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.

Advertisements

7 Comments

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

7 responses to “Venting My Frustration

  1. Many parents are somewhat in denial when they receive their initial nut allergy or food allergy diagnosis. Even if they witnessed their child in anaphylaxis, they may not want to believe it is really happening to their child.

    Food allergies are completely life-altering and so it takes many of us time to absorb what is going on with our child. I know it took time for me to accept everything and I think these other parents you speak of will “get it” once it’s had a chance to sink in.

    I agree with you–some doctors don’t seem to do a very good job with educating the parents. My doctor gave me all the facts and emphasized the seriousness of everything, but I still needed to educate myself to get the full effect.

    Maybe if you steer these “frustrating parents” toward FAAN web site and even your blog, you will help them gain a better understanding of the issue.

    Keep up the good work! 🙂 Regards, Jenny

  2. Amy

    Thank you Jenny. I think you are right. I think it does take time to let it all sink in. It is just my nature to want to help, and I feel like my words are going on deaf ears. I will make sure not to be overwhelming during any further discusions, maybe this will help. The thought of an in home food challenge just sent me over the edge a bit, I think 🙂

  3. Hello,
    When my son was diagnosed with allergies to soy,peanuts,eggs,wheat and dairy I felt lost. I couldn’t find much information or any recipes. So I started http://www.spewdfree.com My website has recipes that are free of soy,peanuts,egg,wheat and dairy.
    Thanks,
    Heather

  4. Tracy

    Wow – I’ve dealt with parents of a child with peanut allergies who didn’t “get it,” but never anyone who’d think of trying peanut butter on an 18-month old after a trip to the hospital.

    I’m afraid that nothing short of another hospital visit is likely to get through to them, but if you want, you could try sharing this “In memory” thread from a message board I visit.

    (I would NOT normally recommend those new to allergies visit it – and if you do, be sure to have tissues ready).

    Best wishes.

    http://allergy.hyperboards.com/index.php?action=view_topic&topic_id=112

  5. rachelima

    I so completely know what you mean! I was at our food allergy support group and a young mom was mad that her day care just wouldn’t “get it” and it was really the daycare’s job to get it. Her job was still more important. We were trying to teach her, the way you are trying to teach your friend, and she just was not yet able to face reality. We have all learned that the only people who truly get the seriousness and vigilance is us… but remember, even we took a while to get informed and believe, whether it was our pediatricians fault or lack of information. Make sure your friend knows the reality of how food allergic kids actually die: 1) allergic to peanut butter 2) asthmatic 3) no EPI given when needed. Then, she can learn in her own time how vigilant she needs to be as long as you’ve taken care of emergencies. I know some parents who have let their child have an EPI PEN multiple times; and their child and the parents are fine with that!! After 10 years of having problems from teachers, administrators, principals, grandparents and even other parents of kids with food allergies, everyone comes into enlightenment in their own time… You are a caring friend and have done the right thing!

  6. kellyrudnicki

    yes, i can totally relate. my son is severely allergic to dairy, peanuts and tree nuts, (oh and legumes too). as you all know he is also asthmatic so the chances of a life threatening reaction are increased. as parents we get this diagnosis, but the reality sets in much later as to its severity. for me, i was always terrified of using “the pen” mostly because i thought i could hurt my son if i used it (instead of benydryl) i was so misinformed in the beginning. he’s 6 now, and now we’re navigating through the elementary school waters… anyway, i am trilled to have found fellow food allergy bloggers ( i just started mine and would love input! i am writing a dairy, egg and nut free cookbook and am posting recipes for moms to try.) my site is http://www.foodallergymama.com or just click on my name.

  7. Deb

    Thank you so much for posting this. I am somebody who has a life-threating peanut allergy among other foods, and now my kids both have major food allergies. This is so true about your trips to ER and to your doctor. I have even found lack of information with our allergists which amazes me since that is the business that they are in. I am so thankful for blogs like yours and other information from other mom’s on the net that really spell it out in plain English. So thank you!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s