Hazel's Allergy Journey - Part 1

*******I’m going to preface this by saying this is going to be a LENGTHY post and for most of you readers, it will be boring.  I promise I’m not offended if you skip over it.  Especially since I’ve already written most of this here and there on this blog.  For others of you coming here for the first time, you'll see yourself or your child in these words.  Hazel's story is the story of many many families.  Now it’s all in one spot.  I plan to add to this as Hazel grows.  This journey is far from over.*******

I’ve had a number of people seeking out my blog for information about food allergies in the past few weeks. I thought having this information in one spot would help make it easier to read about our journey with Hazel and food allergies and where we are now.  I still love talking to people through email and on the phone, I love it actually.  I've been where you are.  I thought this would help explain where I’m coming from.   I’ll link to this post on my sidebar to make it easy for someone coming to my blog for the first time.  I’ll post our brief (well, brief according to me) experiences with Hazel and some of the things I took the long way to learn as well as some of my favorite resources and links.  I’ll do this in a series of posts to break it up a little bit. 

I was inspired by the inaugural Utah Food Allergy Conference I attended today.  Another fabulous event put on by UFAN.  I only made it to the last speaker and the panel discussion but I was inspired!

Okay, here’s the early part of our journey.

I’ll start with Hazel’s symptoms.  Around 2 days of life, Hazel experienced an unexplained eye infection.  At the time, it was brushed off as conjunctivitis and we were given some ointment and sent on our way. At 4 weeks old, she broke out into severe eczema that never went away.  It was especially bad on her scalp, hands and feet.  About this same time, she began profusely vomiting after every meal.  We were assured it was normal and that maybe she had some reflux.  I began having some serious doubts and tried to deny my gut feeling that something was seriously wrong with her.  She also experienced severe bouts of diarrhea and at 4 months old would scratch her skin until it bled no matter how short I clipped her nails.  I put socks on her hands and she wore hats every day as she had scabs and bleeding all over her face.  She started having what I called “spasms” in her esophagus after a few months of the vomiting and diarrhea.  It would sound as if her throat were swallowing over and over again and she would gasp for breath.  It was scary!  She also had droopy, red, swollen eyes and strangers would always comment that she must be “sick” or “tired”.  In addition to these, she experienced a strange insensitivy to pain, baldness, little weight gain, runny nose and lethargy.

Over these first 9 months of her life, I tried several remedies for her skin and vomiting to little success.  I seemingly tried every cream, lotion, ointment and bath on google.  I nursed her and tried eliminating diary from my diet which seemed to work for about a week, even clearing up her eczema for a day or two before it returned twice as bad a week later. 

Her 9-month routine checkup was where everything changed.  Jarom and I went to the appointment armed with google articles and asked for an allergy blood test be performed.  We both were horrified to learn that her weight had not increased since her 4-month checkup and had only increased by a pound from her 2-month checkup.  Failure to thrive.  I was told that I would need to discontinue breastfeeding immediately and supplement her diet with formula and return once a week for a weight check.  I was given some samples of a “hypoallergenic” formula.  We went straight to the hospital for the allergy test before hurrying home to attend to her weight issue.  Jarom went back to work and I made her a bottle.  She was hungry and sucked down about 6 ounces of formula.  I immediately noticed hives forming on her cheeks.  I took the bottle out of her mouth and the hives were spreading quickly down her chest and on her arms and legs.  I was terrified and called the doctors office and Jarom.  The nurse told me to give her some benadryl and get her in the car as quickly as I could and rush her to the ER or back to the doctor’s office (whichever was closest).  I put her in her seat and had one hand on the steering wheel as I drove and one hand on her mouth to make sure she was breathing.  I finally arrived at the doctor’s and they were ready for us, showing us to a room where they hooked her up to cords and monitors.  At this point, her little body was completely swollen and she had begun gasping for air.  They administered a shot of epinephrine along with some steroids for her lungs.  Anaphylactic Shock.  Jarom met me there and we both sat in a stupor.  I was told to continue nursing her and to come back after we got the results of the allergy test.

Fast forward to the next week.  We had gotten the results from the hospital which was a list of foods and some numbers.  It made no rhyme or reason and we hoped an allergist would help.  We met with an allergist who didn’t help much.  He gave us two good tips that we were thankful for but it turned out he wasn’t a board certified FOOD allergist, which apparently helps if you have a daughter who was recently near the end of her life after consuming a dairy/soy based formula.  Anyway.  The two good tips were Neocate and support group.  Neocate is an amino acid based formula used by babies, children and adults who are unable to eat enough regular food to sustain life.  We were given some samples and told that it was expensive.  We were given a prescription for an epi-pen and told never to be without this life-saving device.  We were also given a huge list of foods that Hazel was allergic to:  Milk, Eggs, Wheat, Soy, Corn, Peanuts and Tree Nuts.  I sat defeated in the office with visions of her birthday without cake and ice cream, Summers without ice cream, holidays without French toast and strawberry waffles and her wedding without a beautifully decorated cake.  I was devastated.

On our way home from this appointment, I pulled out my phone and looked for a food allergy support group.  I found a number for Michelle Fogg, president of UFAN.  I called and tearfully spoke to her and tried to make sense of Hazel’s diagnosis.  She told me that it gets better.  She said I should get used to cooking things from scratch.  She gave me information about meetings and an upcoming group meeting with Dr. Richard Hendershot. 

We acquired Neocate and learned it was, indeed, expensive.  We had lots of help from dear family and friends who heard our story and helped us in our darkest time.  We will forever be thankful to those who helped our sweet Hazel by providing her with the life-sustaining formula.  It was all she consumed for about a year of her life.  She began to thrive.

After attending the group meeting with Dr. Hendershot, we quickly made an appointment with him and have been grateful for his knowledge and expertise in the area of food allergies. 

She also met with a Gastroenterologist who performed a scope and biopsy after her 1^st birthday and confirmed the diagnosis of Eosinophilic Esophagitis.  It’s basically an allergic throat.  In Hazel’s case, she has a very hard time swallowing meats and starchy carbohydrates.  There’s more to it, but suffice it to say that her case is mild in comparison to other kids her age.  Most kids with severe EoE are tube fed and don’t eat any solid foods.  Ever.

Hazel continued to thrive.  Within a few weeks of starting Neocate, Hazel’s hair grew.  Her skin cleared up, her eyes sparkled, she stopped vomiting, her diapers were consistent and less, umm, messy.  With the help of Kids on the Move, she crawled and walked within two months.  She became happy and talkative.  She was truly a different baby.  I still tear up when I think about the drastic changes that occurred in that few short months after her diagnosis.  Words like ‘miracle’ come to mind. 

Since that time, we’ve ruled out her wheat, soy, peanuts and corn allergies.  But added beef, pork and most meats.  So her current allergy list is: Milk, egg, meat and tree nuts (except almonds).

We've had a few major reactions since her first experience with an allergic reaction.  When she was close to a year, she got into Cannon's sippy cup of milk.  She splashed in a puddle on the kitchen floor and rubbed her eyes which caused them to swell shut and she had hives all over her face and chest.  Around 18 months, we fed her a sandwich we thought had no cheese only to find that there was some shredded cheese under the lettuce.  Her lips started to swell but we got her some benadryl as quickly as we could and she returned to normal.  Then at around 22 months, I made her a taco that had cashew in it.  This reaction was much more instant and turned out to be anaphylactic.  We rushed her to the ER and she was given a steroid treatment along with several doses of Zyrtec and Benadryl.  Luckily, she was fine after a few hours.  There are a few more smaller reactions but these are the ones that stick out in my memory.  It's easy to blame myself each time she has a reaction but it's also a good reminder that her life is precious and that her allergies are real and serious. 

Hazel continues to thrive and gain weight. We have weaned her off of Neocate, which is our latest mountain of success!  She drinks almond and rice milk regularly.  I make a batch of almond milk every 2-3 days (it’s cheaper!).  She is at an average weight and is progressing developmentally, socially, and cognitively.  I am so proud of this girl.

Next Up:  Hazel's Allergy Journey - Part 2 (coping with the life-changing diagnosis)