Sunday, August 31, 2008
I'll admit I've struggled with this from time to time. But, after Tyler's reaction on June 30, I focused on a few things that greatly helped ease my anxiety. I've shared them with others who encouraged me to post them. Even if you are not a church goer, I still think you might find some comfort in these thoughts:
*God loves my child more than I do. It's hard to fathom that but it's true.
*God knows where each speck of peanut is, I do not. When you combine His deep love for my child and the fact that He is all-knowing, I realize that He wants to keep Him safe as much as I do.
*He picked me to be my child's mother (or father) for a reason. He trusts me with his allergy. He knows I alone can help this child in a way that no one else can.
*God will give me the instincts I need (these are developed partly through educating myself).
*This peanut allergy is all in His plan and He does have a purpose. I want to allow myself to be amazed at the positive things that come as a result of this situation.
The last one was what inspired this blog. I knew that keeping Tyler safe was not enough. I needed to do more. I had no idea if anyone would read the blog but I knew I could make a positive contribution.
If you are a person of faith (no matter what the faith is), how has it helped you cope with your child's peanut allergy? I would love to hear from others through comments or e-mail.
Saturday, August 30, 2008
Today we have Alexis from "Taking the Lid off the Sun" sharing a story that reminds us that sometimes its OK to laugh at ourselves when it comes to PA.
Want to see me hyperventilate? Just show me a needle that is designed to pierce human skin, then sit back and enjoy the show. This must have something to do with the inordinate number of shots I received as a child. We lived out of the country off and on, and I have vivid memories of being pulled down the hospital hallways, screaming and writhing in anticipation of the dreaded needles.
Just mention the possibility of a shot, even now, and my eyes involuntarily well up with tears. I’m 40 years old, people! I should be over this already, right?
Here’s a lovely piece of irony for you. My son, Lucas, was recently diagnosed with a peanut allergy. The diagnosis followed a very scary dash to the emergency room after he shared a bite of a peanut trail mix bar with someone – I won’t mention names – who is not me, but who is also Lucas’ parent. I know, I know… it could have just as easily been me.
So, here’s where the irony kicks in. I now have to carry an Epi-pen at all times. As we all know, this is a shot I have to administer to keep my child from dying, should he ingest a bit of peanut. I squirmed my way through an explanation by the allergist of how and when to use it last month.
Then we had to see the nurse, who had us practice on ourselves with a needle-free cartridge. As I sat there squirming, with tears falling down my cheeks as quickly as I could wipe them, the nurse looked at me blankly and said, “You’re not good with needles, are you?” She added that the needle is pretty thick, like a sewing needle, and it’s long, too! Heartless woman.
And if I have to use it, God forbid, then in addition to jabbing my poor little child with a long, thick needle, I have to hold it there for ten seconds and then pull the whole, long thing out. No, it doesn’t retract on its own.
I know, I should be thankful that we found out now, and that we have the ability to treat him instantly should we have an emergency. And perhaps this is one way for me to finally get over my insane shot phobia, and I could, theoretically, be thankful for that, too. But it’s going to take me some time.
This post was originally published on Alexis's blog on July 8, 2008
Want to share your PA story?
Friday, August 29, 2008
Few things terrify a PA parent more than BBQ's and potlucks. Many I know just won't go. There are too many "what if's" and "what will my peanut allergic child eat?"
I completely understand the fears. I have them from time to time, as well. For our family, however, potlucks are a regular part of our life. My husband is a pastor and we have them monthly at church. Not going is not an option. Can you imagine if the pastor and his family skipped a big church-wide event each month? This would have a very negative effect on my husband's job.
I have developed, however, a bit of a strategy that has always kept Tyler safe and allowed him to eat food he loves and have a good time. Here are a few things I do to keep him safe:
*Make sure the environment is peanut-free. Our church is very concerned about Tyler's peanut allergy and they screen dishes before they allow them to be put out. Of course, I always double check. If you are going to a BBQ or potluck, talk with the person running it and see if they can have a similar policy. If they won't, you will just need to be extremely diligent (i.e. not a lot of chit-chatting with others).
*Bring a "safe" dessert and side dish. I'll admit that I don't always do the side dish thing but it's nice when I do because it gives us several options. Some of the food is cooked at the church so I see if I can read labels. But desserts are what scare me to death. So, when possible, I bring a safe option. When KFC or a large ham are served I usually allow Tyler to eat those.
*Go first in line...even if you have to cut. Even "safe" food isn't safe when goodness knows what has been held over the top of it. The safest "safe" food is before anyone else has touched it.
*Make a potluck bag. This helps us keep Tyler safe in any BBQ or potluck situation. Plus, I sometimes I forget that we are having a potluck so the "potluck bag" is stored in the trunk. Here is a picture of our bag:
Although the contents sometimes vary, right now it has:
*Mac & Cheese bowls: These things are great because all you need is a microwave, water and a spoon (also in the bag). You fill the water to the line in the bowl, zap it, and you have a safe and yummy meal most kids love. I chose this rather than soup since there is no clean-up. Just toss it in the trash when you're done!!
*Cookies: Right now we have individually packs of Oreo's and Lorna Doone cookie we deem safe. I buy them in bulk at a wholesale store so we always have plenty.
*Fruit snacks: I also buy these in bulk. These are something he usually only gets for a special occasion so they are always a hit.
*Goldfish crackers: Another hit with Tyler. What preschooler doesn't love these little guys?
*Wipes: I use these to wipe down an area where I suspect there might have been peanuts (not necessary at church potlucks...thank goodness!). Of course, they also come in handy for my messy children.
These are stored in a small bag (actually an old diaper bag). You will also note there are two of everything. This is in case my other child wants something. I don't want him to feel left out. Plus, they also come in handy when I get scattered brained and forget to refill the bag...
I will admit the options I pack may not be the healthiest in the world. But I don't concern myself so much with nutrition when I know Tyler will see many delicious things he can't have. Instead, I focus on providing him something he likes and will allow him to have a good time, all while keeping him safe.
Thursday, August 28, 2008
My oldest son is in school. Obviously he won’t be eating peanut butter and jelly from home this year, but I’m not sure how paranoid to be when he comes home every day, in case he had exposure to peanuts/peanut products. There will be times when he eats things that have peanuts in them, I’m sure of it. Like, what if he has a peanut butter cookie for dessert with his hot lunch? Do I just make a practice of sending him straight to the bathroom for a wash-down and new clothes every day? I’m just so afraid of the possible contamination, and I don’t know how strict to be, I guess.
Yes, peanut residue is notorious for lingering on skin and clothes. In addition, younger children are not known for their "neat" eating practices. If I were you, I would have him wash up (hands and face, possibly even arms) and put on new clothes when he comes home if he ate something with peanuts.
If he resists, try to make it as fun as possible (fun cartoon soap, some of his favorite clothes, etc) and explain how important it is to protect your daughter. I bet he will get in the habit very quickly with no problem. It's said when it affects the siblings, too. He might even try to stay away from peanuts to keep her safe. My other child is only 21 months so he doesn't understand but I still feel bad for him. Someday he will have to be just as cautious as your little guy.
It is true that a peanut allergy affects the entire family, even the littlest members
Wednesday, August 27, 2008
I admit I had not given this issue much thought until a scare last month. Tyler went to the water park with his dad. He has the fairest skin in the world, not to mention eczema. Quite frankly, I wasn't interested in seeing how he would handle a sunburn. So I put a ton of sunscreen on.
Off hubby and Tyler went. About 30 minutes later, my husband brought him home, saying he was upset because he got sunscreen in his eyes. It was true, his eyes were swollen and red. He was very whiny and said he wanted to go to bed. I laid him on the couch, wanting to make sure I didn't have any other issues going on.
Instinctively, I read the sunscreen ingredients. I did not see the word "peanut" but I did some Googling and saw on the Internet that many sunscreens and lotions do have peanut oil in them.
By this time, Tyler developed an incessant cough and a runny nose. I began to feel like I was dealing with a reaction to something so I gave him Zyretc. About 30 minutes later, his eyes were fine, his coughing and nose issues had stopped. He asked for something to eat so I knew we were back to normal.
To be honest, I'm still not sure what happened that day. Was there an ingredient that had peanut in it but not on the label? Or was there a weird chemical sounding name that actually meant "peanut?" Was it a reaction to something else? I'm not sure.
This led me on a quest around the house to read all the lotions and such that I put on him regularly. I was shocked to discover the Cetaphil lotion I used on him daily for his eczema had macadamia nut oil in it! We are still not sure if he is allergic to tree nuts (long story) but I avoid these at all costs. To think I had been putting nut oil on him after his after bath! Goodness!
This post is not chock full of answers, I'm afraid. I've researched several times on this issue with few results. It's more of a warning to you to read everything that comes into contact with your child, not just food. You just never know where a peanut or tree nut might be hiding!
Tuesday, August 26, 2008
Many companies label for cross contamination by letting us know if the product is processed in a facility with peanuts or on the same equipment as peanuts. This is strictly voluntary on their part. If you read a label and it does not have a cross contamination warning, it does not mean that it might not have occurred.
On September 16, the FDA is holding a hearing about developing a strategy for manufacturers to have a uniform allergy advisory labeling process.
What does this mean? On one level, it means those who do label simply need to agree on what language to use under what circumstances. As it stands now, companies put whatever they deem appropriate (if anything).
Another layer of these hearings involve the usefulness of these labels for those who read them. Here is what they say:
The FDA is soliciting comments and information to assist the agency in determining how manufacturers currently use advisory labeling, how consumers interpret different advisory labeling statements, and what wording is likely to be most effective in communicating to consumers the likelihood that an allergen may be present in a food. The agency is also interested in receiving comments about whether consumers find advisory labeling helpful for making purchasing decisions.
OK, this is where we come in. They want to know how useful these labels are. What wording is best? What will ultimately help us keep our PA kids safe?
Standing by to see what happens in these hearings is not enough for me. I wrote a letter to the FDA stating what my preferences are. Since this is not a formal letter but more of a "comment," I'm sending, I tried to make it short but to the point:
I would like to strongly encourage the FDA to adopt a policy that requires all manufacturers to label their products with an allergen warning if a food could possibly have a microscopic trace of a major allergen, such as peanuts.
I have a 3 three year old son who has a life-threatening peanut allergy. Even one of these microscopic traces of a peanut could kill him. His life depends on my ability to know if there could be a microscopic amount of a peanut in something he consumes.
The Food Allergen Labeling and Consumer Protection Act (FALCPA) that was passed is helpful in my quest to keep my son from consuming something that a manufacturer has added peanuts as an ingredient. However, this does not account for the traces that can be present in his food simply because it is processed on the same lines as a product containing peanuts or even in the same facility as peanuts, where the nut’s dust could settle onto a “peanut free” food.
As a result, if a company chooses to not label for such things, I must do further research beyond the FALCPA required label to ensure its safety for my son. This includes contacting companies and doing online research to uncover a company’s policies regarding labeling and food processing practices. This is not always easy, as many companies are not forth coming about their processing practices.
Requiring companies to label that something is processed in the same facility as peanuts would help me tremendously in my daily quest to keep my son safe. At a bare minimum, if the label could at least read whether the food is processed on the same lines as peanuts, I can assure you it would make my job protecting my son much, much easier.
Thank you for willingness to listen to a parent regarding these matters. I will be eagerly anticipating the results of these hearings.
I encourage you to let the FDA know how you feel. Many manufacturers will most likely be lobbying for less labeling since it will mean less work for them and a possible loss of business. We are our children's advocates. We need to let the FDA know how labeling practices can mean life or death for our children.
I encourage you to submit a similar comment to the FDA. Please feel free to plagiarize my letter as much as you want. It might seem a little intimidating to write the FDA but we can't be silent right now while we are on the verge of such big decisions.
*To educate yourself more fully on this issue, here is the complete document about the hearings that the FDA published last week.
*When your letter is ready for submission, you can submit your comment to the FDA here. I promise, this was super easy. Plus, I feel kinda cool knowing I wrote the FDA on Tyler's behalf!
I really hope my readers will contribute. I know everyone that reads this blog has been touched by PA in some respect. Most of you are parents and the "label readers" in your home.
If you do submit a comment to the FDA, I would love to know. Leave me a comment or send me an e-mail. We really are all on this journey together, aren't we?
Monday, August 25, 2008
She was super nice and it was a little surreal to ask her about her son that I read so much about in the book. She also extended a special offer to my readers for her new cookbook (just released last week) called "What Else is to Eat? The Dairy-, Egg-, and Nut-Free Food Allergy Cookbook." Here is what she said about it:
“What Else is to Eat?” features recipes for foods that everyone can enjoy, whether they have food allergies or not. Main dishes, side dishes, breakfast foods, and baked goods are all included. With an emphasis on fast and easy recipes that use “normal,” easy-to-find ingredients, this book is designed for today’s busy lifestyles.
Here is the special offer: If you order before August 31, you can get FREE priority shipping in the US. Visit http://www.foodallergybooks.com/order.htm and mention coupon code CB2B.
Not only is Linda a great author, she's a super nice lady. Plus, she's a PA parent, just like us!
Linda Coss was that mom in 1991. Instead of accepting a lack of understanding of her son Jason's multiple life-threatening food allergies, she wrote a book to help the rest of us navigate the scary world that food becomes after diagnosis.
After reading "How To Manage Your Child's Life-Threatening Food Allergy," if I were an allergist, I would hand it out to all patients who were diagnosed this condition. If insurance wouldn't cover it, I would take it out of my pocket. It's just that good and is written on a level that even a newbie on this journey comes away feeling very educated.
It includes an in-depth on the the following issues : handling severe reactions, teaching others about your child's allergy, cooking, shopping, parenting, socializing inside and outside of the home, eating out, traveling, school (including preschool, daycare, and extracurricular activities), and support groups.
I will admit that, even though I have been living with PA for 2.5 years, I learned a lot from this book. There is never an end to what you can learn about food allergies. So, if you are like me, and know a fair about food allergies but are always open to learning more, this book is great. She is a mom like myself that tries to think through every aspect where her child could encounter a dangerous situation and offers a reasonable solution.
This book is great if you are dealing with multiple food allergies, as well. The author's son is allergic to peanuts, tree nuts, eggs, and eventually outgrew a milk allergy. Egg and particularly milk allergies present unique challenges that our family knows first hand since Tyler outgrew these early this year. When you are dodging so many things, sometimes it feels like your child only eat a couple of things. She offers many fun and unique ideas to add variety to your child's diet.
Since peanuts (and tree nuts) are the scariest (or at least that is how I felt when I dealt with multiple food allergies), this book is excellent to help you manage your child's food allergies. If you are new to PA, you simply have to read this book. Not only will it educate you now, it will be a great reference for later, as well as a good resource to give to others who want to fully understand your child's peanut allergy.
(Purchasing this book or other products on Amazon through this blog help support it.)
To read other items I have reviewed, click here.
Sunday, August 24, 2008
Some other general thoughts about eating ice cream: If the ice cream is not from your house, do NOT eat from a previously open container. This is important in restaurants, too. Ghirardelli's Ice Cream Parlor was happy to provide an ingredient listing of everything in their restaurant (it's in a huge binder) and they opened a new container of ice cream and used a new scooper. This is becoming standard operating procedure in many eateries.
I could talk about this for much, much longer! I can't stress how important the no-previously-open-container rule is for condiments, too. Do NOT eat jam or jelly from an open container from anywhere. Many, MANY people dip their PB knife into the jelly.
I felt this was worth highlighting today because I know I have so many readers new to the peanut allergy life. Even though we have lived this life a while, my husband even commented on the wisdom in this comment, particularly about the jelly.
We never allow Tyler to eat ice cream at a store because of what the scooper was dipped in last and what residue could be left behind. During graduate school, I worked in an ice cream store one summer. I never even heard the term "cross contamination" back then so no one was taking any precautions. We sometimes rinsed those dippers in between dips. Sadly, I doubt much has changed in the last 9 years.
However, Ann's comment about an ice cream she feels is safe (by the way, another reader told me Ghirardelli's has good labeling practices), asking for a fresh container and a throughly scrubbed scooper might well be in some people's comfort levels. We don't have Ghirardelli's here but I might even consider it if I felt they understood and were taking all precautions.
Another thing she mentions is "safe" ice cream at someone else's house. If you are like me and deem a few store bought ones "safe," you should still avoid an open container at friends' or family's house simply because they might have used the same dipper for "safe" ice cream right after they dipped in a nut ice cream.
The same goes for any open container, like she said, where peanuts could be hiding. I've never been a jelly fan so I never ate that on my peanut butter sandwiches. My husband, who lived on them before we married, said he never used a separate knife. I would assume most people do not. You could take this further, really. Where do you think someone could use the same knife, spoon, etc after getting something with nuts?
I don't want those of you new to PA to become overly paranoid about eating at another person's house, but it is vital to think through issues like these before visiting. Call ahead and get the menu, throughly think through each aspect of what could happen in the kitchen, and take some "safe" substitutes as you deem necessary.
Saturday, August 23, 2008
If you would like to share your PA story on "Peanut Allergy Kid," I want to hear from you!! If there is interest, I would like to devote a day a week to your stories on the blog for the next several weeks. I know many of you will want to share the story of how you were reluctantly initiated into the peanut allergy club (i.e. your child's first reaction).
Other topics could include:
*Lessons learned that you hope no one ever has to repeat.
*Fears that you have as a parent of a PA Kid.
*Positive things with your child, your family, etc. that the allergy has brought.
*An older PA kid might want to write a paragraph or so on their own experience.
Whatever you want to share with other PA parents, here is your platform. This will give you an opportunity to write it down and possibly direct family and friends to the site that might not have heard your entire story before. In addition, when they visit the site, they might be inspired to learn more about this life-threatening allergy. Isn't that what we all want for those who are in our children's lives?
You can be named anonymously as "a reader" or I can give your first name. If you have a blog, I will be happy to link to it, as well. You can also provide a picture of your PA kid , if you want. If writing isn't your favorite thing, write it and I will help you polish it up. This is about your PA kid and the impact this allergy has had on you and your family.
Please limit the posts to 650 words and e-mail them to peanutallergykid AT gmail DOT com. Please indicate that your e-mail is for a posting on the site.
I look forward to hearing from you!!
Friday, August 22, 2008
So, when I received this question for a reader, I thought it is an issue really all parents of PA kids should be thinking about, even while we are still dipping our toes in the swimming pool. We can re-visit the issue in October, too.
Hey Robyn,This is a great question and one that has been on my mind lately. Since we were dealing with a milk and egg allergy last year, we knew Halloween was a "no go" for us. And, the more I have contemplated the coming Halloween, I do not feel comfortable at all with Tyler trick or treating. The main reason it bothers me is the residue from other candy that isn't sealed well (such as Reece's peanut butter cups) that can get everywhere. That could be transferred to Tyler's hands and then to his mouth. So, no way!!
I was wondering how you handle Halloween?
According to "How To Manage Your Child's Life-Threatening Food Allergies" (review of this book coming next week), the author recommends the following things:
1.) Stay home: Allow your child to distribute "safe" candy at your home.
2.) Distribute safe candy to your neighbors: Secretly go around to your neighbors and explain your situation and only trick or treat at those houses.
3.) Go trick or treating and sort out the safe candy from the unsafe: I don't like this option at all. Not one bit!
4.) Throw a Halloween party instead
We will be doing #1 like we did last year. Tyler absolutely loved watching all the costumed children come to our door. He also help distribute the candy. It never occurred to him that he should be out there. I know one day that will happen. When it does, I think an explanation of the dangers will probably suffice. He's a very smart kid and understands his allergy very well. When that day comes, I like the idea of option #4. Maybe we could do the prep work while others are trick or treating and then have the party after most of the trick or treating is done and his friends can come over. Also, I plan on buying costumes for both of my boys this year so that they still get to participate in that part.
When my youngest child is old enough to understand that he should be out trick or treating (probably another year or two), I think Tyler will be old enough to understand the difference and an explanation of why Dylan is out and he cannot should be enough for him. Of course, I will give Tyler plenty of safe candy so he doesn't feel left out at all.
Halloween is all about traditions. There is no law that says you can't create even more fun ones than going door to door begging neighbors for candy.
Thursday, August 21, 2008
I really wasn't sure how to answer this question until this week. In addition to a peanut allergy, Tyler also has a condition known as "hypotonia" (weak muscle tone). This has affected his speech to a certain degree.
When he completed speech therapy preschool (this was a class that required parent attendance so he was never away from me), his speech therapist told me it was vitally important to enroll him in preschool next year so his speech could continue to develop. I intended to enroll him in our school district's preschool since I knew they had peanut policies. The problem has become, according to his pediatrician, the muscular condition makes potty training impossible for him at this age. No amount of working with him has helped. And the preschool I pre-enrolled him said he must be potty trained.
So, I was back to square one on preschool. I didn't feel comfortable looking in the phone book and calling random daycares to see about their peanut policies. Would they be honest if they really didn't understand?
Then I met another mom with a PA son. I told her my quandary and that I had just decided to not do preschool until he was potty trained, saying I felt his safety was more important than his speech. She told me about the daycare her son attended and how wonderful they were with his peanut allergy. Still a little skeptical, I called. The woman on the phone seemed to understand how to mange PA completely.
On Tuesday we toured the facility and we were very, very impressed. The woman (one of the owners) talked in depth to me about how they manage their multiple food allergies. Here are a few of the highlights that makes me feel comfortable sending Tyler there:
* They have never had a peanut reaction even though they do have a few peanut allergic children, including one who has airborne reactions.
* They are nut free. (The only exception is if a school age child brought a PB lunch. This would not be eaten at the daycare, only taken to school with the child. Tyler would not be in the school age area so this is not a big concern.)
* EpiPen administration is part of their required annual first aid training. Every teacher knows how to do it.
*In each classroom they have a list of children with food allergies. Each child’s allergies are listed by a picture of them. They have the same list in the kitchen.
* She talked about being nervous in certain situations where she has called parents to double check. I told her the fact she gets nervous at times (just like I do!) actually made me feel good.
* They will allow me to bring “safe snacks” if I want to. I want to talk with the cook before I decide if I will do this. I hope he can eat what other children eat.
*They want a separate EpiPen just for their school so there is never a possibility I might forget it. This, I felt, was a great precaution.
In the end, we have decided to send Tyler to this daycare for their preschool program. I'll admit it still makes me a little nervous. The facility is less than 5 minute from the house so that is something else that makes me feel like I am never too far away. I'm sure I'll be back posting about the preschool once he starts September 2...
Wednesday, August 20, 2008
Then, moments after finishing his pudding, his voice changed. All of the sudden, he was completely stopped up. He was complaining of a sore throat. I was a little alarmed but did not see any swelling or anything else that would indicate an allergic reaction. Still, I gave him a dose of Benadryl and laid him on the couch to watch him. I called my husband to alert him to a possible reaction. I never got overly worried since it seemed so mild but I also wasn't letting him out of my sight.
About an hour later, he seemed fine. He was back up playing and his voice had cleared up. I thought maybe it was indeed a mild reaction. Then I touched him. He was burning up!! I took his temperature only to see it was 101.4. For once, I was actually happy to see he had a fever. This was certainly better than the alternative. By the end of nap time, my other child had 101 temperature, too.
I was probably the happiest mom around to have two sick kids. But, I would certainly rather deal with two colds than one peanut reaction any day. For me, the uncertainty of his PA is what scares me. Something as simple as a cold coming on so quick can let your mind leap to scary, scary places.
Tuesday, August 19, 2008
I did research over on peanutallergy.com's boards to see how other parents handle this dilemma. What I found was a little shocking and reminded me that investigating each food he eats is super important.
I read posts from a few people that said that there are no ice cream lines in the US that are dedicated to nut-free ice creams. If this is true, it means that even things we think are "safe" are running on lines that have had nuts on them previously. Many parents do not allow their children to eat store bought ice cream. I completely understand this logic. Totally.
However, I wondered if there was anything that I might feel comfortable with so that Tyler can have this sweet treat on occasion. My mission is first and foremost to protect him. But I also feel it is very important to give him as many "normal" children things as possible. In the end, I found 2 store bought ice creams I feel comfortable with. This is only what our family has chosen. Your comfort level may be totally different and I don't fault you one bit for that.
*Breyer's Ice Cream: I feel safe with this ice cream because Tyler has been eating it for a while and has had zero problems. Many, many others on the PA boards said the same thing. Here is what the Breyer's website states:
We also have special handling procedures for all allergenic ingredients used in our manufacturing facilities. Unilever Ice Cream/Good Humor-Breyers does not have dedicated production lines in our factories for product containing allergens. However, we do have a very strict allergen-handling policy. If there is an allergen concern on a manufacturing line, the machine is disassembled and thoroughly cleaned. This process takes several hours. Our historical results and process verification testing for allergens has shown that these steps are effective at removing allergenic proteins.
I realize this is probably out of some people's comfort zones but my husband and I decided that the fact they thoroughly clean their machinery and even do testing to make sure the equipment is clean, plus so many people reported zero problems with it over several years made it OK for us. Again, everyone has a different comfort level.
*Ben and Jerry's Ice Cream: My husband is addicted to this stuff. Many times I've seen a "May contains" labeling and didn't let Tyler have it. Then, last week he brought one home without a warning and I was confused. With the help of another reader (thanks P.C.!!), I found this information on their website:
Our policies and procedures are such that if peanuts or tree nuts (almonds, cashews, chestnuts, walnuts, pistachios, pecans, hazelnuts/filberts, macadamias, Brazil nuts, pine nuts) as well as eggs, milk, fish, shellfish, wheat, soy, seeds, and lupin are not listed in the ingredient declaration or in an Allergy Information statement in boldface on the package, then the product is safe to consume for persons with allergies to those ingredients.If you visit the above link you will also see they are members of he Food Allergy Network and the Food Allergy Resource and Research Program. I think they are very educated and wouldn't bind themselves legally to the above statement if they were not truly safe for those with a peanut allergy. Again, this is what we have determined is in our family's comfort level. Your family may be totally different.
*Another note of interest to those of you who deal with a dairy allergy (you have my absolute sympathy...we've been there), a friend of mine allows her PA and DA son to eat Tofutti Ice Cream because they have practices to flush the lines and to run on separate days.
I would love to hear from others on this issue. Do you allow your PA Kid to eat other ice creams? If so, how did you determine their safety?
Top photo courtesy of Microsoft
Monday, August 18, 2008
I have a question for you. I have been buying hoodsie icecream as there is nothing in the ingredients about nuts BUT on their website it states
"We have an allergen control program in our ice cream plant. However, we do NOT have a dedicated line for nut containing products."
So I wrote to them and said:
I buy hoodsies because there is no reference on the labels to potential nut contamination from the prodution line ……….
Hoodsie cups are made on their own line, however, they are made in a facility containing peanuts and treenuts. We label our ice cream in accordance with FDA guidelines.
My concern is that I have been avoiding products made in the same facility as nuts and now I don’t know what to go by. I can not see in the FDA guidelines that they must report this. I know the chocolate factory’s report it and until now I thought all other production facilities reported the same way.
Do you buy things made in the same facility as nuts if it is reported on the label. The chocolate factories told me there is a very slim chance of cross contamination but they report it none the less and I have not bought those items.
I am trying to settle into a normal life with this but some of these things are driving me crazy. I am becoming obsessed with food labels!!!
(Below is how I responded to this reader when I received the question on Saturday night. But, after the response I gave her, it made me re-think my own comfort zone, particularly when it comes to ice cream. I did research on ice cream brands and will post more on that tomorrow.)
I totally understand your concern. No, I do not knowingly give Tyler things processed in a facility with nuts. There were studies done and there is a 7%-25% chance (based on which study you read) that something processed with nuts could contain them. That is small, but I'm not willing to risk it.
Many people call or email companies before they allow their child to eat a particular item and I am considering doing this as I tighten my own comfort level. What I have been doing (and we have had no reactions) is I look at a particular brand and see if they have a history of labeling for "processed in a facility." For example, I buy a lot of Wal-Mart generics. They label for EVERYTHING. Many times their "processed in a facility with..." is 7 or 8 allergens long. So I know that Wal-Mart gets it. In my experience, many of the bigger companies do label for cross-contamination. If I am unsure, I won't give it to Tyler until I see they have a history of labeling like I talked about.
Some companies do an allergen wash if they do not have dedicated lines. This is where they completely wash the lines to remove allergens. An example of this is Chips Ahoy. I haven't let Tyler eat that because it makes me a little uncomfortable. Yes, they clean their lines but they still process nuts in the facility. This is not noted on the label.
Another thing you can do instead of contacting the companies is to go to peanutallergy.com's boards and do a search on a particular food. If it's a major brand, chances are someone has already posted about it. That's how I found out about Chips Ahoy.
I've never heard of the brand of ice cream you are talking about, but based on their response that they only do the bare minimum that is required by the FDA would make me want to stay away from them. Not only is there a safety issue, I prefer to buy from companies that are truly concerned about their customer's food allergies, not just get by with the least of amount of trouble for them.
It's easy to get obsessed with labels. It can actually be a good thing. I consider myself a label fanatic, too. I've already talked about how labels can change in a previous post. So reading the label every time (even if you're called "obsessed" by some) is very, very important. For me, it's just another act of love I do for my PA Kid!
Sunday, August 17, 2008
Although Aaron lives with a severe dairy allergy, the effect of living with any life-threatening food allergy are virtually the same on a child, no matter what the offending food is. Here is the essay that won him the "Good Ambassador" role for the Walk.
Hi, my name is Aaron Sanders. I am going to tell you about my food allergy and how it affects me.
First, I have a severe dairy allergy. I was allergic to eggs when I was younger. But I outgrew my egg allergy and eat lots of eggs now.
I have had my dairy allergy since I was born. I have reactions when I eat anything with dairy in it. I can even react when I inhale things like powdered milk or Parmesan cheese. When I was little my reactions would make me stuffy and sneeze all the time, cough and throw up. That's when my Mom & Dad took me to a special doctor. He did some tests and told us I was allergic to milk. Now I carry two different kinds of medicine in a bag with me wherever I go.
My Mom & Dad learned about all the things that can have milk in them and didn't let me have any of it. I didn't have a reaction for a very long time. When I was 5 years old I did a food challenge where I ate just a little bit of cheese. It didn't make me stuffy or sneeze. We were so happy because we thought I had outgrown my dairy allergy too. But by the time we got home I didn't feel so good. I got red from hives all over my body and wanted to throw up. I had anaphylaxis so the ambulance took me to the hospital.
It was really scary to go to Kindergarten right after my bad reaction. I didn't have fun in school when the teacher and other kids had food that wasn't safe for me. The teacher would sit me out if I couldn't participate in the activities with the other kids. It makes me sad when I can't have fun when other kids are doing something fun. When I was in school it did not go well and I didn't want to go back after I graduated from Kindergarten.
I would be a good Ambassador because I know a lot about food allergies. I can help people learn about food allergies by talking about it like Trace does. I would tell kids with food allergies to let their friends know how they can help keep them safe. I would tell adults that people with food allergies have to avoid some foods but otherwise we are just like anybody else. Everybody needs to know about food allergies so we all can be safe. Especially us kids because we depend on adults to help us.
(Here is the entire article I took this essay from)
Saturday, August 16, 2008
If you are within driving distance of any of these locations, I encourage you to walk, even if you can’t afford to donate anything. The ability to connect with other parents that have children with life threatening food allergies is worth it. Plus, meeting other children with PA and other life-threatening food allergies is great for PA kids. In a world when they feel like they are the minority, at the FAAN walk, they will be the majority.
Check out the “Peanut Allergy Kid” FAAN Walk page. If you are in the Detroit area and want to join us, click on "Join My Team." If you are unable to walk but still want to donate to the fund raising efforts, you can click on “Support Me” to contribute to our team, if you would like.
Friday, August 15, 2008
In early May of this year, Dr. Wesley Burks of Duke University made an outstanding statement regarding a possible treatment for this life-threatening condition:
"I think there's some type of immunotherapy that will be available in five years."I couldn't help but jump for joy when I read that statement for the first time!!
This is a treatment for the peanut allergy, not a cure. It is expected to eliminate the dangers of cross contamination and other "accidental" ingestion. This does not mean that Tyler (or any other PA kid) can sit down and eat a couple of PB&J's. It means that if there is a microscopic speck of a peanut in something he eats or if a bite is accidentally taken of a peanut butter cookie, the results won't be life threatening.
What My Allergists Said
I asked our former allergist about this and she said has faith in these studies and believes there will be a treatment (remember, not a cure) in Tyler's lifetime. Great news!!
On Wednesday I asked our new allergist and his response was even more encouraging. He said these treatments "make a lot of sense." He also said he is very confident there will be a treatment in five years. In fact, he told me he has even spoken with Dr. Burks nurse about the research.
I was even more excited when he told me what hospital he would use to administer the treatments once the FDA approves them. To me, stating what hospital the treatments will be administered in, shows an absolute ton of confidence in these treatments and the fact that they are truly coming.
So, What About the Research?
There is a blog called "Ask About My Peanut Allergy" that is following a six year old boy named Bo that is currently in this research study. His parents offer great hope of what they are seeing in other kids that have been in the program for a while.
According to this blog, children in this study eat a small amount of peanut flour each day, with that amount increasing every two weeks (the initial dose and each time the dose is increased, the child is in a hospital setting). Over the course of a year or two, children that once reacted to 1/100 of a peanut are tolerating up to 13 peanuts with no reaction!!
Don't take my word for all of this, I urge you to become a regular reader of "Ask About My Peanut Allergy." It offers a hope like nothing else I have ever read on PA.
Medical research happens all the time and nothing comes of it. But now that I have had two allergists tell me in the last six weeks that there is indeed hope and almost certainly a treatment coming, I get so excited. The thought that Tyler might be able to take a bite out of something without reading the ingredients or talking to the chef is something I hope to see someday soon.
**I am a big believer in the power of prayer. I have made a commitment to pray for Dr. Burks' research everyday until it is available to everyone. I encourage you, if you also believe in prayer, to do the same. I can't think of very many things in the life of a PA child (or adult) that is more important.**
Thursday, August 14, 2008
I was expecting one of the most positive doctor experiences in my life, based on what I had heard about this man. I was not let down. He came in, introduced himself, and told me he remembered our phone conversation last week. We went over some background information and talked more in detail about our June 30 experience with our last allergist that sent us to the ER. This man oozed competency and compassion. I can't think of anything more I could ask in an allergist.
Our former allergist based everything on blood work. In most situations, that is acceptable. But there is the rare case, like Tyler's, where blood work shows no allergy and there is one. He told me he always does a skin test in the case of a negative on blood work. In his 19 years of practice he has had 3 patients that had a serious reaction to peanuts at home, were brought in to see him, and had a negative for peanut allergy on the blood work. This, of course, did not mean there was no allergy. He did a skin test and in each instance the skin test was positive.
I have requested since the beginning of the year that Tyler be tested for tree nuts since he has two cousins that are allergic. Something has always prevented it. I avoid these but it would be nice to know. The new doctor wants to wait a little longer since Tyler had such a negative experience this year. He is very concerned about traumatizing him even more. I really appreciate his concern over Tyler's emotional health, as well. In the end, a positive on those tests will change very little of what we do anyway.
I have been concerned about my younger child, Dylan. I don't mention him much on this blog because I hope he does not have a peanut allergy. I don't plan to ever give him any nuts (even if he's not allergic) but it would be nice to know if he needs an EpiPen with him, as well. Since tree nuts also runs in our family, the doctor agreed we need to test him for all nuts to put all of our minds at ease. He wants to wait until he is 2 this fall. I'm glad he didn't think my "nervous mom" syndrome was misplaced. I hate to put Dylan through the blood work and skin tests but we will all be better off in the end.
As I sat in the waiting room, I was reminded that a peanut allergy is not the worst thing that could happen. A little boy Tyler's age sat by us. His mother had five pages of food he was allergic to (including peanuts). In fact, this poor little guy is allergic to nearly every food. Feeding him is a matter of determining what he is less allergic to. I gave her my sympathies and said a silent prayer of thankfulness that we are now only dealing with one allergy (we used to deal with milk and egg until early this year). I can't imagine dealing with 5 pages!!
In the end, I asked the doctor about possible treatments that I am hearing about for those allergic to peanuts. He gave me some very positive information. Since I have not written about what researchers are saying about this, I will save that (and what our doctor said) for tomorrow. There is a lot to say on this issue.
In the end, Tyler and I both feel better in the office of an allergist. He never questioned if he would be given peanuts, a shot, or a trip to the hospital (like he did with our former). I can't speak highly enough of this man that has really dedicated himself to helping moms like me keep their kids safe and healthy.
(**If you live in the metro-Detroit area and would like more information on our new doctor, please e-mail me and I will give you his name and the locations of his 2 offices.)
Wednesday, August 13, 2008
"I was doing a radio-show interview the other day, and a listener called in and said, 'I was told that I couldn't bring something into my kids' school because other kids were allergic, and that's infringing on my freedoms.' I thought, 'You idiot. Bring something else. Are you seriously suggesting that you should have the freedom to kill my kid?'"
Makes me laugh every time!! Sometimes celebrities say the things the rest of us only think!!
Tuesday, August 12, 2008
Our 3 year old son has just been diagnosed with severe peanut and tree nut allergy. I am aware of many of the hidden dangers including "natural flavors." My question is do you avoid these products or does it depend on the product... I am fairly confident in all other aspects except for this one. So far I have relied on the manufacturer's warnings that nuts have been used.
Thanks for this question on the "natural flavorings" we often see on those ingredients list. Many people new this game of PA don't stop to realize something as innocent as a "natural flavor" could contain something harmful.
Yes, I completely rely on the a labeled warning to let me know if that flavoring contains peanuts. The reason is due to the The Food Allergen Labeling and Consumer Protection Act (FALCPA) of 2006. In reading this, it states:
...that foods containing milk, eggs, fish, crustacean shellfish, peanuts, tree nuts, wheat, and soy must declare the food in plain language on the ingredient list or via:
* the word "Contains" followed by the name of the major food allergen (milk, wheat, or eggs for example); or
* a parenthetical statement in the list of ingredients, e.g., "albumin (egg)".
Such ingredients must be listed even if they are present in colors, flavors, or spice blends. Additionally, manufacturers must list the specific nut or seafood that is used (e.g., almond, walnut, cashew; or tuna, salmon, shrimp, or lobster). While more than 160 foods have been identified as causing allergic reactions, the eight foods listed above cause 90% of food-allergic reactions.
If you are not familiar with this law, I encourage you to click the link above and read it. It really does make our lives as parents of a PA kids a whole lot easier. This law went into effect six weeks before Tyler's diagnosis. I am so thankful our government is trying to make it easier for us to keep our children safe. I think in future years we will see more and more laws aimed to help us give our children a safer eating environment.
Monday, August 11, 2008
"The Peanut-Free Cafe" shares the story of Grant, a new child at Nutley School, that is severely allergic to peanuts. He and his mother are rather surprised to learn that everyone eats peanut butter for lunch at Nutley School. When offered a bite, Grant explains to his new friends that even a little bit of a peanut can make Grant so sick that he has to get a shot when his airway becomes compromised. The kids, particularly a boy named Simon, are alarmed that peanut butter could make anyone so sick.
Mrs. Filbert, the principle, debates about the safest way to keep Grant safe but still allow the other children to eat their favorite lunch. She settles on sitting up a peanut-free table in another room. Unfortunately Grant sits alone at the table the first few days. Mrs. Filbert is very upset until Simon suggests that they make the peanut-free table a fun place to sit. Mrs. Filbert whole-heartedly agrees.
The next day, children file into the now termed "Peanut-Free Cafe" to eat their peanutless lunches and watch one of their favorite movies. Only two boys aren't willing to give up their peanut lunches, Simon and Paul. The next day, however, Paul wants to watch the movie and opts for pizza instead. This leaves Simon alone with his peanut butter sandwich. Finally, peer pressure gets the best of him and he, too, joins The Peanut Free Cafe minus his normal peanut butter.
This book was an excellent conversation starter for Tyler and me. We talked about how peanut butter makes him sick but how some people can eat it. My favorite part of the whole book was when Grant pulled his EpiPen out to show the other children. Tyler got very excited and said, "Look! An Epi shot!" He was excited to see a character in a book needed one, just like him. After that, he was very engaged. If the peanut allergic child, Grant, was not on a particular page, he inquired where he was. Seeing Grant with an EpiPen made Tyler truly love that character.
This book is for children ages 4-8 and I agree with that age designation. Tyler will not be four until January but I felt he could handle the material due to the fact that his reaction on June 30 was to peanut butter. As a result, the message really resonated with him. Before his reaction, he did not understand his allergy. The constant mention of peanut butter and many child eating it might have actually made it look appetizing to him. That would be very counter-productive.
I recommend this book to an older preschooler or above, unless like Tyler, your child had a recent reaction to peanut butter and fully understands what the reaction was a result of.
More than anything, this book starts conversations. It allowed Tyler and I to talk about it without him feeling like Mom was lecturing. It would also be an excellent book for children who don't have a peanut allergy but have a friend or family member who does. It would help them understand that, although they can eat peanut butter, other children can become very ill from it.
I highly recommend this book to reinforce what you and your PA Kid have already discussed. It's important they understand others can eat peanut butter but are also willing to make accommodations to keep them safe.
If you are interested in purchasing this book, please click the link above. A small portion of the proceeds will help support this blog.
Sunday, August 10, 2008
After further research and thought, I now no longer feel this is safe. The reason is because the distance between the cookies and the sandwich prep area is too small. This can (and certainly does) lead to a worker grabbing a peanut butter cookie and then returning the sandwich prep area with the same gloves on. Of course this is still "sanitary" but the "peanutty" glove will then enter the lettuce, bread, meats, and cheese areas. These peanut crumbs have the potential to spread all over the prep area, causing it to be very unsafe for a PA kid.
There is good news however. A reader gave me this link to Cici's Pizza. Here is what their website says, "None of our products contain peanuts, peanut oil or are processed in a plant that processes nuts." Yeah! This is probably the only buffet I will ever endorse. I'm not a big fan of Cici's personally (I lived on it in grad school when I could eat for under $3) but I have to admit it is tempting to add this to our restaurant rotation just so Tyler gets to experience a buffet. (Buffets scare me, check out this post to see why)
Saturday, August 9, 2008
Earlier this week I received an e-mail from a mom that not only thanked me for the blog but also told me her 10 year old daughter enjoyed it, too! I had never even thought about a child reading it. It knocked my socks off!! I couldn't let this opportunity pass by without getting this sweet girl's perspective on her allergy.
She knows more about PA than I ever could. I find it fascinating to see this allergy from a child's perspective. So without further ado, let me introduce you to 10 year old Gretchen from the Northwest. I've already told this sweetie she is my hero. Now you can see why.
PAK: How old were you when your family found out you had a peanut allergy?
Gretchen: I was two years old. I had a bite of a peanut butter cracker and broke out in hives. Dad drove to the hospital. Mom gave me benadryl. After that an Allergist confirmed I had a peanut allergy by skin test.
PAK: Do your friends understand your allergy?
Gretchen: Some do. The people I don’t really hang around usually don’t understand.
PAK: Do you have any other friends with a peanut allergy?
Gretchen: Yes I have one friend with a serious sesame, sunflower, and peanut allergy.
PAK: Do you have any special accommodations at school or elsewhere for your allergy? If so, what?
Gretchen: I have a peanut free lunch table and the classroom is peanut free.
PAK: What is the worst thing about having a peanut allergy?
Gretchen: Not being able to go to a lot of restaurants.
PAK: How do you carry your medicines like your EpiPens and Benadryl?
Gretchen: I carry my medicine in a fanny pack at all times. ( Not at home. )
PAK: If you could live one day without a peanut allergy, what would you do and/or eat during that day?
Gretchen: I would want to go to The Rock it’s a pizza place, but they can’t guarantee its safe.
PAK: Anything else to share with our readers today?
Gretchen: I am happy I have a wonderful mom and dad who keep me safe. I appreciate it a lot.
Pretty incredible, isn't she? There is a maturity in a child that lives with a life-threatening food allergy that amazes and encourages me as a Mom.
Thanks for joining us Gretchen and letting us moms (and dads) get a peek into your perspective of living with your peanut allergy.
(**Readers - If you have time, please leave a comment thanking Gretchen for talking to us. If you don't know how, just click on the "Comments" button below. If you don't have a blogger account, select "anonymous" at the bottom. If you receive this by e-mail, click here to visit the blog and leave a comment.)
Friday, August 8, 2008
What I wish I had known when we were diagnosed:
1.) Read the labels EVERY TIME. Things change in manufacturing facilities and what may have been safe one day may not be the next. Reading a label even when I have bought a product a million times is crucial.
2.) Get Educated. When I first started digging around to learn more when we were first diagnosed, it scared me to death and I couldn't read it. Now that I've been living with PA for a while, I read everything I can get my hands on. Even the "scary stuff" is beneficial to learn something from. Education has allowed my "Mommy instincts" to develop more fully.
3.) Get a Medic Alert Bracelet. When he was still a baby, I did not see the necessity in this. Now that we have one, however, I wish I had done it from day one. Tyler's bracelet identifies his allergy and give directions in the event of an emergency. It reminds those around him of his allergy and what to do and also sparks conversation of those who are not familiar with his problem.
4.) Develop an Emergency Plan. This helps everyone in his life know what to watch for and what to do if it happens. Plus, it makes me feel a lot better about leaving him in the care of others.
5.) Have a peanut free home. A child needs one place they can go and feel completely safe. Home should be a place where they know there is no danger of peanuts or peanut residue harming them. It's the one place they can completely let their guard down and be a kid!
6.) Some children react if they are in the same room with peanuts. While we have never had this issue, I think it is due to the fact I simply don't allow Tyler in the same room as peanuts. I've read numerous instances of children becoming very ill if someone is simply sitting across the room eating a PB & J.
7.) My husband and I are peanut free even if we are away from Tyler. Even a microscopic speck of a peanut can cause a reaction. So, in the somewhat rare instance that we are away from Tyler, we don't eat peanuts. The residue left on our skin or clothes could pose a harm to him. Even though we both love peanuts, we love Tyler more.
8.) Grief is normal in the beginning. I was a little surprised at how hard I took the news initially. But gradually, like anything traumatic, it gets easier with time. Allow the grief process to work itself out without being totally consumed and depressed by the allergy. You control the allergy, not the other way around.
Thursday, August 7, 2008
This offer is only while supplies last. I have read of others doing it this week so there must still be a supply. But, hurry if you are all about FREE!!
For those interested in Tyler's type of bracelet, I purchased his at petitebaublesboutique.com. (We purchased this one.) What I like about these bracelets is that you they offer custom engraving on the front and back. This allowed me to put what I wanted on each side. (Read more about that here.) With shipping, his bracelet cost me a little under $40.
Wednesday, August 6, 2008
Since our incident with our allergist on June 30 where she assured me Tyler had outgrown his peanut allergy only to find out he had not, I've had issues with her. What concerns me is that she only determined his lack of an allergy based on his RAST score. There was no skin test done. Instead she gave him a bite of peanut butter and a trip to the ER.
What bothers me the most (besides an apparent lack of competence) is that she wanted me to do the peanut food challenge at home. I did the milk and egg challenge at home (which turned out fine but I still question the wisdom in that). But peanut?? I can't let me my mind wander to what would have happened if I had. Sure I would have given him the EpiPen and called 911. But I am not equipped (mentally or emotionally) to handle a reaction like he had. Umm...isn't that what doctors are for?
That dreadful day we were in her her office, she was almost condescending about my fear of doing the challenge at home. I heard her tell a nurse right before that "Mom was too scared to do the challenge at home." Yes, guilty as charged!!
When she gave him the peanut butter, I immediately could tell something was wrong with Tyler. I told her so and she told me he was fine. We had this conversation several time in two or three minutes. Then I noticed his lips swelling. I didn't say anything because I thought my mind was playing tricks on me. She told me he was fine!
About a minute after that is when the coughing and vomiting started and proof that my mothering instincts were right. After that incident I had some anger directed partly at her. I think the reasons are obvious.
The next week I went back in to meet with her, I was still very upset. In fact, I refused to take Tyler back in. She spent 30 minutes with me and I felt a little more comfortable, but what happened on June 30 can never be undone.
For this reason, my husband and I started talking about changing allergists. Again, I hate change!! But sometimes it is necessary. Before the incident, a girl at church told me how wonderful her allergist was. Then my pediatrician told me she knew of a wonderful allergist if I wanted to change. Turns out it was the same guy.
Once the incident happened, I wondered if this might be the guy to change to. A few weeks later, I met another mom that has a child with PA. Guess who her doctor is. Same guy. In fact, she told me he is the guy to go to for a peanut allergy in our area. Hmm....God is trying to tell me something here, I think.
So, I called his office yesterday to see if I could set up a consultation between him and myself. I feel a great deal of protection in regards to Tyler's PA and I don't want to make another mistake on trusting a bad doctor. His office said they would have to get back to me if he would meet with me without Tyler present. Huh?? I explained my reason and left it at that.
Two hours later the phone rang. It was the doctor!! He wanted to tell me personally he would meet with me and do whatever it took to make me feel comfortable. I gave him our history and went into detail about June 30. He told me he would not have done a peanut challenge based only on a RAST score.
That was all I needed to hear. He acknowledged our former doctor (who he knows) made a bad judgment call. Although I have requested some other allergy testing, he wants Tyler to meet him and feel comfortable first. Seriously, could I ask for a better doctor? This guy has already completely won me over.
So, August 13 will be our "meet and greet." Tyler will go and the doctor will try to help him (and me) feel at ease in the office of an allergist. One where my baby doesn't have to leave on a stretcher.
Yes, sometimes change is good!!
Tuesday, August 5, 2008
If you are anything like me, I have found several snacks and other foods that Tyler can eat and I don't deviate a whole lot from them. They spell s-a-f-e-t-y to me. But, I have learned to read the label every time I buy something. Even if I've bought it a zillion times before. Why? Because things change.
What they process at a certain facility can change or even where they process can be different. Even the exact same food bought in the exact same location can vary. One may have a "may contain," label while the other one is completely safe.
Food companies are like people: UNPREDICTABLE.
I was reminded of this twice a couple of weeks ago. Since we are a one income family, we eat a lot of generics. (Yes, they really are as good as the name brand in most cases!) Since Tyler's diagnosis in early 2006, the generic Raisin Bran cereal I buy has been safe. Until last month.
I am in the habit of reading everything, every time (drives my family a little crazy!). When I picked it up, there was the giant "Processed in a facility..." Had I let my guard down since we have eaten that cereal for over two years, I would not have known. So now Post is happy that they have a new customer with our family!
The same week, Tyler was eating pretzels at church. They were also generic. I had approved these for our nursery in the past but my Mommy instincts had me pick up that bag and read. There it was: "Made in a facility that also makes peanut butter..." Ugh!! He had eaten these but thankfully had no reaction. This has led to new procedures in our church nursery where I must approve food EVERY SINGLE TIME something new enters. A little annoying but I can't take any chances on this happening again!!
As a rule, I read the label at the store and then read it again before I give it Tyler. This is a way to double check myself. It's become so second nature, I don't even think about it now.
Reading that label EVERY TIME (even twice) is crucial.
Monday, August 4, 2008
After Tyler's ER visit on June 30 everyone in his life became even more aware of just how life-threatening it is. I wondered if I could effectively communicate all that encompasses an anaphylactic reaction without overwhelming and even scaring those in his life.
After doing a little research online (including this website), I developed a plan that was thorough but not too overwhelming. I have posted it in both of our church nurseries, put one in his emergency medicine bag, and will be framing one for our home. The one at home will be kept in his closet and can easily be pulled out when we have a baby sitter.
Here is "Tyler's Emergency Plan for a Peanut Reaction"
(click on the plan to enlarge it)
It includes symptoms of both mild and severe reactions and what to do in each instance. I've also included some graphics about giving the EpiPen even though it is also on his trainer and the EpiPen itself.
Not only is this plan great to have in writing for other caregivers, it will be helpful to myself also. I'm not sure how rational I would be in the face of an allergic crisis. The plan makes it simple to just read and follow.
**If you would like to download this file, please click here.
Sunday, August 3, 2008
I was happy (not sure if that is really the appropriate word here) to see a story of a 20 month old PA kid whose life was saved not by his Mom (she was there but was in sheer panic by a lack of heart beat on her child in anaphylatic shock) , but instead his 3 year old brother who administered the life-saving EpiPen shot.
Read the entire story here.
This story should remind us as parents how important it is that those who are regularly around our PA kid know how to use that shot! It also made me think how my youngest child, Dylan (now 21 months), should be trained in 2 or 3 years on administering it, as well. You never know what circumstances life will bring. If I am emotionally unable to give the shot (I pray that never happens), I want others in my home to be equipped to save Tyler's life.
We often hear stories of gloom and doom when it comes to peanut allergies. Those are certainly warranted. But every now and then you run across something with this frightening allergy that allows a little light to shine in an otherwise dark place.
What a hero 3 year old Alex McLeod is!!
Saturday, August 2, 2008
(If you missed my series where I used our trip to show how traveling safe with a peanut allergy is possible, click here.)
When we arrived, I was excited to see how cool it was going to be to have a place that totally "got it" about Tyler's peanut allergy. My hopes were a little short lived but not totally dashed. When we sat down, the waiter asked if we had been to Red Robin before. I explained we had not but we were trying it because we understood they had a special "Peanut Allergy Menu."
"Peanut Allergy Menu?" was the teenager's response. He looked confused and I'm sure I looked disappointed. I told him maybe all of the Red Robin's didn't have what I read about. A few minutes later, however, he was back with the special menu.
This poor kid was either new or it's not a request they often get. Nevertheless, I was happy to get it. The whole packet was 5 pages long. The first page explained they did everything they could to ensure the accuracy of the menu but could not guarantee that their distributors did not change something without notice. They do, however, update the menu monthly so I felt satisfied with it. (They are covering themselves legally here and I understand that.)
The second and third pages showed the states and specific cities that the menu applied to. Yes, I checked and the one were were at was on there! Of course, they probably wouldn't have brought me the menu if they weren't!
The fourth and fifth pages had the actual menu. Part of that was the "Kid's Menu" we ordered from. There were interesting things that were not on there like French fries, chicken nuggets, pizza, and apple slices. My husband thought it was a mistake but I knew it meant they were being very thorough and totally understood cross contamination risks.
Tyler chose a hamburger with cantaloupe wedges. Here is a picture of him enjoying his meal:
(Note: you can see his medic alert bracelet while he eats!!)
OK, here is the paragraph where I admit I made a boo-boo at this place. I did not see in fine print under the burger that it says to order it without the "Red Robin Seasoning." Ugh!! We had absolutely no reaction but I didn't see the fine print until I got into the car after eating. (My 21 month old was wild and I was trying to keep him happy while I read the menu. Not an excuse, I know :( ) My guess would be this stuff must be processed in a facility with peanuts. Thankfully my mistake caused no harm but I was so upset for the first hour or so!! Hopefully the waiter or someone caught my dumb mistake.
When we nearly completed our meal, a manager came out to ask if this was our first time in. We told her it was and why we were visiting. I kept thanking her for providing a menu like this. She explained how they do thoroughly understand the seriousness of food allergies and how they are very careful to keep things separated in the kitchen. I told her what a relief to find a place that understood! My husband noticed she did not speak to anyone else so we are guessing she made a special trip out to see us since we were "special."
The food was actually relatively good. My other son and I both got chicken quesadillas and my husband got a pulled pork sandwich with French fries.
I will note one thing about this place: they do have peanuts in the kitchen. They state that on their disclaimer. Sometimes that makes me very uncomfortable, particularly when I can't see the prep area. But I think they absolutely "get it" when it comes to food allergies. They also have other allergy menus (gluten free, etc).
In the end, I felt comfortable eating at Red Robin (despite my own mistake!). We have one closer to our house that we plan to visit occasionally. I would recommend it to anyone dealing with a peanut allergy.
I do not know about the legality of me publishing their peanut allergy menu on my blog, so I will not. If you are interested, please send me an e-mail (see side bar for address) and I will scan a copy for you.