Category Archives: always be prepared

Food Allergy Reaction

This topic is always my biggest concern.  Obviously, I am always thinking about how to help Little R live a normal life while avoiding a potential food allergy reaction, especially a life threatening one.  He has had a few sporadic reactions over the years since his first one that almost took his life.  None of them required an Epi-Pen, but my biggest concern with this is that it can cause us to become complacent.

A lot of people are under the impression that all food allergy reactions will be like the first one.  They think that all symptoms will be the same, or that because the first reaction was not life threatening, that a life threatening one is unlikely. 

I cannot say it any clearer that THIS IS NOT TRUE!  I don’t know how many people I have talked to that have food allergy children, or care for one, and they inevitably make the comment that “They just get red around the mouth.  They have never had a life threatening reaction.”  Or, “Their reactions are NEVER anaphylactic.”  I believe that this is what makes death due to a food allergy reaction HIGH RISK!  I have read, and heard it said at FAAST food allergy meetings, that the number one cause of death from a food allergy reaction is FAILURE TO USE THE EPI-PEN IN TIME!  If you care for a food allergy child, you must first believe that any reaction could be potentially turn life threatening and be prepared to use the Epi-Pen! 

Ask any family who has lost a child due to a food allergy reaction.  I would bet that none of these families were the ones who were what most people would call “overprotective” when it came to their child’s food allergy.  I do not mean any disrespect to these parents.  I know how easy it is to live in denial or ignorance about food allergies.  Doctors just do not do a good enough job educating about them.  But, I just know too many other parents and care givers who live in this fog, and I wish for them to wake up, so to speak.

Read the story of  BJ Horn, or Emily Vonder Meulen.  Both of these children were loved by their parents, but ended up dying from food allergy reactions (namely peanut allergy) because the volatility of their allergy was not understood completely.  Click on their names to read their stories, and pay attention to the part where their parents basically say, “We didn’t know/believe that their allergy would be truly life threatening.”

Nobody wants to believe that they could lose their child, especially because of  food.  But, if your child has a food allergy, you MUST start taking this seriously!  If your child has a peanut allergy, you especially need to be on alert as peanut allergies appear to be the MOST volatile.

*BJ Horn link is from Allergy Moms blog.  Gina does a great job educating about food allergies.  I recommend reading her website and blog.

*Emily Vonder Meulen link is from Food Allergy Angel website.  Paul has developed this website to help share Emily’s story in an effort to educate others about food allergies.

Leave a comment

Filed under advocating, always be prepared, Anaphylaxis, food allergy reactions, food allergy support

Food Residue Really IS Everywhere!

In regards to my sons food allergies, I worry all the time about the food residue that might be lurking around unseen.  When we attend a party or other gathering that includes food, my anxiety level is hightened because the offending food is within eyesight.  After reading Heather Legg’s article, Allergens Are Everywhere, Arn’t They? I discovered why I am still feeling unsettled in other settings. 

There are countless times when food residue may be present but invisible!  Heather mentions places like the grocery cart at the store and door handles at school where the “peanut free zones” do not apply.  This reminded me of an experience we encountered just yesterday.  I took my son to a local high school play.  During intermission many people visited the snack bar and brought some of their snacks into the theatre for the remaining performance.  Just after we sat down, my son grabbed my arm and said, “Mom!  That girl (sitting next to him) is eating candy and it IS NOT SKITTLES!”  I explained to the girl why he was worried, and I had him move to the other side of my seat.  I, of course, started wondering if his new seat might not have the presence of something he is allergic to.  While people with mild food allergies may not be as frightened by these scenerios, my son has a severe peanut allergy and will have a potentially life-threatening reaction witin seconds if the offending food residue were to enter his system! 

It was kind of refreshing for me to read Heather’s story because I have been struggling with this thought for a while now.  There are many people out there who do not truly understand the subject of food allergies.  Some of these people have claimed to be doctors and have even written articles claiming that food allergies are a hoax!  This causes people like me, the parent of a food allergic child, a lot of stress for a host of reasons.  The reality is that food allergies DO exsist, and every food allergic child is different.  Some children will experience only mild symptoms during a reaction, and others more extreme and life threatening.  I witnessed my son almost lose his life during his first reaction.  This was only after a pea-sized taste of peanut butter!  I guess I will never be able to get that image out of my mind. 

I have finally come to terms with the fact that I am a parent of a child who is severly allergic to peanuts.  I have made the choice to follow my gut instinct when it comes to protecting him and to stop worrying about what the rest of the world thinks.  After all, isn’t that our number one goal as parents… keeping our children safe?

Leave a comment

Filed under always be prepared, food allergies and school, travel w/food allergies

Venting My Frustration

If you have ever read my “about” page, you will know that I mentioned that I would sometimes use this blog to vent.  There are many struggles a food allergy parent faces, and one of them happens to involve other newly diagnosed food allergy children and their families.  Well, actually, I should clarify that I mean the allergist or other doctors that they have seen are the problem.

This frustration comes a little deeper because I remember too well being in these “new” parents’ shoes.  I remember leaving the hospital, then the pediatrician’s office, then the allergist’s office and feeling completely overwhelmed. 

I remember, clearly, the visit to the ER that first day.  The ER doctor was very nice, but this is all he told me. 

“Food allergies can be life-threatening, and in the case of your son, he almost lost his life today after that peanut butter taste.  You need to carry these Epi-Pens because they are the only thing that could save his life if this happened again.  Next, you should see your doctor for more information.  There are also some websites, I think one is www.foodallergy.org to learn more.  Be careful, because peanuts show up in the most unexpected places.  There are candies out there that you would never think peanut could be involved in.  Good Luck!” 

No, I was not shown how to use the Epi’s, I was not told why I should have two with my son at all times.  No, I was not told that I should use them even in the event that I am not sure he is having a reaction, but maybe he is, that it is better to ere on the side of caution.  (I was guessing I should wait to see what happens, which now we know that waiting could cost him his life!)  I was not told what all the signs are of a reaction.  All I had to go by was what I witnessed that morning-  hives around his mouth first, followed by wheezing in his chest, and once in the ambulance, hives and eczema all over his body!  Of course, there is a list of possible signs of a food allergy reaction.

The next step was to the pediatrician.  I have to state here that I love everything about our pediatrician except the knowledge of food allergies.  It was a doctor in the practice who, at his 1 year check up, gave me the instructions to feed him the “fattening foods” to help him gain wait.  These were specifically eggs, and peanut butter (among other things.)  Later I learned that the doctor’s who specialize in food allergies specifically say DO NOT FEED ANY CHILD PEANUT BUTTER BEFORE AGE 3- ESPECIALLY IF THEY HAVE ANY OF THE RISK FACTORS –family history of allergies (any kind, it does not have to be food allergies in particular), or The child has eczema.  In our case, I, his mother, grew up with and still deal with A LOT of allergies!  Sadly, my son has really bad eczema that started at only one month of age!  This doctor should never have given me the okay to feed him peanut butter!  The other problem with the ped office, in regards to our food allergy visit, was that I was not given any more information than the ER gave me except for more websites to search.  I was pretty much left alone to figure this out.

So, off to the allergy doctor.  I had scheduled this appointment to have him officially tested to get a baseline for his food allergy and to see if there were any others.  We learned at this appointment that he is indeed allergic to peanuts, in addition there are tree-nuts and eggs.  I believe I was asked if I had Epi-Pens and if I knew how to use them- and that was it!  Off to home I went.

About a week later, I realized that I was still feeling in the dark.  I can’t really explain it.  I guess it was a mother’s instinct or the fact that I was reading on the Internet all about food allergies.  I ended up scheduling another food allergy appointment with a different allergist for more testing on the rest of the top 8(that I learned about via Internet, not from a doctor!)  I was happy to learn that we were still only left with the three that he was originally tested for.  The only other new thing I learned that day was that I now had to check all food labels.  That is right, I was not explained this in the first place, it was about a week or so later at this second allergy visit!  I was handed three laminated cards with about 30 to 50 words written on each.  I was told to read all food labels and make sure none of these words were listed in the ingredients.  HOLY COW!  Talk about overwhelming!  Have you ever tried to read a food label in the first place?  Talk about a bunch of mumble jumble. (Thanks to the new labeling law, the top 8 food allergens now have to be listed in plain English, thank you.) 

So, in a nutshell, this is where I was left.  I slowly started to adjust our life around this food allergy situation.  I read tons of articles on-line about food allergies.  Some of these websites proved helpful, and I have listed them on my sidebar for easy access.  I eventually contacted our local food allergy support group FAAST and was given a wealth of information.  Cindy Moseley, the leader, called me personally on the phone to let me know they received my information through the website.  She told me how important it was to carry two Epi-Pens at all times (one could malfunction, or it could take too long for emergency services to arrive.  The medicine could wear off in 15 -20 minutes.)  She told me about Medic Alert and suggested I look into it for a bracelet for my son.  She even told me of a great cookbook that I could get to bake with out eggs!  I seriously think I was on the phone with her for about an hour.  It was the most support I had felt through the process at this point.

Through the years of spending my time being proactive reading and attending the FAAST meetings, I have learned a lot of information. 

Back to what kills me! 

Just about every time I meet a new food allergy parent, they seem to be so “green” in this area.  I was just talking to a friend yesterday who learned only weeks ago that her 18 month old is anaphylactic to peanuts.  She was fed peanut butter and almost lost her life.  It took 2 doses of meds at the ER to stop her reaction!  Yes, when I asked about Epi- Pens, they have them, and they were shown how to use them.  BUT, I still don’t think they understand how serious the situation is!  I think the biggest thing that stuck out to me was that my friend told me she wishes she knew how serious her child’s food allergy to peanut butter really is.  I quickly explained to her that, “Hey, she had anaphylactic reaction!  It doesn’t get more serious than that!  You know she could lose her life if she ingests anymore peanut.  Peanut allergies are so unpredictable.  You don’t know if the next reaction will be just like the first one.”  I told her, too, that each exposure could result in stronger reactions.  She said her husband wanted to give the child a taste at home to see what would happen!  Of course, I reminded myself that it isn’t their fault.  I BLAME THE DOCTORS!  They should have been explained details of the food allergy during their visit with the doctor!  Don’t these doctors realize that the parents are only going to follow their lead?  So, now I have the job, as a worried mom (that is how I am most looked at, I am sure) to explain all of this to her.  I urged her NOT to do any kind of food challenge at home.  I told her that children can die within minutes of an exposure.  She then said they were thinking about wiping some peanut butter on her skin to see what would happen. UGH!

Has anyone else had an experience like this one?  This is sadly not the first parent I have met who was not educated thoroughly about peanut allergy.  I am so worried, and I don’t know what to do.  I realize that outside of sharing my knowledge, there isn’t much I can do.

7 Comments

Filed under advocating, always be prepared, Anaphylaxis, food allergy support

2008 FAAST Back to School Program

On September 5th, Mrs. M(Little R’s teacher) and I attended the annual back to school FAAST meeting.  As always, it was a wealth of information.  I learn something new everytime I attend a FAAST meeting. 

This meeting, of course, was centered on getting ready for school.  I thought Debbie Donovan R.N. did a great job of conveying the information in a way that is very understandable.  She was very clear on how important it is to take charge and teach the school that every food allergy child has their own specific needs, even though the school might already have a food allergy plan intact.  In many cases it is solely up to the parent to make sure the correct people are trained to recognize a food allergy reaction and how to use the Epi-Pen.  Debbie developed a form to help specify each individual plan (I will add a link as soon as I write my own so you can see an example.)  This form stresses prevention as well as treatment in case of a reaction.  At the bottom is space for the doctor’s signature (which is important because it makes the form an official medical plan that the school cannot ignore.)  Debbie explained that she always makes her copies on bold color paper such as flourescent yellow or pink so that it stands out in a stack of other papers.  A copy should be in the nurse’s/health office, as well as with your child’s individual teacher/teachers. 

There were some things discussed at the meeting in which I did not originally think about when planning for Little R’s first day.  One of these situations was what would happen in case of a substitute teacher.  Mrs. M seemed to pick up on this one quicker than me (I just love that she is so on top of things), and she decided that it would be best that in the case of her absence he would spend the day with the the other kindergarten teacher as opposed to a substitute (who wouldn’t know who Little R is, or maybe not know about food allergies.)  This gives the other K teacher time to learn who Little R is, and to learn his plan.  It helps greatly that she has had previous experience with her own food allergy student in the past.

Another situation was about having pets in the classroom.  Many classroom type pets eat food that has nut products in it.  Debbie recommended that there not be a pet in a food allegy child’s classroom.

I apologize that I cannot convey the entire meeting in this one blog entry.  I simply decided to highlight what stuck out as most important to me.  If you live in the Cincinnatie area, I urge you to look into FAAST.  There are only a few meetings offered each year , but I have found them wonderfully informative.  The annual membership fee is only $20, and I know that if their is some kind of hardship, this can be waived.   If you do not live in the Cincinnati area, I know there are various other food allergy support groups around the country.  If you need help finding one, I would be happy to help!

1 Comment

Filed under always be prepared, food allergies and school, food allergy support

Update: Changes Concerning Cross-contamination and Feeding Our Children

After attending a FAAST meeting last night, I learned of a few changes we need to make in regards to keeping the boys safe from cross-contamination of their food allergens.

There were two speakers, Gale Prince and Mark Redmond. Both speakers came forth with very important information, but I will focus on what Gale had to say. He worked for the Kroger company for years. He is very involved in the labeling process of packaged food. Gale was very involved in the Food Allergen Labeling and Consumer Protection Act of 2004 (Title II of Public Law 108-282) to change the law on how food allergens are listed on our food labels. He is now involved in tweaking the many loopholes that still exist in the act. What I also found particularly helpful is that Gale is very familiar with production and manufacturing processes of our packaged and prepared food. He brought to light some the the difficulties that manufacturers have in regards to preventing cross-contamination.

In regards to some of the food allergens that we in particular have to watch out for- peanut, tree-nuts, and eggs, I learned of some things that we have to change immediately.

First of all, we need to avoid getting things from the deli. The risk of cross-contamination of eggs, nuts, and dairy(for those who need to avoid dairy) is very high. This was news to me; we have been getting deli meat and cheese all along! What I did not realize is that the deli is responsible for preparing other things such as the sides that you can get at the deli counter (egg salad, Waldorf chicken salad, potato salad, etc.) I think the danger speaks for itself. It is much safer to purchase pre-packaged deli products, as they are packaged in a separate facility where there are no other foods. The guidelines for labeling the pre-packaged deli products are much more strict than when purchasing things straight from the deli.

Another kind of food that we need to avoid are the things that are produced on shared equipment. The food allergen act does not require companies to list “possible cross-contamination.” They are only required to list any of the allergens if they are an actual ingredient of what ever that particular product happens to be.

For instance, ice cream is particularly susceptible. The speaker suggested that if we were to use pre-packaged ice cream, that we should stick with vanilla. It is almost always the first flavor produced of the day, therefore other flavors that contain the food allergens are produced later. The manufacturing lines are cleaned between flavors, but not as astringent as at the end of the day in which they are cleaned with more of a sanitation routine. In my opinion, the risk of a stray peanut being missed by the cleaning process is still too much of a risk for my children. So, for now we will only let them eat ice cream made at home.

One last piece of knowledge that I left with was that I should be looking for the additive called lysozyme. It is a derivative of egg, therefore it may be an issue for us since we have an egg allergy to watch out for. Apparently it is not considered one of the allergens that companies have to label since it is only a derivative.

Thanks to these two men who are actively working to make eating safer for our children. Also, thanks to all of you (our family and friends) for taking the time to read or updates in the same effort to help us keep our children safe. You are all a true blessing!

Leave a comment

Filed under always be prepared

When To Use The Epi-Pen

Like I have said many times before, when in doubt if the Epi-Pen should be used for an allergic reaction, err on the side of caution!

There has been a lot of this kind of discussion on the food allergy forum ‘Kids With Food Allergies’. The title of the discussion topic is Why Do We Hesitate?” The world of food allergies is very complex, and deciphering when an anaphylactic episode is beginning can be so as well. The key to saving a life from an anaphylactic reaction is using the Epi-Pen immediately. There is no room for hesitation!

I was reminded of this fact when I was reading another story on KWFA. Just recently, for their sons seventeenth birthday, a boys parents planned a special dinner for him at the Outback restaurant. They took the time to plan ahead. They contacted the Outback’s manager to explain the severity of their son’s food allergies, and to confirm how the restaurant handles these particular situations. The Outback has posted on their site their plan of prevention for patrons with food allergies and special diet needs. Based on all of this information, the family proceeded with their planned dinner.

Too make a long story short, their son did end up having an allergic/anaphylactic reaction and had to go to the ER. Luckily, he was saved. What struck me was that his symptoms didn’t start to occur until after they made it home and some time after opening birthday presents. The symptoms started with what sounds like hives, but by the time they made it to the ER their son’s body was covered with a bright red sunburn-like appearance! They did use the Epi-Pen, but not until the reaction progressed to this point. It sounds as though the epinephrine took longer to work, and many say that with each minute of hesitation, the epinephrine loses its power.

I have read other stories with the same similarity. I remember reading about Sabrina Shannon. She did end up getting a dose of the Epi-Pen after a reaction to dairy while she was at school, but it wasn’t until after her symptoms had progressed greatly. She ended up losing her life to the reaction.

Many other people have lost their lives to an anaphylactic reaction because of mistaking it for an asthma reaction, which reminds me of Emily Vonder Meulen. Of course, in this instance, a person would probably use the asthma inhaler and wait for the symptoms to go away. That, of course, only leads to a delay of the epinephrine they need and in turn horrible consequences.

Determining whether or not an anaphylactic episode is occurring is sometimes obvious, but can also be misleading. When asked about the symptoms of an anaphylactic reaction, most people will describe tightening of the throat, swelling, and itching. What most people don’t realize, though, is that cardio collapse can occur without respiratory symptoms, as stated here in the sixth paragraph.

Just remember, it might not always be obvious when the Epi-Pen should be administered, that is why I always say to err on the side of caution!

14 Comments

Filed under always be prepared, Anaphylaxis

Things to Keep in Mind

I came across this awesome list on the allergymoms website. I think it will prove to be very helpful for you when coming for a visit at our house, or when we come to yours!

Leave a comment

Filed under always be prepared