Tuesday, July 15, 2008

Tyler's Peanut Allergy Story

Anyone that has a child with a peanut allergy has a story. It’s sort of a cruel initiation into this club to which we all reluctantly belong. Our family is no different. Since I’ve learned a lot reading the stories of others, I will share ours.

When Tyler was born in January of 2005, he looked perfect in every way. At six weeks, however, he developed a rash on his forehead. Within a few days it turned as rough as sandpaper and frequently had a crust over it that was the color of honey. I called the doctor and they told me not to worry about it. They suggested A & D ointment to protect it.

By 4 months the rash had spread all over his scalp. His entire face was red and inflamed. Some areas were infected. We took him to the doctor so he could see for himself. He suggested I cut out various things from my diet since I was nursing. I obliged and cut out one common allergen each week. One week, after eating peanut butter candy, I noticed his rash got much worse. I immediately cut all nuts out of my diet. Still, the rash persisted. As a result, peanuts entered back into my diet.

Since the rash never went away, the pediatrician said it was not my diet. I requested food allergy testing to make sure. He told me it would do no good. We finally received a steroid cream to treat the rash but the cause of it still bothered me.

Fast forward to 11 months when weaning began. I gave him his first bottle of milk-based formula to see how he would like it. He sucked all 8 ounces down in no time flat. A short time later, he vomited and broke out in massive hives. They were so large they looked like boils. Had a friend of mine who is an RN not been over at the time, I would have taken him to the ER.

At his 12 month check up, I demanded allergy testing, stating his problem certainly had been something in my diet. I feared milk might not be his only allergy. I did not want to find out the hard way again. He finally agreed and a month later we were in for allergy testing. They tested for about a dozen different things. Three big bumps emerged. The doctor said he was allergic to milk and eggs. Then she pointed out the biggest bump and said, “That one is peanuts.” I gasped. I knew enough to know that was not good.

After that appointment, I got on the internet only to see peanuts was the most deadly food allergy there is. I was pregnant at the time with baby number two (and very hormonal, I might add!) and I spent a great deal of time crying. I knew I ate tons of peanut butter nursing. In addition, a child gave Tyler a small peanut piece to eat when he was 9 months old. He swallowed it before I could stop him. That, I knew, was probably what kicked him over the edge.

We lived a peanut free life. We learned how to use Epipens. We also prayed he would be one of the few that outgrows this allergy. Two years later, in February 2008, his RAST test showed no allergies, including peanuts!! We were thrilled!! Refusing to do an oral challenge at home for peanuts, I waited until his next appointment with his allergist in June. She promised he had outgrown it. There was no need for me to fear.

Then she gave him a small amount of peanut butter.

I could tell almost immediately by the look in his eyes he didn’t feel well. The doctor examined him and told me she could see nothing wrong. Less than 5 minutes later, 911 was called. (You can read a post I wrote the day after that horrible experience here.)

From that experience it was apparent he would never outgrow his peanut allergy. I wanted to hide under a rock and take him with me. How could I protect him from the peanut-filled world out there as he grew older?

I can’t, of course. Instead, I decided to educate anyone and everyone that would listen. I decided to be an advocate for him, including educating the school systems and legislators about this life threatening condition.

Out of that, “Peanut Allergy Kid” was born. It is my first step as a parent to make an impact, however small it might be, on this situation. I truly believe one day there will be some sort of a treatment for this condition. Until then, I have committed to do whatever I can to make a difference in Tyler's fight to stay peanut free and all other children like him.

9 comments:

C.Family said...

Thanks for finding my blog. My son is allergic to peanuts, milk, eggs, peas and goats milk. Life is sure different when you have a kid with allergies. What allergies does your son have? I am always up for sharing recipes if you want to.

Andrea said...

I think this blog is such a great idea! Although my children don't have food allergies, I used to do medical transcription for an allergist's office, and I admire your initiative in trying to get information and support out there for people.

Peanut allergy is so serious and seems to be occur in more and more people (especially children); it's important for everyone to be well-informed, whether or not we have children with this allergy.

~Andrea

Melanie said...

I recently found out with a trip to the emergency room and a visit to an allergist that my one year old son is peanut allergic. I am 7 months pregnant and needless to say, I am doing my fair share of crying. I nursed him and ate peanut butter - I didnt know not too! It is good to hear your story and see that you are living with it. I am freaking out about Thanksgiving. Any words of wisdom for a PA neewbie?

AvasDad said...

Thanks for building this site. My daughter, Ava, was diagnosed with life-threatening PA at age 2 after I shared one of my favorite snacks (peanut butter) with her. We had no familial history and no idea. After a harrowing trip to the ER and stay in the ICU, her mother and I have launched ourselves headlong into advocating for our child. As you know it's not an easy proposition. One has to walk a fine line between advocating and becoming a pariah to everyone with whom one comes in contact. Our latest adventure: selecting the right pre-school. Each has a different definition of "peanut-free" and few administrators really get it. That is until you bring their attention to the "American Disabilities Act". Stay tuned.

Lynne said...

Thanks so much for this blog! My 20 month old was diagnosed with a peanut allergy at about 13 months. He did not have a life threatening reaction (this time), but it is still scary, especially with family members who don't understand and don't care to understand how real and dangerous this is (a topic for another post from me perhaps). I have looked and looked for some of the information and practical tips you have in one place. this is a wonderful resource -- thank you thank you!

Kristy said...

I am so happy to find your blog!! My 4 year old has a PA, and it feels like an up hill battle since everyone thinks he will "grow out of it"!! He goes to school in the fall and I am scared to death!!!! Mainly, I feel very guilty that he has this allergy. I ate pb & banana sandwiches everyday while I was pregnant, then he showed signs of having a milk allergy and we switched him to Soy which aggervated his PA allergy. Thank you for sharing your journey of keeping your son safe, so maybe I can learn from you and keep mine safe as well :)

Anonymous said...

Are these comments for real? EAting peanut butter while pregnant has nothing to do with your babies developing a peanut allergy. It's the vaccines the babies receive. Do yourselves a favor and start educating yourselves.... my god. http://www.the-health-gazette.com/peanut-allergy-vaccinations-link-consumer-concerns

how about just googling peanuts + vaccines+ link.

wow, this ignorance blows my miiind...

Anonymous said...

There is a treatment for peanut allergies. It is called NAET. It is not recognized by modern medicine. Find an experienced NAET practitioner and in most instances they can either eliminate or greatly reduce the allergic response. My wife had a horrible peanut allergy. she would start choking when in the same room with peanuts. She got NAET treatments and she no longer responds to touching or being near peanuts. She had such a terrible history with peanuts that she isn't willing to try eating them still, but just being able to tolerate them in her vicinity is a major improvement. We now have peanut butter in the house. My son cured many food allergies using NAET as have I. good luck

Shannon said...

We have had to learn so much since my oldest son was diagnosed with nut allergies. It's nice to see so many other parents out there struggling with the same thing. I really like a lot of your links, and will recommend this site to other moms who may use it. We have a similar story of food allergies + eczema + asthma...http://blog.kramernet.org/treenutallergy/