Accommodations May Not Be Enough for Peanut Allergy

I was reading Peanut Free Mama and she excerpted and linked an excellent post on Rocks In My Dryer. The author of the post has her own blog, Gravity of Motion. Her post expresses a lot of my concerns and feelings.

Jane Anne addresses a concern I've had recently when she writes:

I appreciate efforts by friends and family to keep David safe. There are times when I know that people have tried to avoid peanut products but I still don’t feel comfortable letting David eat the food. Without knowing the ingredients first-hand, I cannot trust that an item does not contain nuts or contain a product that has a peanut warning. I am gracious and appreciative but I cannot take any chances.

I've recently come to realize that the sincere accomodations made for my daughter may not be enough - especially in the case of cake or other baked goods. For instance, I recently learned (by reading the bag) that Nestle Toll House Semi-Sweet Chocolate Morsels are made in a facility that also processes peanuts. My daughter can't have them, it's not worth the risk. Hershey's also makes semi-sweet chips and they say "In instances where we have a concern about possible crossover by an allergen we take the added precaution of including an allergy information statement on the label." Well, I'm not sure I'm willing to take that risk and common sense tells me that they also make the Reese's Peanut Butter chips, so there could be a potential mistake on the line or an accidental failure to label (FAAN sends allergy alerts all the time for accidental content, I haven't seen one for Hershey's but I see it as a potential risk that is not worth it given the severity of my daughter's allergy. Other moms might make a different decision). So, we'll have to pass on anything with chocolate chips. I recently purchased several packages of chocolate chips from Vermont Nut-Free because of this concern but I certainly don't expect anyone else to go to that level of planning, expense, or trouble.

I'm also aware that until I became aware of my daughter's allergies (and for some time even after that), I was clueless about cross-contamination issues. I've read plenty of stories since then about knives that were wiped clean after making peanut butter sandwiches and then later used to cut apart "peanut-free" items (or dipped into jelly jars). It can happen, but I'm not sure a parent whose child doesn't have food allergies would even think of it (I wouldn't have). My daughter's last allergic reaction (which landed her in the ER for several hours) was to a bakery cookie. So even if I'm told that a baked good contains no peanuts, I'm still probably not going to allow my daughter to eat it.

I share Jane Anne's plea as she writes:

Please be understanding if you try to make something allergen free and the allergic person is still not comfortable eating the item. Above all, an allergic person has to be safe and cannot take risks.

I want you to understand that we do not want to inconvenience anyone; we only want to protect our child.

My thoughts exactly. I don't want to insult anyone, but it boils down to the simplicity of NOT eating an item verses risking that my daughter will have an anaphylatic reaction. It might seem sad that she cannot partake, but it would be much sadder for her to have to leave the party, vomitting constantly, get a shot in the leg, and go to the ER, where she will have to stay for 4 hours so they can be sure her reaction is not biphasic (and that's the best case scenario on her reaction. I've read enough worst case scenarios to not want to discuss it).

Dr. Wood shares his own story about breaking his "no cookie rule" which resulted in a severe allergic reaction.

Halloween Candy - To Eat or Not to Eat?

I got an email from a friend warning about certain Halloween candy that might be tainted with melamine. It passed muster on snopes, but a blog post for the LA Times seems to suggest it's alarmist. What's a parent to do? I don't know, I've got a kid with a severe food allergy to peanuts, so we're probably chucking it all - except for the KitKat's that were imported from Canada (peanut-free facility -- go Canada!). I'm pretty sure my daughter doesn't like them anyway, though she claimed she might. Oh, I also have Vermont Nut Free chocolates - both purchased from Peanut Free Planet. I do question whether this was necessary.

The beginning of the peanut allergy

I wrote this post because I've been meaning to and in response to this call for stories.

About 2 years ago, I learned that my oldest daughter is allergic to peanuts. This caught me completely off guard because she had eaten peanut butter around the age of 2 and had had no reaction that I saw. I'm not sure she ever ate much peanut butter, but I clearly recall when and how she was exposed to it (peanut butter spread on crackers given to her with my permission by a neighbor). I remember I was nervous but relieved when there was no reaction. I don't recall that she didn't like them.

I'm not sure how much peanut butter she ate later on. I think I probably bought Ritz bits peanut butter crackers, not sure if she ate them. I do remember her telling me she did not like peanut butter. She is a picky eater, I thought she was just being picky.

A month or two before she turned 6, I remember being at a playdate. The mom asked if Suzanne was allergic to peanut butter because she wanted to offer her a peanut butter chocolate chip cookie. I said she didn't like it, but she might eat it because of the chocolate chips. She ate a few bites of it. Within a half hour, she told me she felt sick. I figured she had picked up a bug and we left. She threw up a few times in the car. I don't remember much more about it - I don't think she vomited when we got home. She took it easy the rest of the day and I chalked it up to a bug.

A month or two after that, I bought some chocolate peanut butter at Whole Foods. I thought it would be great if my picky eater would eat peanut butter sandwiches. I offered her a baby-sized spoonful. She asked what it was, I told her to try it. She ate it. I asked her if she liked it, she said it was okay. I told her it was peanut butter, she got upset with me and told me I should have told her. I thought she was being a drama queen (yes, I know I'm a bad mom). She threw up. Then she got very conjested. A friend of mine's son had recently had a peanut allergy and I knew about giving Benedryl, so I gave her some (or maybe it was another antihistamine I had). I watched and waited and she threw up a few times over the course of a few hours but she seemed fine by bedtime and we put her to bed (that might have been dangerous). But, everything was fine.

I think I understood at this point that she had a peanut allergy. I talked about it at a park day and another mom overheard me and told me I should take her to an allergist and get an epi pen. I really didn't see the point, I mean, just don't eat peanuts, right? How hard is that? I even said this to my mom, I think. Well, my daughter's annual check-up was soon after so I mentioned the allergy to her pediatrician who gave me a referral to an allergist. I made the appointment and we had to wait a month or so. The allergist did a skin prick test and it came back positive for peanut - she gave me a prescription for an Epi pen and a prescription for a blood test. My daughter hates blood tests and I wondered what the point was - we knew she was allergic. I saw no point. I did fill the Epi pen prescription, but I blew off the blood test. At this point, I will fault the allergist. She did not give me any information about food allergies, not even a pamphlet from FAAN. I don't recall anything she did to educate me or to suggest that I should educate myself. It seemed very cut and dried - don't eat peanuts and peanut products.

A year later, I realized my Epi pen was about to expire, so I wanted to get a refill. I called the allergist's office and the nurse was a bit unfriendly - they always fill an Epi prescription, but she noted I had not been for a follow-up or gotten the blood test. I made an appointment and went to it. I got another blood test order and this time, we did it. My daughter handled it really well (my daughter is terrible in the doctor's office when it comes to anything that might lead to pain - it's bad). The blood test (RAST test) came back showing high levels for peanut (over 100), meaning it's unlikely she'll outgrow it. It also showed allergies to pistachios, cashews, almonds, and sesame. The allergist's office sent me the results but said I didn't need to come in. This was about a year ago. Again, no education on food allergies from the allergist.

So, up until that point, she avoided peanuts or peanut products. We still had peanut butter in the house, I still bought Reese's Peanut Butter cups to give out at Halloween. The allergy had very little impact on our life. The epi pen was in my purse, so it was with her most of the time (we homeschool).

Last February, my husband (phew!) bought her a cookie at a bakery where she has had cookies lots of times. Well, from what I gather, it was on a tray that also held peanut butter cookies. She ate half the cookie and then they came in found me (I was in a museum exhibit and the bakery was a vendor in the museum). She told me her tongue was itching her. She prepared her thigh for the epi pen. I told her it wasn't necessary and gave her Benedryl. We left the building. She started throwing up in the car (ziploc bags and used butter containers make great barf bags). She got very congested. I was very worried, but I had seen this before. She was very thirsty and kept drinking a lot of water and kept throwing that up into the bag.

We got home and she seemed okay. We put her down on the couch. She seemed sleepy so we let her rest. I had forgot that you should always put a towel under a sick child. She vomited. It was a mess, so I sent her up to shower. My husband took care of that while I cleaned up the couch. When she got out of the shower, he told her to get into her jammies and get ready for bed. I saw hives developing all over her body. I had hit my watch and wait threshhold. This was a new symptom she had not had last time. Strangely enough, I had just had my first experience with hives the week before when I woke up with them all over. I had called the nurse hotline for our insurance and they had told me to go to the ER since I had hives on my face (and facial swelling), because of the possibility that my throat could close up. So, I knew a little something about hives.

Off I sent DD to the ER with DH (she picked him over me, I wonder why). I kept listening for wheezing but didn't hear any and she did not seem to be having trouble breathing. I did not give the epi because after reading the package insert, I was a bit nervous about it and I was under the wrong impression that it was really only needed if there were breathing difficulties. I was clueless about anaphylactic shock - though from what I know now, I don't think she was in it anyway. I did give the Epi Pen to DH in case. Now I have been told by the allergist that once two systems are effected, she should have the Epi. Since her previous reactions had not required a trip to the ER, I was really trying to avoid that and I know once you use the Epi, you are off to the ER. My reasoning may be flawed, but I did have reasons for the actions we took (or failed to take).

They got to the hospital and it sounded like she got a liquid steroid. They kept her for a few hours for observation (to make sure the reaction doesn't come back aka biphasic). She came home and that was that. I don't really know why I didn't look more into the issue except that the next week she was in the hospital for stitches for a serious laceration she got while playing in the front yard. I think I was just shell-shocked.

I do have some friends who are knowledgeable about allergies and it was at this point that I started asking for more information. I learned that we should not be buying foods from the bakery, the risk of cross-contamination is too great. I learned we should not be going to ice cream parlors, those scoops are used in all different flavors, they aren't cleaned and it's possible the ice cream has bits of peanuts from being scooped with a scooper used on a peanut flavor. One friend also strongly suggested I find an allergist who made food allergy education a priority and derided allergists who merely give an Epi pen prescription and send you on your way.

I'm still not sure why I didn't do more research but maybe that was all I could handle. Maybe because her allergies were so limited and obvious - peanuts are not like milk or wheat, they are pretty obvious and easy to avoid, was my thinking. My husband has a mild tree nut allergy and he doesn't have much trouble avoiding those - it just never seemed like a big deal.

After my daughter had a trip to the stables for a horse grooming and riding activity and came back with severe facial swelling and red eyes, I decided it was time for another trip to the allergist and to start learning more about allergies. Our appointment was two-fold, it was a rather delayed follow-up to her February reaction and to get testing for environmental allergens. This time, I was a bit more prepared with questions. There is a new doctor in the practice and she answered the questions I asked and she did give me a FAAN pamphlet. We had some testing done and then followed-up with more tests -- I had a whole list of questions for the follow-up visit. This was an important lesson I learned from the yahoo group TerrificKidsWithFoodAllergies -- get your questions all set and ready so you can ask the allergist at the appointment. I think I even got some suggestions for questions I should ask.

I am now vascilating between freaking out all the time to thinking it's not that big a deal. For a long time I was assuming that since her last reactions have been pretty slow moving and have not involved breathing trouble that we would have a lot of warning. Now I've learned that past reactions are not predictors of future reactions. That scares me. So now she has a medical alert bracelet and carries and epi pen and I'm informing the adults who are with her whenever I am not.

I am trying to figure out how to be reasonable in my notification to others about the allergies without sounding like a whiner or being demanding. It is becoming obvious to me that even if you tell people of the allergy, you can not be certain that they will know about cross-contamination issues. I know I wasn't aware, even when I knew I had a kid with allergies and I certainly was even less aware before I did.

So now, I'm going through an emotional process of mourning the loss of things like going to an ice cream parlor and bakery and worrying about going to restaurants. But I also realize how lucky we have been and how a food allergy is better than a lot of conditions or diseases a child could have. I've also been spared the worry and concern of having a toddler with severe food allergies. My DD is old enough to advocate for herself and though it saddens me, it also makes me proud to see her taking responsibility by carrying her Epi Pen and declining food that she knows (or even suspects) is not safe for her to eat. She actually turned down pieces of a Hershey bar that was offered to her when she was at a recent social event (which is safe - I checked the package) and later told me she knows she can't eat food that's not from home.

By a Mom of a Peanut Allergic Kid

I've been known to rail against Newsweek articles on this blog, but here's one I really liked. Well, not an article, an opinion piece. Could have written it myself. It's very hard to find a balance between asking for reasonable safeguards and freaking out because your kid could die. Probably won't, but, well, you really don't know. And this author has not seen her child have a reaction, and I hope she never does.

Saying No Really Isn't Hard

The cover of the September 13, 2004, issue of Newsweek blares the headline, How to Say ‘No’ To Your Kids -- Setting Limits in an Age of Excess. The article The Power of No sent me into a Sparky rage.

To read more, click on the Xs

The article starts with the story of a mom who tries to resist her 9 year-old son’s request for a $250 electronic gadget. Of course, he eventually gets it, in part, because she asks around the neighborhood and finds that her son’s peers own the same or similar gadgets.

Why do we care what other people own? Why was this an important factor in this woman’s decision to buy something for her son that she didn’t really want to buy? I suppose the thinking might go “he’s a good kid” (its noted in the article that the mother thought this), he deserves to have what other kids his age have. Why? If the parent doesn’t agree with the purchase, why make it based on the fact that other mothers have decided its okay for their kids?

The article says, “[t]his generation of parents has always been driven to give their kids every advantage” from classes to college acceptance. To me it seems that the advantages conferred are those that the parent determines. Maybe a true advantage would be time for the child to dream and explore, rather than being shuttled from class to class and activity to activity.

The article notes that recent studies show that “[k]ids who’ve been given too much, too soon grow up to be adults who have difficulty coping with life’s disappointments. They have a distorted sense of entitlement that gets in the way of success both in the workplace and in relationships.” I ask, who is to blame for this excess? The article suggests lots of possibilities – TV commercials, marketing in schools, product placement in TV shows and movies.

A big factor in all of this is the issue of time. The article notes that many parents give in to the material demands of their children because the parents are attempting to buy peace by giving in to the demands rather than wasting family time with conflict. This is a very real issue, especially for those double income couples that don’t need the second income for survival but want it for the luxuries they can buy. Why wouldn’t a parent give in? They are working to earn the money that allows them to give in to these demands. The time the job takes away from the family helps create the guilt that makes the parents want to give in. Ultimately, what is the money for, if not to give in?

The article asks, “[h]ow do well-intentioned parents say no to all the sports equipment and arts and language lessons they believe will help their kids thrive in an increasingly competitive world?” Well, who is asking for these activities? A recent article in the Washington Post Style section chronicled a family’s efforts to ensure that their son would score high enough on the new SAT to allow him entry into the college of, presumably his, but most likely their, choice. The article suggested that the young man would rather be surfing in Maui and not reviewing vocabulary and whatever else he was being forced to do. The parents were quoted as saying that they would do whatever it takes in terms of tutors and review. Why are they doing this? I can only assume it is because they define success as a high SAT score ensuring entry into a prestigious college. And then what? When is that young man going to be allowed to live his own life and have his own dreams? I imagine that they think a college education will equip him to do these things and perhaps it will. In the meantime, however, he is being denied the freedom to choose how to live his life. When he finally gets the chance, will he be prepared for it, or will he act out against the pressure and control he’s lived under for years?

While placing limits on the material demands of the child, the parent should also place limits on the pressure he exerts on his child.

“Children need limits on their behavior because they feel better and more secure when they live within a certain structure,” says family therapist Laurence Steinberg of Temple University. “Parents should not make the mistake of projecting their own needs or feelings on their children.” Of course, if they don’t give them enough time or attention to learn what the child's desires are, what else can they do but project their own needs and desire on their kids?

On the issue of whether requiring a child do household chores helps instil values, the article notes that “[f]ew parents ask kids to do anything around the house because they think their kids are already overwhelmed by social and academic pressures; [adding chores] almost seems cruel.” Perhaps the parents should focus on these pressures that are overwhelming the kids – can the parent do anything to alleviate these pressures or support the child? Is the parent creating or adding to these pressures, perhaps by asking why aren’t you more popular? Go to more parties? Talk to more kids? Why aren’t your grades better or your test scores better? Why don’t you become more involved in sports or debate or yearbook?

Where does the pressure come from? Parents can do a lot to add to this pressure, but they can also do a lot to relieve it. Instead, it appears that most parents want to put on the pressure in order to compete with the neighbors and then buy off any ill-effects of this pressure, or ill-will of the resentful child, by buying the child things.

Parents don’t want to nag their kids into doing chores anyway, the article asserts, again, quoting from a therapist, this time Irene Goldenberg. “When parents have so little time with their kids, they don’t want it to be filled with conflict.” The time issue rears its ugly head again.

The article discusses people looking for hard and fast rules for setting appropriate limits for their kids. They complain that it is the other parents who erode these limits. The proposed solution is to discuss these issues and “create your own village.” To me, this is bunk. The key to determining appropriate limits for each child resides within the child – his reactions and attitude toward what he receives and how he treats others. This is suggested earlier in the article when Eve Gagne, talks about her 3 year old daughter and says, “when it comes down to it, nobody really notices the outfit. They notice her behavior.”

“Parent’s still feel they have a lot to learn about how to work with their neighbors to enforce the same values.” Why do they have to have the same values? To me, it smacks of both socialism and fascism. Take the responsibility, accept being the bad guy – sure, your kids will be mad at you for awhile, but they would be mad about some issue or another anyway.

The issue is control. You’re controlling them in the ways you’ve chosen (by pressuring them to achieve academically and socially) and they are controlling you in the only way they can, by demanding material things.

Parenting thought for the day

When I was potty training my eldest, I recall reading in a book about the subject that you can't make a child eat, sleep or use the potty. After my education and homeschooling reading, I'd add that you can't make a child learn. Considering a bit of psychology, I've formulated today's pithy parenting tip:

You can't make a child eat, sleep, use the potty or learn...but you can make him crazy.

Quittin' the Family

Dear Husband, Daughter, and Daughter:
To read more, click the Xs...

It is with mixed emotions that I tender my resignation from the position of full-time wife and mother. While I've generally enjoyed my work over the past several years, for some time I've been considering whether my abilities and talents might be better applied in a different environment. I feel as if I've reached my potential in the areas of meal planning and preparation, toddler negotiation, and playground politics.

Therefore, I have accepted a position with the firm of High, Tower and Peak in their Womyn's Rights and Rehabilitation department. I am looking forward to phone conversations uninterrupted by children eager to speak to the caller and any conversation or activity uninterrupted by a child needing discipline, direction or diplomacy in resolving conflict. I also look forward to styling my hair on a daily basis. Most of all, I look forward to sitting around the office and drinking coffee all day.

Very truly yours, Sparky

.....huh? where am I? blink, blink (eye rubbing)...I just had the strangest dream.

Book for new sibling

A good book for a child who has just become a big brother or sister:

Do You Still Love Me? by Charlotte Middleton
Picture book. The story of a dog's feelings when his girl owner gets a new chameleon -- bold, bright, simple pictures.