Category Archives: food allergy support

Book Review- Flourishing With Food Allergies

51pvMpSDSuL__BO2,204,203,200_PIsitb-sticker-arrow-click,TopRight,35,-76_AA240_SH20_OU01_I was offered the exciting privilege of reviewing a book about food allergies.  Flourishing With Food Allergies, by A. Anderson, proved to be a great resource for information on living with food allergies.  Living with food allergies, especially when it is your child, proves to carry a huge weight of worry and anxiety.  The first part of this book provides snippets from other people’s experiences.  It helped me to feel like I was not alone, or crazy for that matter. 

What I like most about this book is that it  is very thought provoking about the cause of food allergies.  I know that there has been great effort in searching for a cure, but I have always felt that finding the cause is more important.  If there is something that is causing such havoc on our biological system, it should be stopped!  What about autism and ADHD?  Could these be the results of the same culprit?  Do you realize how many extra chemicals go into our food supply? 

Many people take for granted that we live in a well protected society and that this protection includes our food supply.  Maybe you have noticed all the press on things such as BPA in our plastic, hormones and antibiotics in our milk, and pesticides contaminating our produce, just to name a few.  Ms. Anderson does a great job in her book shedding more light on some of these kinds of questions.

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Filed under food allergy support, product reviews, research for the cause

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.

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

Food Allergies in the Social World

I know, the title is a bit strange.  I just need to write about something that has been on my mind. 

I have written previously that my son with the life threatening food allergies started kindergarten this year.  I have been amazed at how wonderful his teacher has been about following our guidelines in regards to keeping him safe.  She has called me several times with questions when she wasn’t sure about something.  I think this is great.  It makes me feel like she is really on top of things.

It is not really anything to do with the school that bothers me.  It is that meeting new people with children at the school who are new to the world of food allergies. 

I didn’t realize until recently that I have been living in a “safe” world of friendship for quite awhile now.  A few years ago when we moved into our new house, I went through the exhausting task of teaching our new friends in the neighborhood about little R’s food allergies and explaining to them how his life can be truly threatened in a matter of minutes.  They have all come to truly understand the situation and are very supportive.

Just recently, through school, we have started making new friends.  They are wonderful people.  I really enjoy the company of these moms, and my son likes playing with their children.  I have found, though, that I have had a hard time making it clear that little R’s food allergies are pretty severe.  There are many other children at the school who have peanut allergies and they do fine there.  I think that it is too easy to get lumped in a group in which it seems easy to assume that we are all the same.  As a food allergy mom I know that each child’s situation is different, though.  What may work for these other children may not work for us.  It is hard to explain that to someone on the outside.

I have made the final decision to homeschool starting next year.  Though the food allergies play a part in my decision, there are many other reasons as well.  The point is that I have made the decision known, and I think some of these other moms may fell I am being overprotective.  I am sure that looking in from the outside, it may appear to look that way.  But, when it comes to my dear chlidren, I feel that my ultimate job as a parent… before anything else… is to keep them safe.

I know that parents in the food allergy world will understand where I am coming from.  I guess that is why I needed to write this post.  I sometimes feel very alone in this world of food allergies, and right now I could use some words of encouragement.

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Filed under food allergies and friends, food allergies and school, food allergy support, Our personal journey

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.

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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!

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

Food Allergy Support- in the form of music???

     Sometime within the past year, a Canadian man by the name of Kyle Dine produced an awesome food allergy CD, “You Must Be Nuts.”  Each of the songs are very upbeat with catchy rhymes, and they zero in on the different aspects of food allergies.  A few of my favorites are, “Epi-Man,” “Smelephant the Allergic Elephant,” and “Stop! Please Don’t Feed Me.”

     Living in the world of food allergies is at times very stressful and overwhelming- especially for a parent of a food allergic child.  Some of these songs come across as silly, but in reality they hit home hard for me.  I found myself tearing up quite a bit the first time I listened.  It is as though there is now something HUGE out there that understands my life in the world of food allergies, and provides something that my child can really connect to.  Thank you Kyle Dine!

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Filed under food allergy support

Kids With Food Allergies

I would like to take this time to write about a wonderful online support group that has proven to be of great help to me this past year. Kids With Food Allergies is an online site that offers a forum for parents of kids with food allergies where they can engage in conversation about all of the different aspects of living with a child that suffers this disease.

For me, it has not only given me great support in that I was reminded I am not alone in this battle, but I have gained some great advice through my experience there.

Of course, it is always important to check with your doctor first about medical issues, but in the challenging world of food allergies, it sometimes takes a whole community of experienced parents to help figure out some of the mysterious reactions that are often encountered on this journey.

For what it is worth, I give my full endorsement to Kids With Food Allergies. I hope, as a parent with a food allergy kid, you can find the same sense of peace I have found while visiting and sharing with the other parents who are also in your shoes.

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Filed under food allergy support