Food Allergy Stories

I hope this new page attracts some of my kids (patients) who I have followed over the years for food allergy issues. I have invited them to tell their food allergy stories. I think that sharing of experiences helps others who are just starting out in this world of food allergy.

This is the first entry.

Yes I too have a food allergy. It is to a fruit, watermelon.

My food allergen.

My food allergen.

When I eat watermelon, I lose my voice for about an hour. This condition was called oral anaphylaxis in the past and is now known as the oral allergy syndrome. It is certainly unique enough for me to avoid. However, it does find its way into fruit salads.

Tell me your story.

Fred Leickly

Using an Epi-pen for a reaction to food- the debriefing (January 25, 2010)Today in clinic we saw a young lady who needed to use her Epi-pen (injectable epinephrine) for a food reaction. This event occurred earlier in January. She was doing great at the time of today’s visit.When an Epi-pen is used, the patient needs to go immediately to the emergency department (ED). In many respects, the emergent treatment ( the use of the Epi-pen) buys time to get the child to a medical facility for evaluation.It is the usual and customary recommendation of our allergy practice to bring the family back for a debriefing after such an event. We can all learn from the experience and we can use the opportunity to troubleshoot in hopes of the episode never repeating itself. So we went over what happened, how they responded, what was done in the ED, and what needs to be done to make sure it does not happen again.I am very proud of this family, they did everything correctly. They were nervous/anxious about the episode, however they got through all that, did what needed to be done and everything worked out.As you know, Riley is a teaching hospital. I almost always have a resident with me. Today the resident took the interval history from this young lady and her family. After he presented, we went in the the examination room together to go over what happened with the child.  I am sure he learned from this experience and he will incorporate it in his pediatric practice in the future.We discovered a few things that needed to be corrected. We went over the exposure and made some recommendations and re-emphasized that certain styles of cooking in restaurants that may pose an exposure risk. We also went over the proper application of the Epi-pen.The debriefing session is very helpful for health care providers to learn about food allergy and I hope that it is helpful for the families to be reassured regarding how they handled the event and to talk about how to be more preventative.FEL 1-25-2010

Sam’s Story

(Picture from teachertho @ http://media.photobucket.com/image/peanuts/teachertho/Letgo3-U1/i-peanuts.jpg?o=2)

My name is Sam.  I am 8 years old.  I am allergic to peanuts, milk and peas.  I hate being allergic to peanuts the most because I could die if I touch them or eat them.  My Mom and Dad used to make me eat peas.  I would always throw up. One day they checked on the computer and found I was allergic to them.  I don’t mind be allergic to peas.

I hate having allergies because I can’t try that many new foods.  I usually don’t think about my allergies until I am at school and someone has a birthday and brings in something to share with the class that I can’t eat. I am usually ok because we make sure I have something else to eat.  There is another student allergic to milk and that helps because I am not the only one with allergies in my class.

Allergies are hard to live with but, I do ok.  I just have to be a little bit more careful.

Thanks Sam! Being careful is very important. Your family has taught you well. So there is a food you don’t mind having a sensitivity for. I felt that way about lima beans.

 

A Question from Andrew’s Mom

My son is a patient of yours and I enjoy reading your blog.

With a milk allergic 8 year old, I am always looking for
good calcium supplements. Tums would be an option..
However, I remember reading somewhere ( and I cannot find the article again, of course!) that it is not good for food allergic children to eat anti acids.
Might have been in context with probiotiocs/GI flora…
Your thoughts on this?
Thanks, (Andrew’s mom)

Greetings Eva,
Thanks for the question. I punted this to one of my ‘go to’ dietary people. Laura tells me that Tums for kids- 2 per day in the age range 2-4 and 3 Tums per day in those who are 5 and older. This is the less costly way to supplement calcium. She also tells me that there are milk-free calcium supplements. She gave the Vitamin Shoppe’s Nature’s Plus Animal Parade Calcium tab and Hero Nutritional’s Yummi Bears Calcium. She did warn that they are price.
It is a theory that a certain acid level is needed in the gastrointestinal tract to help digest large molecules of food and that the use of antacids in the very young may allow large protein molecules to be absorbed through a developing gi tract. I do not think this has been proven. You would have to see a surge in new food allergy symptoms/sensitization after the Tums were started. That has not been my experience.
In hopes that this helps,
Warmest regards and thanks for sharing your question. As a disclaimer, I have no financial relationship with the Vitamin Shoppe or these products other than purchasing products from them

FEL

Connor’s Story

When we tell our story of food allergies it always seems to feel as though a little relief has left us each time it is told. It simply amazes our family on a daily basis how uneducated most people are about food allergies.  I recently read that 1 in 91 children have autism, now we all know what autism is and how it affects our youth.  But food allergies affects 1 in 25 children an amazing difference in statistics but yet very little is known from the general public about food allergies

Connor is our middle son of three little ones now almost ages 9, 6, and 3.  Our story begins at 6 months of age for Connor.  He was just starting baby food.  I had nursed him (and nursed until age 2) and he had only had baby cereal and the basic fruits and veggies (baby food in the jar).  We were ready to try him on some mixed foods, so I bought macaroni and cheese (again baby food in a jar) –‘every kids favorite’ to try for lunch the next day with Connor.

Lunch time came around and I put Connor in his high chair and cracked open the macaroni and cheese. YUMMM! He loved it.  We made it through an entire jar and he still wanted more, so I opened a second jar, about 2 baby spoonfuls into the second jar I noticed that he had little bumps around his lips and he kept itching his eyes and mouth with his fist.  I kept watching him for what seemed like a lifetime but really was less than a minute.  Within a minute he went from tiny bumps to full blown hives and eyes swelled shut and his face was about twice his normal size.

Mind you I was clueless to food allergies and had no idea what was going on with him.  I immediately called my pediatrician who QUICKLY advised me he was having an allergic reaction and to give him Benadryl and get him to the ER or the office.  Well, having never needed Benadryl we did not having any in our home.  I remember so vividly holding the phone to my ear and listening to the pediatrician talking and feeling as though I had no control of the situation- as a mom I felt helpless.  Connor’s dad/my husband had our car at work that day.  So I had to call him to get him to the house so we could go to the pediatrician’s office.  The other option was to call 911. He said get him here (to the office) now!  It was about a 20 minute trip and I am not proud to say I sped with blinkers on and running red lights the whole way. We made it in about 10 min.  The entire time I was also watching Connor continuing to swell and have raspy breathing.  I pulled into the pediatrician’s parking lot and I don’t even remember parking and going through the door.  We got him in the room where they had a crash cart, with Benadryl and Epi Pens ready for use.  They gave him a dose of Benadryl, listened to his breathing and checked him thoroughly for all vitals etc….He was maintaining.  About 20 minutes went by and the swelling began to decrease as well as the hives.  I don’t remember how much time went by but we gave him the second dose of Benadryl.  Within about 1 – 1 1/2 hours we were able to leave the office and he was fine.  NO EPI’s were needed.

This started us on our journey of Food Allergies.  We were referred to an Allergist who we saw for about 2 years.  We never felt as though he was directing us in the right direction for Connor.  I continually felt I was more educated than him (the allergist).  We did all of the RAST for MANY foods, everything Connor tested positive to we were told to eliminate from his diet.  At that time he was barley eating anything.  Dairy, Egg, Peanut, Tree nuts, Rice, Potato, Chicken, Beef, Berry, and Beans were all eliminated from his diet.

After about 2 years with this allergist we had enough and sought out Dr. Leickly @ wonderful Riley!  We are ever so grateful we did.  We reviewed Connor’s history with Dr. L and were amazed at how secure and comfortable we felt with him!  We did all of the RAST and Prick tests.  Many came back positive.

Dr. L knowing what we had been eliminating from his diet was now put in a position to decided to either continue on the same path or not.  This was a scary proposition for all of us.  Not knowing what Connor was truly allergic to is so AGGRIVATING!  We decided to go with the highest results and eliminate those.

Today Connor is allergic to Dairy, Egg, Peanut, Tree nuts, Rice and Potato.  He strictly avoids all of these foods.

A friend of mine for the last 20+ years was drinking coffee once with creamer and kissed Connor’s head immediately he swelled and had hives.  Again Benadryl took care of it.  We are VERY thankful that we have NEVER to date had to use an Epi!

The most aggravating parts of Connor’s allergies are that so many foods were eliminated from the word go.  Now we are stuck in the situation of following testing results and the fear of challenging or introducing them may do more damage than good.  But the thought of him having more foods is so wonderful!  This will be our topic of conversation with Dr. L at our next visit which unfortunately is not until the year mark, next Feb 2011.  We can’t wait for the next visit.

Along the way when Connor was about 3 and up to age 3 he suffered from failure to thrive.  He continually was throwing up, and eventually it began to look like coffee grounds with a ton of mucus in his vomit.  We spoke to Dr. L about this and he immediately sent us to Dr. Sandeep Gupta.  Connor was shortly diagnosed with EE (Eosinophilic Esophagitis) and started treatment.  What a relief it was to finally know what was wrong, that the throwing up was no reflux and we were not crazy.  He was to the point that simply drinking just water caused him to throw up and he continued to lose weight.  We are now happy to report that his EE treatment is working and he is a healthy happy little man!

For new comers to the allergy world we offer some advice……..educate yourself as much as possible read, read, read, and talk to lots of families in the same situation and go see Dr. L from the start!  Always read labels, be aware of your little ones surroundings at all times and live life to the fullest always!  You were given this special little person for a reason and they will allow you to see life in a whole new perspective.

I will never forget our first trip to the grocery store when Connor was first diagnosed.  We were there for over 4 hours and walked out with only 2-3 bags.  We were lost on how and where to buy food.  After learning much…….we now can shop in 30 min and have a huge cart full! 🙂

Connor is now going to be 6 and started Kindergarten this year.  Due to the nature of his allergies we have opted to home-school him.  With his dairy allergy being due to contact and not consumption, we really do not know his reactions to other foods. The thought of going to a public school is hard for us to consider with his life at risk.

One of the hardest things about living with food allergies is finding alternatives for every day events like going to the movies, keeping him safe on a playground, eating, traveling, eating out, swimming, etc. I just know it gets easier as time goes by and cherish each and every day!

I truly think that the decision to home school or send a child to a public or private school is completely up to each family.  Our oldest attends public school.  It was a tough decision to make but feel we have made the best one for Connor.

We recently learned of K12 School you may visit it at k12.com.  Connor has been accepted into the program.  We will now begin all case conferences to find the least restrictive environment for Connor. We are very excited about this as is Connor.

Thank you for taking the time to read our story.

We walked in the FAAN Indy walk this year and what an amazing day it was!  Dr. L was there!

I encourage all families to seek out the local FAAN Walk Site for your state and take part in the event.  I was brought to tears listening to Paige Cassidy speak at our event.  Then just looking around and seeing so many families that are in the same “boat” as we are is simply an amazing feeling!

Connor’s Mom

 

 

      Ella successfully passing a peanut Challenge. We started off a bit nervously and we ended on a high note- ergo the ear to ear smile. I always ask if the children/families will share their experiences. It is one thing for me to talk about what goes on with food allergy, it can be quite a different story when the perspectives are those of the family and more importantly are from the child. Here is Ella’s story-with a preamble;

 

 

 

 

 

Dear Dr. Leickly,

Ella finished her story about outgrowing food allergies. I’ve attached two pictures to this email. The first is her eating her very first peanut butter and jelly sandwich. The second is her giving me a thumbs up in your office after finding out she passed. She took writing her story quite serious and went through several “rewrites.” Below is her final story.

 It’s OK To Have Food Allergies

 By:  Ella

Hello, I’m Ella and I have food allergies.  It’s ok if you have allergies.

I was born with five food allergies.  Now I’m 8 years old, with two allergies.  When I was born my allergies were dairy, eggs, soy, peanuts and tree nuts.  Now they are dairy and tree nuts.  First I lost my egg allergy.

Then I lost soy.  Then I lost peanuts.  It feels great when you lose an allergy, but it’s a little overwhelming.  My peanut allergy is why I had to sit at the Allergy Table during lunch at school and now I don’t have to sit there!  My mom makes the best peanut butter squares ever!  So it’s ok to have allergies.

 

 Thank you so much for doing what you do!  We feel very blessed to have you and your expertise helping us navigate the world of food allergies.

Sincerely,

Ella’s Mom