Kaylin's Diagnosis

Kaylin was born May 2003.  As a baby she spit up, a lot. We often worried about her getting enough but she continued to grow well. Nothing seemed any different when moving from breastfeeding to formula feeding. We changed formulas multiple times and settled on one that seemed to cause less spitting up from the others but it always seemed like something wasn't quite right.  I asked the pediatrician about it on multiple occasions and since she was growing well, he didn't see a problem.  At one point, the Doctor sarcastically asked if we wanted to put her on a hypoallergenic formula that cost at least $60 a can.  He basically said there was nothing we could do about it and treated me as if I was an overprotective first time Mom.

From the very first days home, she was very happy but every evening was spent crying in pain.  She would tuck her knees up and scream for hours.  We were told it was just gas and I went to great lengths to remove foods from my diet that may irritate her with no success.  We introduced foods at 4-6 months and had to go extremely slow because she was so intolerant.  Just a 1/4 jar of baby food green beans left her up all night screaming.  Nevertheless, by one year she had a full diet.

Age 1
At a year, we introduced cow's milk and weaned off formula.  Right around her first birthday, she had her first ear infection.  Looking back, we should have seen a connection and Dr's should have taken note.  She was started on daily allergy meds for stuffiness and hopefully to help with the infections.  Since infections usually start improving at a year and during the summertime, the ENT thought it was strange but since no other typical food allergy symptoms were present, foods were not considered.  The infections continued one after another from May to November when tubes were put in.  The ear infections stopped but we noticed she was still spitting up food.  She was not actually throwing up but as gross as it sounds, we would catch her re-chewing food and she was refluxing acid as well.  By age two, she was placed on liquid Zantac.  She would often wake at night screaming and we were never sure if she was in pain or having nightmares.  She would rage, kick and scream and we tried everything to calm her.

Age 2 & 3
We tried taking the Zantac away and then would try it again.  She would go through weeks or months where the reflux and regurgitation seemed better and then it would get bad again.  The Zantac didn't seem to help either way.  The pediatrician finally placed her on Prevacid and we got a referral to a GI at Rady Children's Hospital in San Diego but I had to work and my husband had to take her himself.  They sat in the office for over 3 hours and the doctor suggested some tests be done and doubled the dose of medication.  No one ever called to schedule any tests and when I called to speak with the GI, she yelled at me for questioning her.  She said if she wanted tests ordered, someone would call and order them.  When I asked about doubling the dose of the Prevacid before giving the lower dose a chance to work, she was angry.  After weeks and weeks of the Prevacid not working, we took her off of it.

In December of 2006, Kaylin's baby sister was born.  After a few months we realized what it was like to have a "normal," healthy child.  She spit up on occasion but we did not spend hours wishing they made burp rags as big as bath towels like we did with Kaylin.  We introduced foods slowly to Keira at 6 months and she was able to eat a jar at a time rather than 1/4 of a jar and reacted normally with each new food.  She would sleep through the night when Kaylin was still waking up screaming almost every night when she was almost four.

Age 4
At Kaylin's four year checkup I insisted on a referral to a GI specialist again.  The pediatrician wanted to speed up the process and while we waited for our appt, a barium swallow was done.  The barium swallow came back to show everything was normal.  At this point, we saw one of the 5 pediatricians in the office and she explained that maybe we see a psychologist and cancel our GI appt.  This would be the last time we would allow her to see our daughter and we proceeded with the GI appt.

September 2007
At our GI appt, we never met the GI doctor.  The doctor working on her fellowship spent over an hour with us asking questions and writing things down.  She went to speak with the doctor momentarily and returned to tell us an endoscopy needed to be done.  Apparently the original GI thought Kaylin might have Celiac disease but didn't bother to tell us or do anything about it.  I think the Fellowship Dr. suspected EE right then and there but couldn't tell me.  It wasn't until we were in the endoscopy waiting room that we even met the Dr. when he offered to keep an eye on Keira so we could both help hold Kaylin while they started anesthesia.  After the scope was finished, the Dr. working on her fellowship came out and explained that they were almost positive that Kaylin had Eosinophilic Esophagitis and CHSD had some kind of rare specialty clinic for it.  I was both relieved and scared at the same time.  At least I had a name for what was wrong but what the heck was Eosino-whatever and how the heck do you say it?  I remember Googling it on my husband's Blackberry and coming up with the APFED and the CURED foundation websites.  I read off all the information and symptoms on the APFED site and couldn't wait until I could get home to a real computer.  Little did I know at that moment but I had pretty much read all the information I could already because there was nothing else out there.  After 2-3 days of reading everything possible, I had found the end of the internet.  We realized then how lucky we were to walk into the right place at the right time since CHSD offered one of only a few clinics in the nation/word that dealt with EE.  All the CHSD GI specialists had been trained to do biopsies and educated on the symptoms of this disease.  Other than APFED, CURED and a Yahoo support group, any additional information was few and far between.  After a long week of calling and leaving messages with the EE clinic, the nurse called me back to give me biopsy numbers and basically an official diagnosis.

Our first visit to the EE Clinic
We were so excited to finally get Kaylin some help but it was sad to hear that they didn't have much more information than I had already read online.  They did skin prick allergy testing and everything came up negative.  We weren't surprised since we had never seen anything that seemed like food allergies.  We were given 3 treatment options.  The first was the most popular with the four doctors in the room with us and that was swallowed Pulmicort.  Then the other two options were removing the top 8 allergens and to remove all food and go formula only.  They gave us a minute to decide but it seemed pretty obvious at the time that we only had one option.  Kaylin had just started preschool and taking any foods away from a kid who didn't seem to have food allergies seemed cruel.  They showed us how to give the Pulmicort mixing 2 respules of medication with 10 Splenda and we went on our way.