A New Food Allergy Documentary

One of the most frustrating things about having a child with a life-threatening food allergy is the lack of education for the average person. To add to the problem, there is not a lot of great material to educate others. That's why I was so excited when I discovered a director in our area that recently produced a documentary on life-threatening food allergies.

Kevin Lindenmuth debuted his documentary "I'm Not Nuts: Living with Food Allergies" to the support group I belong to a couple of weeks ago. Although I wasn't able to stay for the entire viewing (my kids were not cooperating!), it looked incredible. The part I saw included interviews with parents of FA kids, allergists, and FAAN personnel. I found myself nodding as I related to much of what was said.

Here is a clip of the first few minutes of the documentary:



The documentary should debut in the Detroit area on PBS in February and nationwide in April or May.

If you would like to order a copy of the documentary, visit this link.

You Ate Where?

I am always looking for the funny moments that having a child with a peanut allergy brings. If you look, they really are there! If you can't have a sense of humor about even the most difficult of circumstances, life will not be much fun.

So, I wanted to share a story from the mouth of my PA kid last weekend that still makes me chuckle.

Friday morning Tyler had a recheck on his ruptured ear drum. Since Friday is my husband's day off, he had my other child, Dylan. I promised Tyler a trip to McDonald's after his doctor appointment because he was also getting a flu shot. Seeing an opportunity, my husband decided to take Dylan to a new hamburger joint. Since I only have a handful of places I trust, Tyler doesn't just try some no name place. This was hubby's chance since we were gone!

As soon as he entered, he noticed on the menu there was an "Elvis Sandwich" (PB, bananas, and honey) and a grilled PB&J. Since no one is our house eats peanuts for Tyler's safety, my husband and Dylan had burger and a ham sandwich. They loved it! (It is liberating on the rare chance to try something we don't normally eat because of Tyler.)

When we came home, my husband told me about the two peanut butter sandwiches on the menu and how it certainly would never be safe for Tyler. My little PA kid has his listening ears on. A few moments later, my husband went to get the mail and I went down the hall.

Tyler was happily finishing up his chicken nuggets when Dylan asked for one. Tyler said, in the most disgusted tone I have ever heard him use, "No, Dylan. You already ate in the peanut butter place!"

While the statement was funny, the delivery was hysterical!

That night for dinner my husband and I went out and my mother in law watched the boys. After we left, Tyler told my mother in law that his dad and Dylan had eaten at a peanut butter place for lunch. He was tattling on his daddy!

My mother in law was curious to know what had taken place at lunch since she knows I have pretty strict standards about no one in the house eating peanuts. Once we explained the situation, we all had a laugh.

(Please note that Tyler was never traumatized by this event since I have been working with him to understand that not everyone has his allergy. He was, in fact, rather disgusted that any family member would want to be in the presence of peanuts. In a funny way, this situation shows me that many of the talks that we have about his PA are really sinking in.)

Thanksgiving Tips

Robyn, Any Thanksgiving words of wisdom for a PA newbie? Thanks!

In our family, I am very lucky that Tyler has always had me or my mother in law cook him Thanksgiving. My MIL has two other grandchildren that are 11 with tree nut allergy so she knows all about cooking and cross contamination issues. She knows what I trust. She usually lets me read ingredients, too, just so I feel even better.But I realize many when many others have a child diagnosed with PA, it is entirely new to the whole family. Here a few suggestions I would offer.

Stay simple. I don't know why Thanksgiving is so notorious for casseroles but it is. It's amazing how many ingredients can be in one casserole!! So, unless you can read every label and feel totally comfortable, I would avoid casseroles unless you cooked them yourself. It's my MIL's turn this year. She gave me the menu Friday night. We will only do one safe casserole. The rest will be Stove top stuffing, veggies, rolls, and turkey. We will only have a few safe desserts. Probably a pie and cookies. Nothing elaborate.

Bring your own food. This can be a little embarrassing, I admit. Particularly if your family thinks your child only needs to stay away from the actual peanut and has no clue about cross contamination. I'm a terrible people pleaser but had to get over it when Tyler was diagnosed with 3 food allergies. (Thankfully he outgrew milk and eggs earlier this year so we have a lot more "safe" foods this year.) I used to be notorious for bringing little bowls of safe food (and still do sometimes) in an insulated carrier. Most people (even if they didn't understand) were very nice about it.

If you're not cooking, talk to who is now. If you explain cross contamination to the cook (can't have anything processed in the same facility where there are peanuts,etc), they will hopefully be understanding. The earlier you address the issue, the better. You don't want to wait until the night before when the cook is stressed out.

Offer to bring things. If Thanksgiving is elaborate in your family, just offer to bring safe elaborate things. Plus, the cook will probably love the help.

Keep your child close at your side. I have a friend with a PA kid that has to watch her son like a hawk at family gatherings on her side of the family (her in-laws are much better). She said she has caught uncles and grandparents who know about her son's PA sneaking him cookies and other desserts with a "Don't tell mom" warning. The desserts are free of peanuts but not cross contamination issues! She has to watch him (he just turned 3) closely just in case someone does this.

If any of you other peanut allergy newbies have questions or concerns, please don't hesitate to ask. I still get a little nervous and this is our third holiday season with PA. Chances are, if you have the question, others do too!

If you have survived other holidays awith PA nd have tips I have missed, please share them in the comments.

Cake Mixes

I received the following question from a reader:

Robyn, can you share which mixes you have found to be unsafe (other than the ones labeled with nuts of course). Thanks!

First of all, I will say many parents of PA kids bake their cakes from scratch. Deciding to use a mix is certainly a comfort level issue. Since Tyler was allergic to milk and eggs for his first 3 years, it has been a treat for all of us to be able to use cake mixes once in a while with him.

Instead of telling you all of the ones I don't use, I will tell you what I do use: Betty Crocker and Pillsbury mixes. The research I have done on the peanutallergy.com boards and conversations I have had with other parents with kids nut allergies has helped me make this decision. Again, do you own research and do what feels best to you.

You will notice, however, I did not mention Duncan Hines. I read a couple of different places that the company advises people with nut allergies not to consume their products. Then, a friend of mine said she actually contacted the company and they said their products are labeled if they are not safe. So, she allows her PA kid to eat Duncan Hines.

My line of thinking is that since I have a question about it and your answer can depend on who you happen to talk to on the phone, I just avoid it. Since I have 2 I trust, there is no need for me to add another one I feel a little less comfortable.

Again, do you own research and determine what is in your comfort level.

Do some of you use other commercial brands? I would love to hear about them, particularly if you have contacted the company about their safety. Or, ones you will not use?

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I want to apologize for the lack of post lately! Last week I did not feel well. Then, this week we had serious computer problems. We have a new computer now and I think we are back up and running.

For the person that left a comment a week or so ago about Epi trainers and where to obtain them, please send me an e-mail (address on sidebar) and I will make sure you get one.

You Know You Have a Child with a Peanut Allergy When...

Yes, we need a few laughs around here! Around our house, it seems like the cold temps have led to all sorts of ailments. So, when I stumbled on this list and it made me laugh out loud, I knew I needed to share!

You know you have a child with a peanut allergy when:

• Eating out as a family is more work for you than cooking at home.

• You consider buying stock in Platex Products, maker of Wet Wipes.

• You have snacks or even full meals with you every time you leave the house with your PA kid.

• Peanuts begin to resemble hand grenades.

• The pursuit of "safe and healthy foods" is a full time occupation...and preoccupation.

• You've boycotted certain manufacturer's foods due to their irresponsible labeling practices.

• You can still feel like you have had a successful day when all you have done is keep your PA kid alive.

• You hold your breath when you pass the bin of bulk peanuts in the produce department, while carefully avoiding any stray shells. Then you wipe your shoes with wet wipes before entering your vehicle.

• Your 3 year old can pronounce "anaphylaxis" and "ephinephrine."

• You feel guilty about some of the things you ate while you were pregnant.

• You catch your child looking at a smudged library book at the library and take it away immediately. "That smudge is either peanut butter or baby poop," you think to yourself, while washing your child's hands and praying it is baby poop.
  

Gotta Love Jiffy

If you are frugal like I am, you love a good bargain. Unfortunately, when you deal with a nut allergy of any sort, "cheap" does not usually mean "safe." That's why I was so excited not long ago when my sister-in-law told me about a brand that is totally nut free. What's even better, its super cheap!

What brand am I talking about? Jiffy! These mixes are small but always under a dollar. Plus, they are usually pretty good.

Jiffy is made just outside of where our family lives in Detroit. My niece's class took a field trip of this facility (there is only one). My sister-in-law toured the facility with my niece's class. She has two other children with tree nut allergies. So, she was very interested in actually seeing with her own eyes the safety (or lack thereof) of this place.

She questioned the person giving the tour and discovered that the mixes are made entirely in the facility. Plus, there is not a single nut in there!

I do trust other brands of mixes (specifically Betty Crocker and Pillsbury) but there are types of those mixes that are not safe. What is great about Jiffy is that I can let Tyler pick any of the mixes he wants with no restrictions. For him, this is a lot of fun.

Jiffy is not what I would call "healthy" but they are nice to occasionally have on hand. (Their corn muffins are our favorite!). In fact, this morning I promised Tyler we would make the chocolate muffins for breakfast. He helps make them with me since they are so simple. Plus, we have a great time together.

So, if you'll excuse me, I have a date with a certain 3 year old and a muffin tin...

Going International

One thing that is no longer on our "To Do" list with Tyler's peanut is to travel overseas. Prior to diagnosis, we had even considered moving overseas to do mission and humanitarian work. We no longer feel comfortable with that career path. So, we are keeping our feet planted on US soil.

If, however, you have plans to travel overseas or you have food that is not written in English, I found a wonderful resource for you! It includes 40 different languages and over 140 different foods. It claims to be the most comprehensive food allergy translation service in the world. Best of all, its free!

If foreign foods are in your diet, visit Menudata and explore its different features.

Where Do You Store Your Epi Trainer?

Since my husband is a pastor, Tyler has several different people care for him in the course of a month. As a result, I have trained a lot of people with his Epi pen. I always make sure at least two people watching him are trained. That way if someone "freaks out" (women usually watch him and we ladies are prone to do that in a crisis!), someone else can take over quickly.

For years I have kept his trainer in the same bag as his regular Epi pens. I always show them both and explain the difference. Recently, however, I started worrying (like PA moms do) that, in a crisis, someone might grab the trainer and use it in the case of emergency. Thinking is not always the most rational when you think a child is about to die. I can see how someone might grab the trainer since that is what they are most familiar with.

So, I got concerned decided to leave the trainer at home. I have trained so many people that I didn't think I would need to do it again anytime soon. Naturally, that was a poor assumption. Sunday morning, someone asked me to show them the Epi and how to use it. This person does not usually watch Tyler but she was just curious. I never turn down an opportunity to show someone how to save my child's life!

I opened his bag of Epi's and remembered and the trainer wasn't there. It wasn't a big deal, I just pulled the real deal out of the bag, showed her, and was very careful not to pull the gray cap off!

I never know when an impromptu training session might take place. Now I have decided to keep the trainer in my purse. That way it is with me at all times. Since I am the one doing the training, it seems a logical place to be. Plus, it is not with the real Epi pens so no mistake will be made in the face of a crisis.

Where do you store your trainers?

The "Nutty" News About Puffs

Since this is a peanut allergy blog, obviously I normally blog about peanuts. But I know many of you avoid tree nuts as well. So, I couldn't resist mentioning something alarming I read recently that effects those living with a tree nut allergy. The culprit will surprise you.

Puff Plus with lotion. Huh? That's right a tissue!! The culprit is the shea butter that is in the lotion they use. Believe it or not, the shea they derive the "butter from is actually a tree nut! Who would have thought that?

It amazes me every time I learn a new place that nuts can hide! Luckily, it appears that the Kleenex brand has aloe and vitamin and no tree nuts. I like Puffs better but since we will not know if Tyler is allergic to tree nuts until January, we are switching to Kleenex.

Good grief! Who would have thought nuts could hide in a tissue?

Ben and Jerry's - More Reasons to Love Them

Yesterday Ben and Jerry's Ice Cream was giving away a free scoop of ice cream for everyone who voted. My husband and I love this ice cream and couldn't resist taking advantage of this awesome deal. In the past, I have said that we feel comfortable with Tyler eating this brand of ice cream. That safe level of comfort does not extend to Ben and Jerry's in an actual ice cream parlor, though.

I have been amazed at how well Tyler is handling the fact that he can not eat everything the rest of us do. Until the last couple of months, I was pretty sneaky so he wouldn't know. But I feel he understands his allergy enough that he can handle it. So, to prevent any melt downs I explained the situation. As luck would have it, we had a small individual serving of Ben and Jerry's in our freezer. I offered to bring that or let him pick some other treat. Amazingly, he picked a safe granola bar.

When we got to the front of the line (there was a LONG line!), I froze. There was a big container of peanuts in front of the ice cream freezer. I reminded myself that instead of hyperventilating, I could this as a "teachable moment." I told Tyler not to touch the counter or anything at all in the vicinity of the peanuts. I pointed to them and showed him why I was saying this. He said "OK" and kept his hands to himself. I never once had to remind him!

Once we got our ice cream, Tyler was more interested in playing in the playground area (we were in a mall). He did not ask for his granola bar at all. Instead, he pretended like he was serving ice cream to others.

One more note about Ben and Jerry's: This is a company that "gets" food allergies. They had a sign that said if you have a food allergy to let them know and they will do everything they can to accommodate you. For me, that would mean opening a fresh container of ice cream and using a throughly scrubbed scooper and getting a serving container and spoon out of an unopened box. I'm still not sure if this is within my comfort level but it is nice to know we might have an option if we ever want to go out for ice cream as a family.

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A special request: Are any of you out there dealing with a soy allergy? I have a friend whose one year old was recently diagnosed with a soy allergy (thankfully he is not PA). She is having a terrible time finding safe food for him to eat. If you deal with soy, would you please leave a comment or email me (peanutallergykid AT gmail DOT com) and give me some suggestions on foods for her son and places to shop. Thanks!!)

Beware of the Deli Case

Are you like most American families where sandwiches are a staple in your house? Since I am all about simple and cheap, our refrigerator is always stocked with all the fixings for a great sandwich. Up until recently I always bought my lunch meat at the deli counter.

I shop at Super Wal-Mart most of the time, so that has always been my deli of choice. Then, I noticed a sign warning those with certain allergens that they cannot guarantee the safety of their deli products. Of course, the dreaded "P-E-A-N-U-T" was listed. Huh?

I wondered if they were just listing it for liability reasons. But then I noticed their bakery is actually a part of the deli (no walls separating the two). The chances of a peanut flying several feet across to the deli might be slim but it made me wonder.

Then I read how some deli meats actually contain nuts. Our family usually sticks to ham and turkey so I don't know what meat that might be. Still, if there is only one slicer so the risk for cross contamination would be huge.

On Sunday morning I talked with a fellow church member. She brought up Tyler's peanut allergy so you know I had plenty to say. I was amazed to hear her say, "Robyn, don't ever get him food from a deli." I laughed and told her I had been planning to write on that this week!

She used to work in food safety and said I would be amazed at all the possibilities for cross contamination in a deli. Not only are there nuts, there is no training on food allergies. She also brought up the fact that they don't change their gloves frequently. That made me think just how easily one of the bakery peanuts could indeed get into deli meat.

I don't want to scare my readers into never visiting a deli. Taking a look at the vicinity of the bakery to the deli is not a bad idea, though. If they are not near each other, ask the deli manager about nuts in the meats. If they do not carry these types of meats, a deli might be acceptable.

I would love to hear the thoughts of others on this issue.

Review of Choco Boom Bars

A couple of months ago our family got to try the new Enjoy Life Choco Boom bars. (How's that for a name?) Most importantly, they are free of all 8 allergens. Plus, they are made in a dedicated facility with no nuts!

Like many other allergen free foods, I questioned how good these things would be. They were awesome! I will admit I only took one bite because I wanted Tyler to be able to eat all of the bar. But, these were great! My tree nut allergic niece and nephew were with us and tried the one with rice in it (similar to a Nestle Crunch) and they absolutely loved it, too. (Note to self: Good Christmas gift for the niece and nephew!)

I bought a couple to have on hand in case we are ever in a situation where Tyler is unable to eat candy bars that others are eating. I'll warn you, though, they were not cheap. I believe they ran around $1.59 a piece at Whole Foods. But I thought a couple would be worth it.

Want a coupon to these great things? Visit this link and you can get a coupon and find out who carries them in your area. Really, they are totally worth it!

Thank Goodness Halloween is Over!

I was dreading Halloween this year. It used to be so much fun as a kid, but with Tyler's peanut allergy, I worried he would feel left out. On Thursday, an ER doctor with a blog sent me a link to his blog where he referenced my blog. (Cool!) In the article, the ER doctor talked about how busy the ER can be on Halloween due to peanut allergy. I was thankful we would not be in that number. Or would we?

Believe it or not, Tyler and I ushered in Halloween sitting in the ER. Thankfully, it had nothing to do with his peanut allergy. Instead, it was a bad ear infection. He had an ear drum rupture last summer so when he was crying that his ear hurt, I called his doctor. She sent me to the ER. We were trying to avoid another rupture. It had not ruptured by the time we saw the doctor at 1 a.m. Halloween morning. That afternoon, however, it did rupture. Poor guy!

The good news is we were reaction-free on Halloween! Yeah! I hope all of my readers can say the same. Now, onto Thanksgiving and Christmas where nuts are everywhere. And, no, I'm not talking about relatives!