains before then, that would be the cherry on top, but I'm not really expecting that to happen as she's not that interested yet and Ainsley was over three when she finally stopped with the diapers.

So you food-allergy minded people might be wondering what I'm doing this pregnancy to try to prevent this baby from having allergies. Well, nothing really. With Leighton, I avoided the foods that are likely to cause life-long allergies (fish, shellfish, peanuts, tree nuts). But the research on avoiding allergens while pregnant/nursing is very mixed and Leighton didn't turn out allergic to that stuff or to the allergens that I continued to eat (eggs, milk, wheat, soy) so I don't really think my avoiding those foods made a difference. So this time I'm eating like a normal person, although I don't eat a lot of the life-long allergens anyway (I don't care that much for fish and of course I'm not around a lot of peanuts/tree nuts) so I doubt the baby's getting much exposure to those foods.

Another question you might have is why on earth would my husband and I want another child when (a) taking care of one food-allergic child is so time consuming/expensive and (b) the new baby might also have food allergies, meaning double the trouble. I can understand this viewpoint and have heard at least one other food-allergy mom say her child's allergy was part of the reason she decided not to have a third baby (the allergic child was her second). But my strategy with food allergies has been that it is not going to limit Ainsley or our family. That means we will do everything we can to make sure Ainsley gets a normal childhood (goes to a regular school, goes on YMCA Adventure Princess campouts with her dad, etc.) and that we also don't let food allergies determine our family size. Sure, a third child will mean more work - on top of the special things I have to do to keep Ainsley safe - but somehow we've made our current situation work, and work well. I have never for a minute regretted having Leighton, and Ainsley adores her too, and I know it will be the same with the next baby ... even if this one has food allergies.

Of course, we will be very disappointed if the baby has food allergies - undeniably, life is easier when a kid doesn't have them. But if that happens, life really won't be that much different or harder UNLESS the baby is allergic to wheat and soy, the two things Ainsley eats the most. I just have to hope for the best, and keep reminding myself that siblings of food-allergic children have only a slightly increased risk of having allergies (10% greater risk than other kids). The likelihood is that the baby won't have allergies, and if he/she does, I would think they're likely to be to the foods to which Ainsley's allergic. If that's the case, we're well-equipped to handle them.

And one day there will be a cure, and all of my children will be able to eat whatever they want, and none of this food-allergy talk and worry will matter anymore :).

First elementary school fundraiser: selling cookie dough that contains nearly all of Ainsley's allergens

Our school didn't waste much time in rolling out the first fundraiser of the year: selling preportioned trays of cookie dough. Surprisingly, Ainsley was ecstatic about the idea of selling something to benefit her school and couldn't stop talking about it or asking me when we could go out and sell some to our neighbors. She even told me, "Mommy, it's okay if you buy some even though I can't eat it - I won't be upset."

So far she's sweet-talked my mother into buying some even though my mother never eats cookies except when she makes them for her granddaughters (my two girls), and thus has no use for cookie dough that Ainsley can't have. She also got our babysitter to buy a few packs. Despite her pleading, I am not going to buy any - I just can't imagine having cookie dough around that she can't have.

I am very happy she's taking this so well and is excited about it rather than sad she can't have the dough. This will make it easier when we have to sell girl scout cookies in a few years, I guess.

We have had the first allergic reaction of the school year ... and it didn't happen at school

I can't believe we had a serious allergic reaction within the first two weeks of school, after having avoided one for the past year. What is even more unbelievable is that it did not happen at school - it happened when I was with Ainsley ... at a birthday party.

As I've explained before, I hate taking Ainsley to birthday parties. It is a hassle for me, as (on top of getting the birthday kid a present) I have to pack a cupcake and something else for Ainsley to eat, depending on what food will be at the party. But when Ainsley started kindergarten I decided to take her to more parties so she could socialize with her classmates, with whom she'll be going to school for the next several years. The first birthday party of the school year happened two weeks after the start of school. It was for a sweet little girl whom Ainsley hardly knew, at a barnyard close to our house. The barnyard was really a petting zoo. Attached to the petting zoo was a party room where the cake and other food was to be served.

As soon as we arrived, Ainsley started jumping in a bounce house that was by the petting zoo. After she tired of that, she wandered over to the petting zoo and began petting the bunnies, goats, and miniature horses. She did that for about 10 minutes and then went back to the jump house (after I put sanitizer on her hands).

A few minutes later, Ainsley started crying in the bounce house because she'd landed wrong on her ankle. When she climbed out so I could look at the ankle, I immediately noticed lots of raised hives on her forehead. They were all near the same location so the result was that most of the center of her face looked horribly red and swelled. I instantly forgot about the ankle and got into allergy-parent mode. I knew right away what had happened - the animal food must have had nuts in it, and she must have gotten residue on her hands from petting the animals and then spread it to her face.

I took her as fast as I could to the bathroom, where I gave her two teaspoons of Benadryl and began washing off every part of her exposed skin. I then washed off my arms, legs, and face and did the same for my 2-yr-old, who was with us. I was so relieved that Ainsley was exhibiting no internal symptoms. The hives on her face looked nasty, but at least she didn't need the Epi-Pen.

As soon as I washed all of us off, I explained to Ainsley that we had to leave the party because she couldn't be around the residue anymore. She was so upset - she started crying hysterically, because she wanted to stay. This is one of those times when I kept saying over and over to myself, "Food allergies really suck." What a cruel condition to have, that keeps your kid from enjoying or even staying at a birthday party.

I walked back to the party quickly to thank the host for inviting us and to explain why we had to leave. Then we hurried out of there and went home, where I had all of us immediately strip down and shower. I then threw all of our clothes into the wash and hosed off our shoes. It's funny how contaminated I felt at that moment - like I had rolled around in toxic waste. What a strange life we lead.

Clearly, I re-learned my lesson about birthday parties. We'll certainly never go to another one at that barnyard, and I will be even more careful around petting zoos (we'd never had a problem at one before, but I knew it was possible). And next time we get invited to a birthday party, we'll go if it's for a good friend of Ainsley's; otherwise, we'll just stay home.

Ainsley about 20 minutes after she got the Benadryl and was washed off. It actually looked worse before that.

Allergy letter to parents of other kids in Ainsley's class

Some of you wanted to know the wording of the letter the school sent to the parents of the other kids in Ainsley's kindergarten class to inform them of her allergies. I am retyping it below. It's a standard letter the school district has for food allergies. On the back, the letter has a list of foods that are safe for Ainsley so that parents can send those foods to school for snack time (a different child is assigned to bring snack for the entire class each day). Ainsley doesn't eat the snack that's brought - she eats her own snack (she picks from a box we sent that the teacher keeps in the classroom) - but we still wanted kids to bring only snacks that were safe for Ainsley since they eat snack in the classroom.

The letter (front side):

Dear Parents:

A student in your child's kindergarten class this year has a severe food allergy to peanuts, all tree nuts (cashews, pecans, walnuts, pistachios), sesame seeds, eggs, and milk. We are distributing this letter to the parents to help you understand this situation and to help foster a safe and worry-free year for this student and his/her parents.

This student's allergy can be life-threatening and the student carries an Epi-Pen at all times. We need your help in maintaining a nut-free, egg-free, and milk-free environment in the classroom and ask that any classroom snacks or treats that you send be nut-free, egg-free, and milk-free. The allergy can be triggered not only by directly eating or coming into contact with the above but also by exposure to foods that contain any peanut/nut traces, oils, flours, or food that is processed in a plant with peanuts, nuts, eggs, and milk or sesame seeds. For this reason, most pre-made cookies, prepared cookie dough, and cookie mixes are off limits. Also, many bakeries use nut products, flavorings, or oils in their facilities or products. if you are sending in any type of classroom treats, please notify the teacher in advance so that arrangements can be made to ensure the allergic student has a safe snack or treat.

We want you and your child to understand that the student's allergy can be triggered even by ingesting or exposure to very small amounts of the above allergens. I will talk with the students in the classroom to discuss ways they can help keep the classroom safe, such as always washing hands after lunch or snacks, not bringing snacks with these allergens, etc.

The school realizes that helping us to maintain a nut-free, egg-free, and milk-free classroom takes a certain amount of effort and diligence on your part, and we thank you in advance for your cooperation in helping us maintain a safe, healthy environment for all of our students. If you have any questions, please feel free to contact me at the school.

Sincerely,

[The school nurse]

Back side:

This is a list of recommended snacks that are free of milk, eggs, peanuts, tree nuts, and sesame seeds. The list below is not exhaustive and there may be more options. Please note that it is important to read the label as manufacturers are required to list the eight major potential allergens in bold type in or after the ingredients list.

Fresh Snacks
Fresh fruit
Raisins – plain only (not covered in anything else, like yogurt or chocolate)

Prepared Snacks
Bagels – Thomas brand only (original, cinnamon/brown sugar, blueberry, & whole wheat
flavors only)
Ritz Crackers (Nabisco) -- Original, Whole Wheat, Honey Butter, Hint of Salt, or
Roasted Vegetable flavors only (no Ritz Bits please – Ainsley is allergic to all types of them)
Ritz Muchables Pretzel Thins (Nabisco) – buttery flavor only
Wheat Thins (Nabisco) – original flavor only
Triscuits (Nabisco) – original flavor or reduced fat original flavor only
Triscuits Thin Crisps (Nabisco) – original flavor only
Teddy Grahams (Nabisco) – honey, cinnamon, chocolate chip, and chocolate flavors only
Honey Maid Graham Crackers (Nabisco) – original, honey, or cinnamon flavors only
Saltines (Nabisco) – plain or multigrain flavors only
Premium Soup & Oyster Crackers (Nabisco) – original flavor only
Keebler Original Club Crackers – original or multigrain flavors only
Keebler Town House Crackers – original flavor only
Keebler Grahams Bug Bites
Keebler Scooby Doo Graham Cracker Sticks – cinnamon or honey flavors only
Lorna Doone Shortbread Cookies (Nabisco)
Barnum’s Animals Crackers (Nabisco)
Ginger Snaps (Nabisco)
Rold Gold Pretzels (including thins, sticks, tiny twists) – plain flavor only
Rold Gold Braided Twists – honey wheat flavor only
Quaker Quakes Rice Snacks -- apple cinnamon flavor only
Good Health Natural Foods Veggie Sticks / Veggie Chips
Pirate’s Booty – veggie flavor only (not the kind coated in cheese)
Snapea Crisps (by Calbee Snack Salad) – plain flavor only
Sun Chips – original flavor only
Cheerios – plain and multigrain flavors only
Frosted Mini Wheats (Kelloggs) – original flavor only
Oreo Cookies – original kind only
Stacy’s Pita Chips – plain or cinnamon sugar flavored only

***********

I would love to say that all of the parents have diligently paid attention to this snack list and sent only safe snacks, but in reality I think some of them didn't read the letter at all and I know that at least a few have sent things like string cheese that are clearly unsafe. There is really nothing I can do about that as this is all about voluntary compliance. I do think that the kindergarten teacher doesn't serve certain things if they are brought, like peanut butter crackers, because she knows how much we fear those foods in particular (she has a few back-up snacks in her classroom).

I have already had to send a reminder/clarification email to the class parents because at Meet the Teacher night Ainsley's teacher mentioned that she had a child with a peanut allergy in her class and didn't mention Ainsley's other allergies. Some of the later questions from parents made clear that they thought Ainsley had only a peanut allergy. My follow-up email is below:

Hi fellow class parents,

For those of you who attended Meet the Teacher last night, I wanted to clarify that my daughter, Ainsley, is severely allergic not only to peanuts, but also to tree nuts (such as cashews, walnuts, etc.), dairy, eggs, and sesame seeds. That is why the letter the school nurse sent home about Ainsley listed all of those items as allergens, and that is why the suggested snack list on the back of that letter listed only foods that do not contain any of those allergens (if any of you did not see the suggested snack list on the back of that letter and no longer have the letter handy, I'd be more than happy to send a copy of the list to you if you let me know). We feel it is important for the snacks the other kids eat not to contain any of her allergens because it is so easy for the residue from those snacks to get on everything in the classroom since it will be on all the children's hands and they often eat the snacks in class.

It is true, however, that at lunch Ainsley can sit by other kids who are eating dairy, eggs, and sesame - she just can't sit by kids eating things like peanut butter & jelly because those sandwiches can be messy and the peanut butter (or other tree nut butter) might get onto her eating surface. Thus, the teacher checks the other kids' lunches and puts kids who do not have peanuts/peanut butter or tree nuts/tree-nut butter in their lunch around Ainsley.

As for birthday celebrations and parties, we definitely don't mind if you send treats that contain dairy and eggs as this wouldn't be an everyday thing like snacks (and it is so hard to find tasty treats that don't contain dairy & eggs). We would, however, appreciate it if you would avoid sending treats with peanuts/tree nuts in them as we would like to keep peanut/tree-nut residue from the classroom because it as particularly potent in terms of setting off an allergic reaction. Ainsley will have her own separate treat on those days so do not worry about her being left out!

Thanks so much for your understanding, and please don't hesitate to contact me with any questions.

Ainsley's 504 Plan

I met with the nurse, counselor, and all three kindergarten teachers today to go over the final version of the 504 Plan/IHP we hammered out in the Spring. I was extremely pleased with the way the meeting went - they were all warm and friendly and wanted to see a picture of Ainsley, know what typically happens when she has an allergic reaction, and what we usually do when it happens (they know to give her Benadryl and, in some cases, the Epi-Pen, but it was wonderful to have an opportunity to explain how an allergic reaction usually manifests in Ainsley and precisely what I do in those situations). Ainsley's teacher was happy to receive my bag full of 12 weeks' worth of individually-packaged snacks for her. They also liked the bright red insulated bag I bought to keep Ainsley's Epi-Pen and Benadryl in for the classroom (the nurse will have a set of Epi-Pens and some more Benadryl in her office too).

So here are the important parts of the 504 plan that I wanted to share with everyone. I am not pasting the entire thing because it is very long and some parts simply describe Ainsley and her health history, etc. Here are the important parts:

SCHOOL ACTIONS

-Perfect Measure Children’s Benadryl x 2 will be in the insulated bag in the classroom and in the clinic.

-Epi-Pen Jr. Dual Pack x 2 will be in the insulated bag in the classroom and in the clinic.

-Home supplied safe snacks will be kept in the classroom and in a freezer in the cafeteria (e.g., cupcakes in case a child's parent sends birthday treats for the class).

-Home supplied lunch box will be kept separate from other children's in the classroom.

-The school will send out a district letter to the entire class informing of student’s allergy including recommended snacks.

-The school will provide a safe environment in the classroom through education of food allergies and its effect [the first week, the nurse will show the Alexander the Elephant movie to the class and talk to the kids about food allergies, no sharing food, etc.].

-The school will provide a designated table adjacent to a regular table that will be cleaned by assigned staff prior to schedule lunch time. Cleaning will be with “Break Up” a high level cleaner that breaks up protein, animal fat and grease.

-The child will sit in a designated seat at the end of the table with students peanut/nut-free sitting around her.

-Student or teacher will carry the insulated bag with Epi-Pen and Benadryl so that it will remain with her at all times.

-HVAC in the clinic will maintain constant temperature year around from 68°-78°.

-Nurse or teacher will provide hand washing education to the class at the beginning of the school year.

-Student will wear a medical alert bracelet.

-Procedure to follow for field trips: (a) Teachers will notify the school nurse in advance of all field trips. (b) Arrangements will be made with parent, nurse, and anaphylactic trained staff to ensure student’s supplies accompanies the student to the event. (c) A copy of the student’s Quick Reference Emergency Plan will accompany the trained staff.

-Training for school personnel: Student’s teachers and other staff employees will receive annual education regarding the student’s allergy. This includes general information, signs and symptoms of anaphylaxis, administration of Benadryl and administration of epinephrine, Universal Precautions, resources available when questions/problems arise, and emergency measures. All staff members who will have direct contact with the student will receive a copy of the Quick Reference Emergency Plan. In addition, the student’s teachers will receive a copy of the IHP. This training will include substitutes/ IHP in the substitute folder when assigned to the classroom.

************

As you can see, the plan is pretty detailed and I am very happy with it. I take no credit for it - it is pretty much word-for-word the same as that of a peanut-allergic child going into the second grade whose mom revolutionized the school in terms of making it food-allergy friendly.

A couple of things about the plan: (1) It states that Ainsley will eat a separate snack from the other kids. The school has one child bring in snacks for the whole class each week. The school is sending out a "safe snack list" to parents of her classmates that lists only snacks that are safe for Ainsley. I thought about allowing her to eat the snack another kid brings in as long as it's on the safe snack list, but then I got nervous about it and decided that, for now, Ainsley will eat her own snack regardless of whether the class snack is also safe for her. Right now I'm too antsy about the possibility about ingredients changing/teacher accidentally giving her something that's not on the list/etc. Nevertheless, I am thrilled the school is sending out the safe snack list I sent them because that means that, at least most of the time, the class snack will likely not contain anything Ainsley's allergic to and therefore her allergens won't be spread around her classroom (they eat snacks in class).

(2) I also contemplated allowing her to sit next to anyone, not just kids who don't have peanuts/tree nuts in their lunch. But then I got nervous again and decided to play it really safe this semester and see how things go. Thankfully, Ainsley's best friend is in the same class as she is, and I bet they will want to sit together every day, so there's one kid I can count on who won't have peanuts/tree nuts in her lunch. Note that Ainsley is NOT sitting at a peanut/tree-nut free table. Her table will be cleaned with a special cleaner that breaks up food proteins, but she will be sitting at the same table as kids eating peanuts/tree-nuts (and eggs and milk). But she will be sitting at the end of the table so she will only be sitting next to one child and across from one child. The teacher will check the lunches of those two children to ensure they are peanut/tree-nut free.

(3) You might also notice that the plan specifically provides that the nurse's clinic will be temperature-controlled at all times. Unfortunately, the classroom won't be. That is why I bought an insulated container for the medication we'll keep in the classroom.

(4) Another important part of the plan is the provision for the training of substitute teachers. My greatest fear is that a substitute will accidentally give something to Ainsley that she's allergic to (like a snack, birthday treat, etc.) Thankfully, Ainsley is very aware of her allergies and I feel confident she wouldn't accept anything like that from a substitute. Still, I wanted to ensure that the substitute knows about Ainsley's allergies. So, under the plan, the staff is to notify the nurse before the start of school that a substitute is in Ainsley's classroom. The nurse will then make sure the substitute knows there's a child with food allergies in the classroom and will train him/her on how to administer emergency medication, including the Epi-Pen.

Any questions/concerns/suggestions? Please let me know! This has been a real learning experience for me, but so far I'm thrilled about how it's turned out.

Getting ready for Kindergarten!

Just wanted to post a quick note to let you know that allergy planning for Ainsley's first day of Kindergarten is well under way. She starts on Monday, 8/23, so right now I'm busy finalizing a letter to the parents of kids in her class complete with a safe snack list, confirming with the nurse how many Epi-Pens/how much Benadryl I need to bring to school, thinking about what sort of safe snacks I will buy to stock in Ainsley's classroom in case the class snack isn't safe for her, etc. We will have our second 504 meeting to finalize the plan this week (not sure when yet). I feel so much calmer about this than I thought I would. I think it's because Ainsley really is ready for Kindergarten, and is mature enough to take on some responsibility for keeping herself safe. I am very excited about how she'll like Kindergarten and about all of the new friends she'll make!

Loosening up

For about three years, we have been in "lock-down" mode in terms of allowing Ainsley to eat food outside of our house. Ever since her last severe allergic reaction in a restaurant (Mothers' Day 2007, when she was 2.5 yrs old) I have refused to let her eat anything at any restaurant except for the cheese-free pizza at my favorite local pizza place, the smoked meat at one of our favorite bbq joints, and a few select things at McDonald's (plain hamburger or chicken selects and apple dippers w/o the sauce), Wendy's (hamburger or kid's chicken sandwich and fries), and Burger King (fish patty or chicken fries and onion rings/french fries/apple fries). The one exception to our ban on other restaurant food is if a restaurant has fresh fruit or corn chips (we live in Texas so at least once every couple of weeks we'll go to a Mexican restaurant and have never had a problem with the corn chips).

Now that Ainsley is 5 and is very good at telling me as soon as she thinks she's having an allergic reaction (usually itchy mouth is the first indicator), I have begun loosening up a little. When we were on vacation in Michigan, I allowed her to eat a cheese-free pizza from a place that assured us their crust was safe for her - thankfully, she loved the pizza and had no problem. I am also allowing her to eat McDonald's chicken nuggets now because even though they contain a slight bit of milk, they don't cause any allergic reaction (this is per my allergist's recent advice that we can start introducing certain cooked/baked things containing very small amounts of milk or egg).

This weekend we introduced a new restaurant to her - Papa John's Pizza. Dave has a love of Papa John's that goes back to his college years, when he discovered he could get bacon (not Canadian bacon - real bacon) on a Papa John's pizza. He introduced me to it in law school, and for years our favorite road-trip food was bacon and pepperoni Papa John's (delivered to whatever cheap motel room we were staying in).

Now that I'm feeling braver about trying new things with Ainsley, I had him check to see if Papa John's crust was safe for her, and low and behold, it is - the thin crust contains milk but the regular crust does not. We ordered a small cheese-free pizza for her with bacon and mushrooms and she went to town on it.

I can't express how liberating it is to be able to give Ainsley new kinds of restaurant foods. These good experiences have encouraged me to talk to other restaurants to see if there are things at other restaurants that are safe for her. She loves trying new things and we love seeing her life is get a little bit more normal.